Meet Kaibo :) 9 y/o toy poodle - Myotonia, Diabetes, adrenalectomy; now PDH and CC

[Trish]

OH wow I have such a big smile on my face reading your report. Sounds like such a dramatic improvement and he flew through it like a champ!! I am so happy for your guys, you might have to tie him down once he gets the next leg done as sounds like there is going to be no stopping him!! That is so good to hear the diabetes is behaving, gosh that would be awesome if that gets under better control too!! xxxxxx

[kaibosmom]

Ha ha Trish…I was thinking the same thing…I'm going to have my hands full when he has had both hips fixed and recovery is done! Good thing the recommendations for this type of surgery is as much movement as tolerated! He seems to be a happy camper that is for sure. Just about to give him his antibiotics (they normally don't keep them on but for him they are with the diabetes and all). Oh and no Bark Box right now but it will be on the way soon. Ready for him to destroy after left hip surgery is complete!!

[Trish]

Hmmm well yes, lol Kaibo does have a bit of a bad track record with infections!! I would have him dosed up as well, especially with that recent infection problem. I think Kaibo and Flynn are having a race to see who can clock up the most surgeries...!!

[kaibosmom]

Hi. Kaibo seems stronger every day. He's starting to walk better (still hampered by that left hip) and starting to flex his knee at times. He's been walking so stiff legged for so many months I was worried there was something wrong with his knees too. Surgeon checked them before and after surgery and said they are tracking well and solid so hopefully once the pain subsides and we start rehab there will be more mobility. He's been cheeky with getting ice packs on. He seems to get up and down more comfortably too. Overall very happy with his progress so far.

[mcdavis]

So pleased to hear that the surgery went well and that Kaibo is improving so quickly.

[Trish]

Hi Nikki

I hope Kaibo is continuing to make a speedy recovery! Sounds like he is flying through this latest op, so hopefully he will do the same for the next hip! Such a brave wee boy xxx

[Squirt's Mom]

Hi Nikki,

I'm so happy Kaibo is doing so well and pray the trend continues. He is such a strong little man, determined and full of surprises!

Hugs,
Leslie and the gang

[kaibosmom]

He is definitely determined and full of surprises! Surprising me with how well he is recovering from hip surgery is ok though. He is still loving life. It really is hard to believe he had surgery…also hard to believe the left hip is a week away now. EEEKKKK!!! He has been to see the rehab vet twice and goes again tomorrow. That will be it until the next hip is done and he is ready to go back. He is so happy to go for walks and seems much more comfortable. The rehab vet did some fancy analysis stuff and he is definitely putting more weight on his right than left so that is a good sign that it is more comfortable for him. He's been a good boy about rehab exercises at home. His personality is as it was prior to surgery, very happy, bright eyed. He wants to see everyone!!! Such a good sign as for many months he couldn't be bothered by other people, which wasn't normal for his social butterfly self! I can see that he is ready to be a therapy dog again :) We can't wait. He is still being a cheeky monkey. His current focus…antagonizing the neighbourhood dogs. We will walk for his rehab walk and he "gets tired" right in front of the houses with all of the big, barky dogs. He waits until they are barking their heads off then slowly begins to walk away. The other day, he beelined it across the street but I let him go where he wants as everything is an exploration again! I realized he led me right to the house where 2 big, barksters live. Oy. The owners must be so impressed. I have to admit, I love it though. I love seeing him like this. I love that he is so excited for walks. I have hope that once his left leg is done, he will walk better (start using his knees; very stiff legged now). I have hope he will run. I didn't know what to expect but have opened my eyes to a more normal way of living which will be refreshing! There are little things that happen every day that make me smile. Trying to scratch his ear. I mean wow, something that has been inaccessible for him for months. He hasn't quite mastered it yet but the fact that he is even trying blew me away. The highlight so far, seeing him lift his leg to pee! Seriously, I smile like a fool when he does it. I even video taped it! Ha. That gets better every day too. He is putting more weight on the right and it looks almost normal now. It's the little things :) Thanks for checking in on us. I'll be back in again over the next few days…keep us in your thoughts on the 29th. I'll be a wreck again. Oh and we have almost hit a milestone for Cushing's…it's almost been 1 year since his adrenalectomy. July 25th was the day. Wow..so much has happened to him since!!!

[molly muffin]

This is all such a great post Nikki!! Kaibo is just like the energizer bunny, keeps on going no matter what.

I know those little things can just crack you up laughing can't they. For me I love that kick back they do. It's such a happy thing to see.

We will definitely be keeping you in our thoughts and right here for the 29th!

hugs
Sharlene and molly muffin

[molly muffin]

Hi Nikki,

So, tomorrow is the big day. :) We'll be right here, waiting for word with you.

hugs
Sharlene and molly muffin

[Harley PoMMom]

OMGoodness, a year has passed since Kaibo's adrenalectomy was done!! I am so glad that he is doing so well, and of course spiritually we will be right along side of you when he goes in for his hip surgery. Do keep us updated!! Keeping you both in my thoughts and prayers, hugs, Lori

[kaibosmom]

Hi! Yes...one year since the adrenalectomy! He's doing so well. It's nice not to get up a million times at night when he's hungry. He only pants when he's tired from his walks we've been going on now. He's very out of shape but who wants to move when your hips are dislocated! Tomorrow is a big day. Another one. He's looking good. Bright eyed. Strong. Healthy. Maintaining his weight. He was breathing weird yesterday but surgeon didn't seem concerned. He's also had some loose poops for a couple of weeks. I'm doubting myself about not taking him in now but everything else was normal. Eating like a champ. Happy. No vomiting. No mucous or blood like in the past with a pancreatitis flare up. Overall, I'm excited to get this surgery done. We've seen so much improvement with the right hip already. Range of motion is getting really good. Walking is getting better but limited because of the left hip. Looking forward to much more improvement. I'm nervous about the surgery but knowing he made it through the last one so well I'm a bit less teary eyed today. We've had a great day outside. It's gorgeous here today. He stays in the shade but likes the sun from time to time. We've had a good day. We will have many more as he recovers. Thank you so much for the positive vibes. Prayers. Etc. we are so thankful for this community. I'll keep you posted

Xoxo
Nikki and Kaibo.

[kaibosmom]

Hi everyone! I just wanted to write a quick note saying that Kaibo made it through surgery with no complications. The last update we had was that he is recovering "the way Kaibo does"…so I'm guessing he is acting like it was no big deal. We are on our way to visit him now :) Thanks for all of the well wishes and positive vibes. Bye for now.
Nikki

[Budsters Mom]

YAAAAAAAY!!!!! terrific news Nikki. Give him our love. :p

[Harley PoMMom]

YAHOO!!!! Oh Nikki, this is such great news and I am so happy for you both!!! Do keep us updated...thanks!!!

[molly muffin]

Excellent news. Go Kaibo!!!

Do glad to hear he is being his normal self. You know wrapping the staff around his paws. Lol

Hugs
Sharlene and Molly muffin

[doxiesrock912]

Awesome news!!! Ho Kaibo!

[kaibosmom]

Well I'm happy to report that Kaibo is home and resting comfortably. He continues to blow my mind! He is walking really well today. Yesterday when we caw him he was so stoned and out of it...cute though...but he didn't seem interested in walking on the left leg at all. Today, he pranced out of the hospital like it was no big deal. I was grinning from ear to ear...so was his surgeon and everyone else who saw him. I wish Brett could have been with me. Anyway, now the recovery journey really begins. I can't wait to see the changes. Videos are up on Instagram if any of you have found me there. If you have make sure you let me know you were there!

Oh and Sharlene...yes...charming everyone. A new resident called me this morning and said he's breaking hearts all over with his cuteness. Ha ha. Such a ham. Another girl who's really familiar with him said he would come to the front of his cage and cry and whimper every time he heard her voice. I'm sure she took him out for cuddles. I swear the boy probably spends very little time in his cell when he's there. Lol

[addy]

Wonderful news and big hugs and kisses to you and Kaibo.

So glad things went well and I am sure recovery will be fine:):):)

[molly muffin]

Isn't he just wonderful. He really does seem to come through these very quickly. Well, other than that one incident, but now they are aware and can adjust the anesthesia and keep an eye on him so it isn't a problem.

Now the really intense part starts. Rehab!

hugs
Sharlene and molly muffin

[Trish]

WOOP WOOP!!! HURRAY!!



Yay so pleased to read that Kaibo is now two legs done and he is doing great!! Gosh he really is a super dog!! Hope the rehab goes well Nikki, how are his sugars, hopefully they are behaving. I so want to see some video of him if you have one!! Wow this made my morning!! Woooohooooo must be time for a Bark Box!!! xxx

[molly muffin]

I found your Instagram page. Love all the pictures. I really need to join so I can see the vids I guess.

How is kaibo doing? Little trooper that he is.

I really wanted a peanut buster parfait this morning after looking at the pics!

Hugs
Sharlene and Molly muffin

[kaibosmom]

I missed these posts!!! Put some videos on You Tube but did something with privacy settings now can't change it. You might need the link

http://youtu.be/vNAhCWm-2rk

http://youtu.be/eaPEnKrTxZc

Any others I post I'll make public. Will write more later!

[Budsters Mom]

He looks great Nikki. Love the butt wiggle. :D

[kaibosmom]

Ha ha. Yes! The butt wiggle. He has some FHO friends on Instagram that all have the same wiggle. It might be here to stay! I don't mind. I can't imagine the pain he was in. Even if he walks like this forever I'd be ok with it knowing the pain is gone. He had rehab today. Second time since the left side. He seems more painful on the left compared to this time after the right side. We are attempting to stop pain meds tonight. First time without them for over 9 months. Hoping for good things for his blood sugar once pain is gone. His blood sugar has been all over the map but pretty much the same as it was before surgery. Overall seems comparable or a bit better than before surgeries but we haven't done a curve. We will do one next week. He's starting to flex his right knee when walking and his leg seems straighter (it was turned out prior to surgery). His range if motion is getting really good on right. That side had a 20 day head start so to be expected that it's doing better overall. Looking forward to seeing where he will be 20 days from now. He hasn't tried to do stairs and shouldn't yet but I can see the wheels turning. Goodness, I'll have my hands full when he figures out stairs again!

[Harley PoMMom]

Oh Nikki,

I think that Kaibo looks great too!! Such a trooper he is, so adorable too!!

Will keep sending healing energy and keeping you both in my thoughts and prayers.

Hugs, Lori

[kaibosmom]

More videos on. Including one before any surgery. All should be public now

[Mackenzie]

I loved those videos! Kaibo is so stinkin' adorable!! Sending you both much courage and many positive vibes for his recovery :)

[molly muffin]

He looks awesome! I think he's made some really great progress. Love the butt wiggle.

hugs
Sharlene and molly muffin

[Trish]

Hi Nikki

Awww so loved watching Kaibo's video, such a positive change from his preop one even from just one day post op! So thrilled to see walking better. What a hoot with that shaved back end :D:D he looks like he wants to be so busy and check things out. Hope he is still doing amazingly well!! xx

[kaibosmom]

He is really enjoying life!! He really does want to be so busy on walks and is checking every little thing. His little tail wags when I get the leash out. It's like everything in the neighbourhood is new again. It is in a way. He hasn't been able to walk outside since October really. So he is loving life. Still off of pain meds. Blood sugar has been good the last couple of days but I don't want to jinx it! I hope the trend continues…he's been 19 to low 20s at meal times…for the last 3 meals. Fingers crossed. He even slept in today because his BG wasn't so high! He was enjoying walking around Broadway Ave which is close to my house and there was a festival going on called The Fringe. There are lots of people. He loves people!!! So it really made him walk (I carried him down there, then let him explore) lots so he could visit people. Some rude, some nice. Can you imagine people making fun of his haircut? Grrrrrrr. That kid has been through more than they could imagine. I wanted to punch them. Anyway, he enjoyed it and tried to walk down there today. It's over but he was determined. Silly boy. So, looks like he will be more than happy to go back to visiting at the hospital when he is ready. Yay!! Stitches come out tomorrow and he has rehab Tuesday and Thursday this week. He might even be able to begin work in the water treadmill this week! I found a new mobile groomer who is coming to our house and is willing to let me help her with him so he can have a bit of a tidy. The boy's schedule is full ;)

[Squirt's Mom]

I'm so glad Kaibo is doing well and enjoying life to the fullest! He really is a little trooper!

[molly muffin]

That is excellent Nikki.

Those people who would make fun of him, haven't a clue what they are talking about and aren't worth the time of day.

That is so cute Kaibo wanting to go back to the festival. Not even "Fringe" for Kaibo I think. I bet he would like to go visit people again.

He is amazing.

hugs
sharlene and molly muffin

[kaibosmom]

Kaibo got to go in the water treadmill today! He was such a good boy. I posted a video :)

http://youtu.be/Q74DYT5IThw

[molly muffin]

Awww what a great patient he is, doing his therapy so well.

hugs
Sharlene and molly muffin

[kaibosmom]

Hi. New video from today posted. He's bending his knees a bit in the treadmill but not on land. He's focusing on walking over poles that are laying on the ground. He doesn't pick his feet up at first but realizes he gets treats if he does. He's learning how to sit. It isn't pretty but he bends his knees a bit and tries to put bum doe do it's a start! Improvements every day. He's such a happy boy!

http://youtu.be/gzt2oZ5WEcQ

[Mackenzie]

Kaibo is such an awesome little guy! I see he's no longer wearing his fur vest :) Cutie pie

[Budsters Mom]

Kaibo is amazing! He looks wonderful Nikki! :p:p:p

[mcdavis]

So pleased to hear he's doing well. He's such a hero.

[molly muffin]

His gait looks pretty good in that video!

hugs
Sharlene and molly muffin

[Mackenzie]

Nikki, I just finished reading through Kaibo’s entire thread…wow. It reads like a suspense thriller and once I started I could not put it down! I am exhausted from all the tears I shed following along on his roller coaster. My goodness, he is a complicated little fella and you have not had the best of luck with the vets in the beginning, but he is strong isn’t he! I gotta say, I am a huge fan of team Kaibo, and am in awe of your courage through all of this. I am rooting for you both!

[Trish]

Awww just watched his water video, he's strutting along in there!! Looks pretty happy too Nikki :D Keep that wee tail up out the water :) so pleased to read all is going well. How are the sugars going? xx

[molly muffin]

Merry Christmas to you and Kaibo! I hope the little guy is continuing to do so well.

hugs

[doxiesrock912]

Love the video!
He's so happy :-)

[Trish]

Hi Nikki!! Lovely to see you popping in for Christmas!! Hope you all have had a nice time too :) Looking forward to our Kaibo update! :) xx

[kaibosmom]

Hello everyone! Well, we are getting close to a Kaibo milestone and it makes me think about you all even more than usual. The love and compassion we have had has meant so much. Even if I don't come around much anymore, know that you are all part of our lives! Now…where to start. Looks like my last post was about a month after his 2nd FHO surgery. Seems about right because school started right after that. I'm enjoying a much better behaved class this year so stress is down as far as teaching goes. I'm also less stressed because Kaibo is doing really well. He still goes to rehab once or twice a week. We were close to stopping but then the little bugger decided it was time to do stairs! I'll try to post that video but the vet sent it as a dropbox and I have no idea how to save it. I'll put the link in later so you'll have to let me know if it works. It is also winter here and we know he won't get out for walks much so the best choice was to continue with the rehab.

I have to say that he isn't where I envisioned him 5 months post-op but then again, people who haven't seen him in awhile always comment on his improvement. It has definitely been slow but rather steady. He is learning how to climb stairs again, as I mentioned, but they are only half height stairs so we are still carrying him up and down. He is learning how to sit again and will sit properly after his massage and range of motion (and with minor support). However, he still prefers lay on his side most of the time. We have had little successes, like laying frog style (his preferred position in the past) and scratching! He doesn't do either of those often but sometimes I wonder if he just forgets that he can actually do those things now. He is learning how to lay down "properly" at rehab but not at home - he just does that in rehab. He loves the water treadmill…well, he tolerates it and does well in it. He sometimes swims in it as well - a perk of being small I suppose! He will go running to the door to greet people but it isn't a normal run and we are ok with that. In fact, we are ok with all of it. He can walk. He has his personality back. He makes us laugh. He gets into trouble. He hides from his insulin needles. He is not in pain. We really can't ask for much more. I know there will be a time that we have to stop rehab but for now it is a bit of a security blanket of sorts. He is still getting better. He likes being there. We know he gets a lot of attention. It's kind of a win-win. His surgeon checks in on him often and has been known to take him out for walks just so they can hang out. It makes my heart happy!

As for the diabetes, well, we finally had a breakthrough in September. That is not to say we don't have high readings anymore (we didn't until about a few weeks ago) but for the most part, he stays in the low 20s and high teens for his pre-breakfast check and he is getting down to normal (5 to 7) during the day. A real success for the little dude. He is perky and full of life most days. And, like I said, he has a fun time now that he can run away from us before his insulin. It didn't take him long to figure that one out. If I hide, I get a treat to come out…and look, I can walk now so why not. Little monkey! He stays nice and still for his BG check and then under the table he goes. He is getting some high readings again and they are becoming more frequent so we may need to tweak things a bit but overall, we are happy with where he is as far as the diabetes is concerned.

Kaibo and I have returned to volunteering. He has a very good time and is quite a different dog. He's pretty outgoing for the most part. We mostly visit at the Dube Centre for Mental Health - Child and Youth side. We have visited twice with his little buddy Zen. She's super cute and loves Kaibo more than he loves her. She is also a therapy dog but they used to do agility and flyball together as well. She has many tricks up her sleeve, including skateboarding. So, they are actually a really good team. Kaibo is there for the looks, she is there for the tricks! Tricks are just no longer Kaibo's "thing". They get equal attention, however. The cuteness factor is high. Kaibo's favourite time was late night visiting at the University with Zen. Wow. We were there for 2 hours and he was the most vibrant I have seen him. We are going to try to partner up with Zen more often in the future.

Now…the bad. Kaibo has a defect in his abdominal wall. Remember the belly bulge he had after his adrenalectomy? I kept asking about it and it was "nothing." Well, now it is something and will turn into something…a hernia. I seriously had just stopped worrying about him and then we were told about it. The rehab vet noticed it. She measures it every time. It is growing. It was 2.5cm to start, it is now over 7cm and just last week started getting wider. Sad news. They have told us to be prepared for another surgery. I didn't ask many questions at first. Then as it grew I started asking. Can we fix it laparoscopically? Should we be letting it get bigger? Will that put him in more danger? Let's just say, he is being monitored closely. His surgeon checks on him regularly. His IMS took a peek with the ultrasound. His team is on it. They still all feel that with his history and his diabetes and the fact that he has had infection twice from the nylon sutures left behind from the adrenalectomy the "don't fix it if it isn't broken" policy is in effect. So, I feel uneasy about it. I try not to worry constantly but I also feel he is a bit of a ticking time bomb. For the most part, I am doing ok I think. But when he seems off, I get very stressed, very fast. So be prepared for me to pop on one day and ask for your support once again!

The other "bad" thing is his hair. It has been sparse for awhile. I thought it was growing back after the diabetes was controlled but it is not. In fact, one of his IMS vets (boss lady) asked for some pictures as she was talking to some vets about him. She wanted pics from before adrenalectomy to after adrenalectomy. Well, when you look at them all, it is very clear to see that he had more hair when he had Cushing's. He had more hair after the adrenalectomy. He had more hair at this time last year. Now, he is pretty naked. So, I've asked about the hair lots over time and was told it is the Cushing's, it is the diabetes, it is the trauma. And yes, it could be but the reasons never sat well with me. He has been deemed free of Cushing's and has had over a year to recover. His blood sugar has been in the best control since September. Why is the hair getting worse? So I've been reading. A few things have caught my eye. Hair loss due to adrenal gland issues certainly popped out at me. I have inquired about two things specifically - growth hormone responsive alopecia and testosterone response dermatitis. I have not heard back about this so I'll probably make an appointment to see the IMS and talk in person. It has been awhile since he has had a blood panel so might be worth it. The vets are/have been indicating he has Cushing's still. We are not concerned about that to be honest. He has none of the symptoms he had before - no panting, no getting up hourly for food, not drinking buckets of water, etc. So, I'm not sure where that leaves us, but to me, it makes sense that the adrenal gland may have something to do with it. After all, he only has one now, perhaps it isn't producing enough adrenal gland "stuff". LOL. While I don't want to look for other things that are wrong with him, I feel that if it is something we can identify and "fix" well then why not. I'd love for him to have his luscious hair back. And, if it is nothing then so be it. He is alive. he is here. No hair don't care! But there is still that nagging piece of me that says something is missing. I will explore it and see where it takes us. If any of you have any knowledge, leads, etc., please do share. I'm not sure how many other dogs have had successful adrenalectomies on here!

So, there you have it…a novel! An update on my man. My super dog, not unlike many of the other super dogs on here. I know many of you are going through such hard situations with your dogs and it is hard for me to be here with a positive report. But, I know that many of you have a special place in your hearts for Kaibo and wanted to share a good update with you! All the best for a wonderful 2015 for all of you, your families, and your pups! Cheers.

Nikki and Kaibo!

[Trish]

Well what a joy that was to read Nikki!!! Love the post, be good to talk to the IMS about the hair loss. Kaibo has sure had the gamut of endocrinology disorders with the cushings and diabetes so wondering if it is anything to do with that?!? Flynn has not had hair loss post adrenalectomy but then as you know his was not due to cushings.

If that incisional hernia is not causing any problems I would also tend to ignore it. But I think with it increasing in size then it might need to be fixed at some stage. So pleased the diabetes is better controlled eh!! Be nice to have the morning one lower but I am sure you will be tweaking as you say.

Sounds like the little rascal is getting about just fine, if a little limpy! It really does my heart good to hear he is back to his visiting and bringing joy to all those kids in there! Sounds like he has won a lot of hearts at the rehab facility, great he enjoys it so much :D:D so good to keep him going over winter when he is not going to be outdoors walking as much.

Oh and never feel bad about posting good news, it is so wonderful for those of us following Kaibo to hear all this!!! Brings me lots of happy smiles!! I had the same problem recently being unable to download photos, but it appears I had reached my limit and after I deleted some could add more in! xx

[kaibosmom]

Kaibo's stairs video. I think I uploaded it to You Tube. Check it out :)

http://youtu.be/waM25v0Jizc

He is wearing the bandage around his tummy to provide some support for the hernia. He supposedly is getting faster at the stairs and is climbing the entire set now. I was to see this last week, however, he was squished by a toddler (unfortunate event) and needed some TLC on his front left shoulder. The rehab vet said no stairs or water treadmill that day. I was sad! Although, I guess I did see a video she took the session previous and he only cheated (hopped up with both legs at once…which he likes to do a lot when outside in the snow or grass) once!

[Trish]

too cute, he has his eyes fixed firmly on the prize there LOL... Legs look nice and straight Nikki :)

[kaibosmom]

Thanks Trish! I might have to do some deleting and see if that helps! Let's face it, who doesn't need to see Kaibo and Zen in their super hero costumes at Halloween. Double duty at the hospital on Halloween. What fun it was! I didn't recall you ever mentioning anything about hair loss for Flynn since his adrenalectomy. I think it is worth investigating a bit. Now that I'm looking into it, it feels right and I've rarely been wrong about my instincts with Kaibo! And, yes, he will do pretty much anything for treats! :)

[Trish]

Why has he got the bandage around his tummy? Is that for the hernia?

[kaibosmom]

On a side note, I have recently come across a homeopathic vet from Canada. I managed to get a question in during a live web chat tonight. I'm very interested in his treatments. I have been reading a lot on his website and once I find out about any implications the herbals have on his blood sugar I'm going to try some of the supplements to see if there are any changes in his hair. He said I should start with the hair analysis. Might be interesting. here's the link
http://peterdobias.com

Has anyone heard of him or tried his stuff?

[kaibosmom]

Yes, for the hernia Trish! His rehab vet doesn't know if it helps but she does want to support it if she can. It doesn't hurt him so why not! I was thinking I should go back in and edit that! Will do that now :)

[Trish]

Never heard of the guy, but that's not surprising all the way down here! Makes sense to give it some support while he is exercising

[molly muffin]

Love the good report on Kaibo. I think it's a combination that he has to relearn some things but also make them part of his regular habit too. And that will likely come when he feels no discomfort.
I tend to agree with Trish that at some point with the opening increasing they will want to do surgery. As long as they use the same surgeon who is already aware of the things to watch with him it would hopefully be okay. Not that we wouldn't all be worried till fully recovered of course and I know you would worry.
He is so cute. Sure would be interesting to see if any of the herb combinations helped the hair growth.
Another thought is what about sending the ACTH panel down to university if Tennessee. Where they do the hormone panel check? We did that with Molly. Also some have reported return of hair growth with the melatonin used to treat atypical Cushing's i. Which the other hormones other than cortisol are elevated. How would melatonin work with the diabetes though is a question I am unsure of. Melatonin and lignans is the treatment for atypical. Just more stuff to add to the mix eh.

Huggers

[kaibosmom]

I have been having the same thoughts about doing an ACTH test and sending it to Tennessee. I think this is the place to start along with some blood work since it has been quite some time. His liver enzymes were dropping so I wonder how they are doing. I have read a bit about melatonin helping with hair loss but it does interfere with blood glucose (I can't remember which way off hand).

[kaibosmom]

Hi. Little update here. I had an appointment yesterday for Kaibo (Molly too!). I want to get to the bottom of the hair loss even though I know looking into it might open up a can of worms. They were both already at the college for physio (Kaibo) and acupuncture (Molly). Anyway, I had pretty much resigned myself to the fact that the Cushing's was back. I went in knowing we'd do blood work, arrange the ACTH and probably do an ultrasound. At the last moment, his IMS said oh we have a dermatologist now. Within an hour, the dermatologist had seen Kaibo, skin scrapings were taken, and she said ACTH probably wouldn't tell them anything (oh the full adrenal panel) and that if skin scrapings ok then start melatonin. Long story short, we found out he has bacteria on his skin. I was so happy. Strange but it seemed like a relief...not Cushing's then, right!? So, we leave with antibiotics and an appointment with the dermatologist in a month.

Today I got a phone call from the vet student working with my IMS. Blood test results are back. I don't have them in my hand but they were "consistent with diabetes OR Cushing's. Great. Liver enzymes have gone up. Student says finish the antibiotics and if his skin doesn't improve we need to test for Cushing's. Ok. Fine. Not the best news. She didn't say anything about CBC. For urine she said kidneys are working well. Glucose in urine (+3). About five minutes after I hang up she calls back. So, there's blood in his urine. We want another sample. Cue: freak out and panic mode. So, we have to take another sample in tomorrow.

Things I've noticed recently. He's had a couple of strange breathing episodes. Just a weird heavy breathing that lasts for less than a minute, has happened a handful of times over a few weeks. Panting occasionally (made me think ya ok, the hair loss is from Cushing's). A bruise on his side with a red ring around it (which I pointed out to the student yesterday. She said the dermatologist saw it). Otherwise, he's been happy, alert, good appetite (as usual). Blood sugar has been great. We were going to do a curve on Sunday but Brett dropped the monitor in water. Oops!

Thoughts going through my mind. Considering the amount of hair loss the bacterial infection is pretty wide spread, right? I'm not a vet but that seems logical. Blood in urine from that? Somehow he has an infection from a needle poke (possibly that bruise)? UTI? Just from the diabetes? I don't know. I know we will find out. I know it will cost me lots of $. But we will figure it out. I'm sad. Scared. I've opened up the can of worms. I want to close it. Tight. Anyone out there have experiences to share?

[Budsters Mom]

Hi Nikki,

Our boy certainly has a lot going on there. :o Let's look at how well he's doing otherwise.; His blood sugar has been great and he continues to have a good appetite. Happy and alert, awesome!:) So many blessings.;)

I know that scared, worried feeling well. I wish I knew more and could help with his issues, but I just don't know enough. Our resident experts will be popping in soon to help you sort it all out. In the meantime I'll send you tons of love, strength and healing energy for our little sweetie pie.

Hang in there Nikki, you are doing great! xxxxoooo

[Squirt's Mom]

No advise but lots of care and support to offer you and our sweet boy. Let us know what the outcome is when you can. We are right by your side, Nikki.

[molly muffin]

Hi Nikki, get the bacterial infection under control first.
Blood in the urine could be from crystals or infection, diabetic dogs can be prone to this just like cushings dogs are.
Don't go down the cushing road until you have these things figured out, as I would not want you to get false positives on a high ACTH, which is caused by infection in his system (skin, urine, etc)

First things first an baby steps. Clear up that skin infection and if it was a needle draw for the urine, then often there is a small amount of blood in the urine, so do a free catch and check that.

Hang in there! We'll stuff that lid back on the can and put it in a drawer. (empty!!)

hugs

[Trish]

Hi Nikki!!

Hope those antibiotics sort out the skin infection. Agree with Sharlene, need those things fixed before looking at cushings.. man alive it better not be cushings reappearting as that is PLAIN NOT FAIR!!!

Fingers crossed for the little man and lovely to hear from you!

xx

[kaibosmom]

Hi. The urine sample was free catch. Then, they wanted another one this morning, which we took free catch as well. I emailed the vet earlier in the day and she said they were looking into a UTI so I figured the urine sample from the morning was for a culture. Now, I just got a call from the vet student saying there was less blood than yesterday and our vet thinks that it is from the diabetes but they want another sample that is sterile so we have to take him in tomorrow morning so they can take one. Ok...why didn't I ask why!? He is on antibiotics for the skin so if it was a UTI (in addition) wouldn't that be affected by the antibiotics as well? I guess he's only had 2 doses, four by tomorrow morning. Anyway, that's the update so far.

I took my mind off of it being something sinister (cancer!) because he has not lost weight, his BG has been good, happy, alert, etc. We will get it sorted out but I really hate this testing and waiting!

Thanks for the good thoughts and encouraging (also calming) words!

P.S. Trish - Flynn looks super cute!!

Nikki

[molly muffin]

If you want to know about cancer, you check the ionized calcium. If that is in range, if he isn't losing weight and looking acting sickly, then doubtful is cancer.
(just been going through this with my molly because she had elevated ionized calcium, which is now back in range, so yay, but that is what my IMS told me and why she doesn't think it is cancer for my molly.

It is possible that the antibiotics for the skin will treat a UTI also, but not always, depends on what kind of bacteria it is.

hugs

[kaibosmom]

Well, I've had a very peppy boy on my hands for the last few days! Seems to be feeling better. Yet lots of strange things happening. Culture came back negative for UTI. So we are doing an ultrasound on Thursday. She's going to check his bladder for stones, the abdominal wall defect, and his remaining adrenal. His blood glucose has been out of control. High. We did a curve on Sunday and it stayed around 25 all day. Ugh. Might buy a new vial of insulin as his long acting one is just over a month old. That being said, we've used the same vial longer in the past. Kind of grasping at straws. I don't know what else to say at this time. I'll be in touch on Thursday. P.S". I have been following Molly's thread. I'll ask about the calcium...although I'm terrified'

[Budsters Mom]

Hi Nikki,

So glad to hear that Kaibo is peppy and seems to be feeling better. :p

I can't help much with the rest, so I'm sending love, hugs and healing energy to you both. I know you'll figure it out Nikki. You always do!

Deep breaths my dear and remember to cherish every minute you have together. Please keep us posted. xxxxoooo

[kaibosmom]

In the true Kaibo way, not much was discovered that would explain blood in the urine on his ultrasound yesterday. His bladder was perfect (they were looking for stones). His remaining adrenal gland was just a bit bigger than normal size, but to be expected as it's working for two. There was some "sludge" in his gall bladder so she wants to start him on ursidiol. Not sure if I spelled that right. What they did find, however, was free fluid starting to develop around the incisional hernia. Our vet consulted with a few people and they feel it's time for the operation to happen. She's talking with Kaibo's surgeon today. They would like him to finish the antibiotics for the skin infection first. So we are looking at surgery the first week of February at this point. Otherwise, he had an awesome day at rehab. Very strong. Doing things the rehab vet thought he couldn't do! She isn't putting him in the water treadmill because of his skin so he's been doing more stuff on land which he seems to be enjoying! The rehab vet said he's just so special. He's gone through so much and he's just happy and keeps on going. I hope that he stays strong for this next surgery'.

[Trish]

Typical, Kaibo and Flynn continuing to keep the surgeons in business!! Hope that skin infection is under control soon, would not want to do surgery if that was still an issue... want him ship shape to heal up well!! That infection is probably not helping the diabetes either... or else the diabetes out of control is leading to infection. Hope he gets back under better control soon! Sounds like he needs this surgery though, I remember you pointing out that lump right from the beginning.. gawd not what he needed. Pleased the little guy is doing so well in rehab, so much energy the wee man!!

[kaibosmom]

Thanks Trish! I just posted a video of him from rehab today! He climbed a full set of stairs without hopping!!! Some days it is discouraging as he does wonderful things at rehab and reverts to the old habits he had learned while his hips were dislocated at home. But a video like this is promising that one day, he will be able to climb stairs again. If he doesn't that's ok but there's hope and he will do anything for a treat!

As for the skin infection, he was to be on antibiotics for at least 4 weeks but I realized last week that they only gave us 3 weeks worth. Of course, I forgot to call and ask about that so he will have his last one tomorrow morning. Part of me wonders if he should be off for a few days before the next skin test anyway…I don't know! So, I will email tonight and ask, although his IMS is away on a trip, we can contact her boss to find out. I also am kind of unclear about what is happening on Monday (Feb 2) and if he needs to be fasted or anything for the ultrasound. And yes, unfortunately, it does seem like we can't avoid doing this surgery. He's lucky we can afford him ;) As an aside, we are starting to wonder if we should try to change our trip to Grand Cayman in April. The Canadian dollar has tanked and it is going to cost us so much money just to eat and do activities there, even though we have already paid for our accommodations and airfare. Sigh.

Anyway, here's the link to his you tube video from rehab today: http://youtu.be/hh7azLMy21c

[Budsters Mom]

Loved, loved, loved, the video. Our Kaibo is such inspiration for all of us, both two and four legged. Thank for sharing Nikki.:p

You go Kaibo! Show us how it's done! :p:p:):) xxxooo

[Harley PoMMom]

Generally they want a dog to be fasted for an ultrasound so that full belly won't interfere with the imaging, water is allowed.

Wishing you and Kaibo the best of luck on the visit with the IMS, keep us updated. ;)

[Trish]

LOL so cute, up he goes... think he would have kept going if there were more stairs for snacks!! Yes Flynn always has to fast for his ultrasounds, but like Lori says water allowed. Sharlene is in Barbados right now with her Canadian dollars, you can ask her when she is back how it went. Seems a shame to miss your trip. Hope the scan goes well xx

[kaibosmom]

Well friends....the verdict is in. Kaibo has a 4mm nodule on his left adrenal gland. Yep. You read that right. I seriously didn't know whether to laugh or cry. My response to the vet included a swear word! Almost tears then smiling as in WTF! For real?! Oh my! So LDDS tomorrow. Going from those results a HDDS test will follow. So my happiness about him having a skin infection to explain the hair loss - not Cushing's again may have been a premature celebration. Sigh. The skin test is still positive for bacteria so he is back on antibiotics. And, there is still sludge in his gallbladder so he's starting ursidiol. Good news...hernia looks good and no free fluid could be found today. We quickly discussed possible outcomes but really need to go one step at a time. Of course, the option is to remove the adrenal which would give him Addison's disease. So. Ha. Baby steps. The boy knows how to keep us on our toes.

[molly muffin]

Oh Nikki. Good grief. I swear I never know what to expect when I see a post from you. Kaibo is just, well, he just is Kaibo. A one and only if ever there was.

Let us know when you have some idea of what the plan is.

Definitely have to get that skin infection cleared up though first.

sheezz louise,
hugs

[doxiesrock912]

Ugh!!!!!!!
I feel your frustration.

[kaibosmom]

Oh my....will the skin infection influence the LDDS test? I didn't even think about that....

[Budsters Mom]

AWWWW Nikki, not the news I wanted to read today.I am so sorry.:o

There's only two fur babies that I know who miraculously bounce back again and again from so many issues. That would be our boys Kaibo and Flynny.

Sending many hugs, strength, wellness thoughts and butt scratches your way. xxxxoooo

[Trish]

Oh gawd, unbelievable. Just want to give you a big hug Nikki. Kaibo is such a little trooper... just worth mentioning Flynny also has a nodule on his remaining adrenal, his is 1cm and has not done much since it was first spotted over 2 years ago. But I guess the difference is his is not functional. I cannot remember, what was the histology on the adrenalectomy?

I am still in shock too, so not fair. More hugs coming your and Kaibo's way. I guess if this is functional it will explain all these other hiccups we have been seeing. xxxxxxxx

[Squirt's Mom]

Oh my word, Nikki. Kaibo is just full of surprises! My goodness. This is so rare! Leave it to our boy tho, huh? ;) Let us know what you discuss and what your thoughts are on how to approach this development. geez....

[kaibosmom]

It still seems so surreal to be thinking about Cushing's again. Functional. Non functional. Ugh. I have to refresh my lingo. Tests. Etc. sigh. Thanks for the hugs and support! I might have messed up his test for today. I think they said half of his food and full insulin. Confused. Lol

[kaibosmom]

So....looks like our boy has Cushing's disease again. Like seriously. Once wasn't enough? This is just so unbelievable but also so Kaibo. I don't even know what all of the numbers mean anymore and I'm still at work but here are the numbers I asked for....the sad part, for me, is that she says she thinks it is pituitary. Well, I didn't expect to hear that. I expected that since there is a nodule on the adrenal then it is just that. Same as last time. Sigh. High dose dexamethasone test on Monday. His vet was very kind and supportive on the phone. Saying we have done a lot and he's so happy and no one would judge us either way if we chose not to treat him or wait to treat him or whatever. My new term for him though is the "luckiest unlucky dog." Most people are supportive but there are some people who don't think before speaking who think we should "just put him down." Ugh. Know the whole story before opening your mouth people. Ok. Test results so I can clean my classroom and get home to Kaibo and Molly!

pre - 223 (I don't remember if she said nmol/u....again...need to brush up on my Cushing's stuff...)
4 hour - 90
8 hour - 117

We talked a bit about treatment and next steps but really we have to go with the HDDS test first and go from there.

Bye for now,
One sad and frustrated mama bear!

[addy]

Hugs, really big hugs, so we have a nodule on an adrenal gland, we don't know if it is functioning and we have pituitary Cushings?

[molly muffin]

Those would be nmol here in Canada Nikki. I don't remember what the range is off the top of my head.

hugs

[Trish]

Don't think Kaibo has pituitary Addy (although anything is possible with this boy!!) I think the concern is this nodule on his remaining adrenal has caused the cushings to come back. Although it could be non-functional benign nodule?? Hopefully Nikki can pop in again soon with an update!! Hope Kaibo doing OK! :) x

[labblab]

Trish, regardless of the nodule, amazingly I think they do believe it is pituitary based on the LDDS result (4 hour result was less than 50% of baseline). With a result like that, normally you would accept PDH as the diagnosis and not even bother with a HDDS. But I am guessing they are just wanting to run that for extra confirmation since the nodule is indeed present.

Here are the LDDS results as converted:

Baseline: 8 ug/dL
4-hour: 3.3 ug/dL
8-hour: 4.2 ug/dL

Marianne

[Squirt's Mom]

At the rate our boy is going, he is going to end up in the text books as one of the most rare of cush pups - those with 2 adrenal tumors PLUS the pituitary tumor. There will be a whole CHAPTER devoted to our Kaibo alone! :D

[kaibosmom]

Thanks Marianne for the clarification. Unfortunately, what you are saying is exactly what the vets believe. I haven't had much time to process it all. On Monday we were told about the nodule and I assumed (or hoped) that it was going to be straightforward the adrenal nodule was causing Cushing's and that was that. But no, Kaibo has to just keep being Kaibo. And yes, the HDDS test is to provide more information or confirmation of pituitary involvement. Our vet was very kind and her words touching. She talked about how happy he is and how full of life. She said the presence of all of the skin bacteria with the absence of something on the slide (sorry...I forget) alerted them that some sort of immunosuppression was present either from diabetes or Cushing's again. His recent blood work (I still don't have it) also looked more inline with Cushing's. The LDDS and blood work were both significantly different from his post adrenalectomy results. And yes, I would suspect he will have a chapter in a text book some day! They are already presenting on him at the university here. So his shirt yesterday was quite appropriate "local celebrity".

On a side note, he has a really gross elbow. It's been naked of hair for a long time and I ordered some "healing spray" for it from a naturopathic vet. I used it regularly for a bit then on and off because I kept forgetting. When he started the antibiotics it got red then a little puffy and red and now it's all swollen and weird looking. I asked them to check Monday but they didn't. So I asked Tuesday and again they didn't. I hope they look today. He's finally there for his fun rehab time. He seemed really mad on Tuesday when we were leaving and he hadn't had his play time. Lol.

Ok. I have to go for now. Have a great day everyone.

Nikki

[doxiesrock912]

Nikki,
I can't believe what I'm reading!
PDH and adrenal. His poor elbow too :-(

Hugs to both of you.

[Trish]

thanks for that Marianne, missed Nikki's post at the bottom of previuos page!! now up to date and ranting at the cushings gods on Nikki's and Kaibo's behalf, so not fair :(

[Budsters Mom]

Sooooooo not fair!:o:(

Big hugs Nikki ❤️💜💚💛💙

[kaibosmom]

Thanks for ranting at the Cushing's gods for me. It finally hit me tonight. All of it. I kept Kaibo in business licking my tears for quite a long while. In fact, I'm still teary as I type this. I essentially learned that he has 2 tumours this week. As for the elbow, they looked at it today and don't know what it is and figure it has something to do with the Cushing's. So, I guess maybe that is it…he's just going to have all of the things (symptoms) he didn't have the last time. I always passed over the info on calcinosis cutis in the past. I believe this is what they might think it is now. We already had an appointment with the dermatologist for Tuesday so the IMS said to just wait and see her and bring him in on the weekend if there are any changes. They checked to make sure it wasn't infected and that there was good blood flow to the area today. I really just can't believe it. Seriously. So, as of right now the plan is HDDS test for Monday, dermatologist Tuesday. We will likely get the HDDS results on Tuesday as well so next steps can be discussed.

I started writing this morning about how great the vet was when she told me. I was on my iPad and running late and I got sidetracked so didn't finish. She said that his surgeon, her boss, and her all sat down and looked at his ultrasound again. They discussed a lot of things. It sounds like they all agreed that he is doing really well (although, as if on cue, he has started panting on and off the last few days…go figure!) and if we chose not to treat him or remove the adrenal they support that and said we have gone above and beyond already. I get that…especially after more and more people (including my mom) ask "have you ever thought about just putting him down" or "have you ever thought about just not treating that". I appreciated that discussion/comments from the vets. I don't appreciate it from others. If we can medically manage things and make his life better we will continue to do so. When/if they tell us that we should just stop, we will do that. Oh now I'm getting all worked up again. He's only 7 and he's been through so much. He's such a fighter. He's still so happy and loving. I just can't imagine we would choose not to treat him but I guess we will get all of that sorted out next week. For now, I better go. It's the 100th day of school tomorrow. We are having a big party. I even used an aging app to make all of my students look old. The lady at the photo centre said she wondered what nursing home I worked at!!! Oh my I laughed so much. Such tiny little old faces and bodies…I guess it would have been a bit confusing.

One question to the veterans on here…has any other dog had the whole Cushing's trifecta? Yes, let's call it that. Oh my. :eek:

[kaibosmom]

Kaibo has s HDDS test tomorrow. I did a lot of reading and refreshing on my Cushing's info this weekend. So, it says dogs should be fasted. We were told it's ok to give him half his breakfast and half his insulin. What impact do you think that could have on the results? It's what we did for his LDDS too. Thought?

Also, can anyone give me info on Calcinosis cutis? Like does it go away? Can it be treated? Etc. he sees the dermatologist Tuesday so hoping for info then but anything would be appreciated. Knowledge is power!

[Harley PoMMom]

I think letting Kaibo have a small breakfast before testing is fine, one thing they are concerned with feeding is hyperlipidemia, which is fat in the blood, so I believe that small meal will be ok.

[kaibosmom]

Only update for today is that we saw the dermatologist. In true Kaibo fashion she said, I've never seen anything like this before. I had to leave him. She's doing a biopsy. I had a big cry when I got home. I'm struggling to pull myself together so I can go give hugs and smiles and teach my precious little ones. A few more days then a week with no students. I so need time to just rest and understand how I wound up back in this place.

[addy]

I'm here to give you a hug, sweetie. (((((((HUG)))))))))))))))


It is better to do a biopsy. It could be mites, an infection, so many things can happen with their skin.


I hope you can get some rest. I guess I have been wishful thinking that somehow that LDDS test is wrong, that maybe it is positive due to one of the other issues going on. I dont think I heard Marianne wonder about that so, I guess it is just me and wishful thinking:o

[Squirt's Mom]

If you didn't have a moment or three where you break down, I would worry. You and Kaibo have already been through more than most folk and yet you are being asked to face more. So you have that cry any time you need and know your family here is right by your side always, Nikki.

[Harley PoMMom]

We are definitely here for you Nikki, and we totally understand. Sending huge and comforting hugs, Lori

[molly muffin]

Hi Nikki, break downs are totally normal. We all have our moments after all and what you guys and Kaibo have been through, well, it's a lot of anyone to have to deal with.

I'm glad you are getting the biopsy done as that is the best way to tell exactly what is what.

Molly has a nodule on her adrenal gland too. It hasn't grown, at least from the last couple ultrasounds, but her cortisol problems started long before that showed up. So, lets just see whats what. Remember that cortisol can go up for other reasons besides cushings, such as infections.

big hugs!

[kaibosmom]

I keep hoping the LDDS test was wrong too. I should clarify, the biopsy was on his elbow growth. I guess it bled a lot when she aspirated it. She then consulted oncology :( to see if they thought she could biopsy it still. She called in advance to tell me what happened and that if it bled like that for the biopsy they might need to keep him overnight! Luckily, he is right by my side, sleeping soundly. It doesn't seem to bother him. It will take up to a week for results. The skin scraping still showed bacteria on the skin so we are continuing antibiotics for two more weeks. The IMS didn't call with the HDDS test. Still on pins and needles for that one. I'll keep you posted.

Nikki

[doxiesrock912]

Wow! I wonder why it bled so much?
Hoping for an easy fix.

We all need a cry-fest now and again.
Hugs

[addy]

I'm sure everyone is wondering why I push KetoChlor shampoo but I read a lot about skin issues and the articles all seemed to include a prescription shampoo. Has the vet tried Ketoc Chlor in conjunction with the antibiotic for the skin bacteria?

[kaibosmom]

No Addy. I haven't read about it. I will certainly ask! Thanks for the tip!

[addy]

The only unknown is the elbow problem, that it would not hurt that but I spent a month on the DVM 360 vet site researching skin problems.

I would put it this way when you ask, maybe something like"I have read many good things about Keto Chlor shampoo and since Kaibo is still having bacteria on his skin, I would like to try it. Would there be a downside to using it?";)

[kaibosmom]

Well, it doesn't look like there was any mistake...he seems to have pituitary dependent Cushing's. HDDS results:
Pre 179 nmol
4hr post >20
8 hr post 115

I have more to type but want to do it on the computer instead of iPad. So, we have to decide if we want to treat with Lysodren or Trilostane. And thoughts? He was on Lysodren before. I worry about the induction phase this time though since he doesn't have the symptoms he had before - excessive thirst, extreme hunger, panting. Ok...more later.

[Trish]

Hi Nikki
Well your day sucked! So sorry to hear the latest on Kaibo, how's he feeling? So hard to know what to do, I am absolutely no help with the meds not ever having used either but I am sure some of the others will help. Give him a kiss from me and Flynn and tell him we expect him to get through this latest hiccup like all the others. Xx

[doxiesrock912]

Nikki,
I think it's really personal preference. Lysodren erodes layers of the adrenal glands while Trilostane focuses on inhibiting the production of Cortisol.

Daisy's IMS felt strongly against impacting healthy tissue and she doesn't use Lysodren for that reason. What does Kaibo's doc prefer and have more experience with?

[addy]

Oh Nikki, well then their verdict is in.
What happened with the elbow? Did the biopsy come back?

[kaibosmom]

The biopsy from the elbow isn't back yet. I expect it next week sometime. I guess one of the moderators can update the tread title :( He is 7 now anyway. Might as well add the fact that he has PDH now. Man...I still can't believe it. I think we have decided on trilostane this time. It is hard because part of me wonders if we should go with Lysodren to possibly kill off the area of the adrenal with the new nodule. But, I'm really worried about how we would know when he's done induction since his symptoms are mainly dermatological this time. The IMS said she would cut his food so when he wasn't ravenous anymore we would know. I'm just not keen on that (not to mention what it would do to his diabetes). I am able to be home next week...mostly. So, we could do the induction. Things pointing towards trilostane this time are lack of induction phase and reading about giving it twice daily to better control cortisol spikes and how that is better for diabetic dogs. I keep reading about price but the price she gave me wasn't that outrageous. I asked about needing a baseline ACTH before starting either drug but she said it wasn't necessary. On one hand, looking at his skin and hair loss, I know this must be the right diagnosis. On the other hand, I so desperately want it to be wrong. I want to redo the tests after he is done antibiotics. Do the ultrasound again. Anything to change the outcome. I know, that's wishful thinking and I need to be realistic. I suppose we've been in denial long enough but it really didn't seem possible without his previous symptoms. Well, it's late and I'm rambling. I didn't get much sleep this week. I'm excited that there are no students next week and I get a few extra days at home to just relax and cuddle poodles. Oh, I haven't updated you on Molly! I think I mentioned we started her on selegiline for canine cognitive dysfunction at the end of summer. It was hard seeing her strange behaviours all summer. She did well for quite sometime but showed increasing anxiety and a return of some symptoms. In the middle of January we added gabapentin to her treatment. She is doing really well. She seems much calmer and, well, normal now. We are very pleased.

And yes Trish, my day really sucked!

[doxiesrock912]

Nikki,
I would absolutely repeat the tests once Kaibo finishes the antibiotics because any illness/infection affects cortisol levels. Hugs

[Squirt's Mom]

I would stick with Lyso in your shoes unless someone could absolutely prove to me there was some reason Trilo would be better this time around. You know Lyso, you understand Lyso, you know what to expect and what to look for. You know that it worked well in Kaibo before. I would also ask on the diabetes forum if there was a preference for diabetic dogs that also had Cushing's - does one or the other work better for a diabetic dog? (and I would trust them at k9diabetes before the vets. ;))

But, of course, I prefer Lyso to Trilo period. :D

[kaibosmom]

Well the Lysodren didn't exactly work last time. We would get through the induction phase and in to maintenance but then we couldn't stay in maintenance phase. In the end, we were told to take him off it completely and recheck blood work, ACTH, etc because they thought maybe he didn't have Cushing's. He was still 5 at the time so a few vets thought it was the wrong diagnosis. Plus his cholesterol got really high which some vets think was due to the Lysodren. In the end, that's when they finally found the adrenal mass. We never did treat again before his adrenalectomy.

[Trish]

Maybe it was hard to regulate with the lysodren because of the adrenal tumour as it can be hard to do. Hard to know with this new nodule if that is functional, plus they also think PDH? Tricky dicky Kaibo!

[addy]

Good point, Trish, I just read an article by Dr. Peterson about that.

I also though Leslie had a good idea about checking with K9 Diabetes.

How well regulated is the diabetes?

I too would wait to find out about the biopsy. Zoe's cortisol was so hard to control and then we took out a tumor in her vulva and I treated her skin and then it was easier. Good thought to retest.

[kaibosmom]

Hi. Yes, Trish, that was the consensus after the first go round when they found the adrenal mass…that that was why we were having trouble staying in maintenance phase. I did check in on my K9 diabetes page and had one response.

As for his diabetes, it has been so hard to control. I wonder now, when the Cushing's "came back" and how much that has influenced things as far as his diabetes goes. The last curve was disastrous but that was just around the beginning of January and all of this investigation. Perhaps all of the Cushing's symptoms were really coming to a head at that time. I don't know. Anyway, the reason why I started looking into the hair loss issue was because he hasn't had any trauma since July hip surgeries and his diabetes has been controlled. We have had really nice curves (*up until the last one) and symptom wise, he has been perfect. We tested his blood twice a day and were having nice numbers (around the mid teens) morning and night. Again, those started to creep up in December but it is still felt that he was being controlled.

Now, I will fill you in on the last few days. The last time I wrote I said I had more to say but wanted to do so on the computer as I can type much faster! Basically, at that time I was going to comment on the adrenal "nodule". What is the difference between "nodule" and "tumour" anyway…I must google! Our IMS has indicated that her boss and Kaibo's surgeon feel it is much different than his mass the last time. She clearly stated that if it looked like it did last time, they would be encouraging immediate removal. Trish, I don't think I answered that the histopathology was that his previous tumour was benign and functioning. Since the LDDS and the HDDS indicate pituitary involvement, it was suggested that we treat with Trilostane or Lysodren and monitor the adrenal nodule for now, every 6 weeks. Of course, the option is there to remove the adrenal and make him Addisonian. A tough decision to be sure. When they first told us of the ultrasound findings, that was my immediate instinct…get it out and treat for Addison's. There was some suggestion that the diabetes may be easier to control if he was Addisonian. My fear, of course, is that this nodule might be cancerous and metastasize and then we are left with no options at all. In the end, I feel that because it is very small, we will monitor it closely.

So, that leaves treating the Cushing's or as I mentioned, waiting and re-testing…hoping for false positives…even though the signs are clearly indicating Cushing's is present again, no matter where it is coming from.

Well, my friends, I have the biopsy results and they clearly point the finger at Cushing's so there is no more time for denial or wishful thinking. So, the pathology of the biopsy is that it is calcinosis cutis. The dermatologist was very surprised, however, I wasn't. I expected that to be the case, even though she said she has never seen it presented that way before. Ummm….hello…it's Kaibo…nothing is normal and he plays by his own rules…that is a well established fact! So, when I talked to her on Friday, she said that it was a very strange presentation, being on his elbow, and that we needed to start Cushing's treatment immediately. Monday is a holiday here so I quickly made the decision for trilostane, got the email sent to his IMS and the prescription filled.

Brett and I were both leaning this way, even though we know Lysodren/mitotane well from before. I know I say the ravenous appetite isn't there but he sure eats quickly so I suppose we could have used that as an indication that induction phase was complete. He just simply isn't up every hour begging for food and scratching at the pantry. As his main symptoms are dermatological this time we were leaning towards trilostane from the beginning. We looked at the fact that his cholesterol is high already and that last time it was high and then got even higher with prolonged mitotane use. The final part of our decision, besides the (hopefully) easier introduction, is his diabetes. Some of the reading I managed to find was that the twice daily dosing of trilostane makes cortisol levels more steady throughout the day and that can help the blood sugar. Further to that, trilostane is approved for both PDH and ADH so hopefully, we will not need higher doses if on the off chance, the adrenal nodule is functioning.

So, that's it. Our boy has Cushing's again. It's hard to believe. It is not fair. I don't know what it is trying to teach me. It is all of those things but I don't think we can deny it anymore. I just picked up the medication today (in a big blizzard!) and we decided to wait until the morning to start. I am off most of next week so feel comfortable starting him at this time. Our hope is for his hair to grow back, for the elbow calcinosis cutis to resolve itself (it's pretty gross!), and for his diabetes to be even more controlled, hopefully to the point where we can use only one insulin. I came across one lonely article that seemed to mention some of the more rare symptoms, of the skin and one that caught my eye of muscle stiffness. I might still have it open and will attach it in a link if I do. It was a "aha" moment for me anyway as i have struggled all of these months post FHO wondering why he still walks so stiff legged. Why his muscles are constantly tight. Why he won't bend his knees as much as he should because there is no reason not to. Maybe, just maybe, it has been Cushing's all along. It might be wishful thinking (I apparently do that a lot!) but deep down, I hope that beginning treatment for Cushing's will help with his hips too. Don't you think the kid deserves a break? Fingers crossed. Yes, this is me accepting Cushing's. Embracing it even…even though I don't understand and I wish it wasn't happening. Just as we everyone else here wishes the same. Again, i am so thankful for all of your support and understanding. For letting me babble and try to make sense of it all. Much gratitude and love to you all, especially on Valentine's Day!

Nikki

P.S. I didn't post all info from the dermatologist. She wants to start a topical called DSMO but then she went on about how we have to use gloves to put it on, watch who he is in contact with (I think there was something about that, my notes are downstairs), and that it is really stinky. Yikes. I'm unsure about this and it made me a little uneasy, although she is very gung ho to get it started when his stitches come out. I mean, I want the calcinosis cutis on his elbow to resolve badly, I really do, but I'm not sure I'm ready for that kind of potent sounding treatment. I have read that the trilostane will often help resolve it within 3 to 4 months…a long time, yes, but if I can save him from stinky, toxic sounding cream I'm all for it. LOL. I will do some reading but honestly, baby steps. I'm just accepting treating the Cushing's after all. :)

[kaibosmom]

I wrote a lot above, but here is the link I was referring to that mentions muscle stiffness…only briefly, but I don't recall ever seeing that before…then again, he had the obvious signs before so I wasn't reading all of the way probably ;)

http://www.veterinarypartner.com/Content.plx?A=635

Interesting that this article on Calcinosis Cutis references diabetes as a cause and the appearance of it on elbows. I'm not indicating that it is from the diabetes but did find it interesting.
http://www.nevetdermatology.com/calcinosis-cutis-in-dogs/

[kaibosmom]

I just found another spot on his skin. Well, I noticed it last night but it is bigger tonight. A black spot this time. Different from his elbow. I am sure it's another CC. I am so devastated. Why this? Then I've been reading trilostane isn't very effective for Calcinosis cutis. Oh my. Have we made a mistake choosing it this time? All I can say is F$@k Cushing's.

Nikki

P.s. We started trilostane today. 2.5 mg twice a day. He weighs 5.3 kg right now.

[Trish]

Hi Nikki

I do not know much, if anything about CC maybe asked the admins to add it to your thread title so ppl with experience like Renee will see and pop in with some advice...

I am with you and wondering how long the underlying cushings has been there, you have had such a struggle with the diabetes... maybe this will be a blessing in disguise and once you get him regulated it might just help with his sugars too. I think I agree with the keeping a close eye on the other adrenal nodule, I think you know Flynn has one of those too and we scan it regularly and it hasn't grown in over 2 years now. Hopefully it is benign and not causing the cushings but crikey that Kaibo has broken nearly every rule so far but I would be happy with the scanning and checking.

Cannot believe you are all facing this again either, so not fair :mad: but you will work through it again and I know Kaibo will keep on trucking along too xxxx

[labblab]

Hi Nikki, I went ahead and edited your thread title to add the news about the PDH and CC :o :o. I hope that is OK.

On a positive note, I think most of the comments here about the lack of success with trilostane clearing CC are fairly dated. We have subsequently had several dogs who have definitely shown resolution/improvement of their CC while taking trilostane, so I think that is one worry that you can push aside. :)

Marianne

[kaibosmom]

Thanks Marianne. I hope there is resolution of the CC. Now I'm just in a rush for the trilostane to start working before even more spots start. So unbelievable. If you want, you can change his age, he's 7 now...hard to believe.

[labblab]

'Tis done (Age change)! ;)

[Renee]

First time visiting and posting on your thread, but I wanted to come in and ease your mind a bit about the CC, since I am intimately familiar with this dreaded side affect!!

First - I truly believe using DMSO is an outdated treatment. I used it for a few weeks (maybe 2?). I was disgusting and did absolutely NOTHING for the CC. Knowing what I know now, I can honestly tell you to not waste your time.

The only cure, and I mean ONLY cure, for CC is to get the cortisol into the proper range and keep it there for long-term. You'll want the cortisol to be below 5 ug/dl for an extended amount of time in order to see significant resolution of the CC. My pug went off her vetoryl for 4 weeks (pancreatisis episode), and within 2 weeks, I saw her CC reemerging. It took a solid 6 months for us to resolve the worst of the CC.

Some things to keep in mind:

1. It will get worse before getting better. The lesions that are below the skin will continue to come up and bust through. Even as you lower the cortisol, this will happen. They are there now and need to work their way out.

2. They are easily prone to secondary infection. A course of abx every now and then is a good idea.

3. A tea compress can ease some discomfort, as can tramadol, when needed. I used tea compresses on the larger lesions.

4. At their very worst, the lesions may bleed, crack, and appear very, very angry. When they begin to dry up / dry out, you'll know you are on the way to recovery. The scabs will build up and pull away. I usually pulled the scabs off when I saw they were ready.

5. Try to keep them dryer, rather than wet or moist. I think the moisture leads to bacteria and infection. Drying them out seems to help them heal better. Some people used weekly medicated baths, but I chose not to do this. In fact, I didn't bathe Tobey until the worst of the lesions were healed up. Personal choice on my part.

I have an album on here showing their progression. I haven't updated it in a while, but now that Tobey's CC is in 'remission' as I like to say, I can just feel the sores, but they are dry and flaky, not angry and open.

[kaibosmom]

Thank you so much Renee! I just don't understand why all of this is happening but I just have to deal with what is happening and learn about it. So he could have a bunch of areas waiting to come through the skin? I guess I don't understand the process. Maybe the elbow hasn't gone through all the stages. Ugh this is so overwhelming but knowing that we just need to get the cortisol under control and that will help is comforting. As with everything, it sounds like baby steps are the way we will get through this. We will get through it as unfortunate as it is. Thank you again.

[Renee]

Yes, areas that are already formed under the skin will need to work their way out. We had new lesions appearing for a few months after starting vetoryl treatment. But, they never got as angry as those first lesions before treatment. They healed quicker too.

There are many stages. You can and will get through this!

[molly muffin]

Sending you big hugs Nikki.
I know this is so very unfair with everything else that has gone on before, but you can get through it.
You're very smart, so you'll learn about this and how to treat it and you'll learn how Kaibo responds too.
Huggers!

[kaibosmom]

Thanks Sharlene. I've had kind of an off day so thank you very much! He had rehab today and the dermatologist aspirated the new spot. I didn't hear anything so I'll go with it's ok. I'm trying not to get down on myself for not doing the Cushing's tests earlier. I can't change things so there isn't any sense beating myself up over it. I know that. I do. I'm just scared and worried again. His rehab vet sensed my distress today and was very kind. She was with him through all of the other stuff when he was so little. She said this was totally different this time. Her words were so supportive and kind. I know he's got the whole college rooting for him! The other thing that got me down is that I sent an email to boss vet about our IMS. Her residency is ending soon so I sent an email in support of keeping her here. Turns out she didn't apply for the position here. So, I'll have to start again. Not the end of the world but she's been a big part of our lives for three years now. But you know, it's just life....ups and downs...just life. It's how we grow and change and realize we are stronger than we think!

Oh...and am I a bad mom for thinking if the CC gets bad and we can't control like last time we could remove the remaining adrenal? Eek. The thought crossed my mind. I'm not going to lie. Then, today, as I waited for Kaibo to see the dermatologist the person next to me had a dog with Addison's. It was in distress. So, don't worry, I'm still not rushing into that one. I hope, like Flynn, the adrenal nodule doesn't change.

Nikki

[molly muffin]

Ask your current IMS (too bad she didn't want to stay there) who she recommends to step in and take over Kaibo's case. Get her recommendation, because she knows him so well, she should know who would be a good fit. Then ask her if that person can sit in on your appointments so they are fully up to speed with her regime to take this cushings on and get it under the best control. That way they are all on board prior to her leaving.

We'll get through this! Remember, having a bad day is normal, it is just all overwhelming right now, but when push comes to shove, you will grab that cushings bull by the horns and wrestle it down and away from Kaibo.

(love that analogy) hahahahaha

hugs

[kaibosmom]

Ha ha! Yes. I added more to last post while you were replying FYI.

[kaibosmom]

Oh my...spoke too soon. Dermatologist just called. She consulted with surgery and oncology and they've all decided that new spot needs to be biopsied. She gave me a name of something but honestly, I already forget. I had started crying....you know....because today was a hard day for whatever reason. It's the oncology word that gets me. At any rate, apparently this doesn't look like CC. So he is going to have rehab Thursday then get poked. Sigh. But, then we will know.

[molly muffin]

I thought they had done a biopsy already on the elbow? So are they thinking that it was an incorrect diagnosis? How are his white blood cells?

Lets not get too upset just yet. We need to know exactly what we are dealing with.
Remember things can be removed too.

Yea, lets not go down that Addisons road just yet, they each have their own trials to deal with.

Hang in there Nikki. I know that oncology word is a scary one. I've been through it recently with molly too before they decided that it was unlikely to be a cancer problem. Still, a couple months of worry that we don't need when there are other things to think about.

[kaibosmom]

Oh my...did I neglect to write about a new spot I found on him? I must have. I noticed it on Saturday. Small. Looked kind of black. So I thought a new CC. Appearing more in the way I've seen in pictures (because let's face it the elbow was weird presentation but that biopsy did confirm the CC which fast tracked my treatment decision). Anyway, it grew quite a bit bigger from Saturday to today. So, I had the dermatologist look at it when he was there for rehab today. She just called me and said there was mostly red blood cells and some white in there. Then she went on with a name and probably nothing but if it is they have to look for the cause and if it's metastasized and all that...which of course got my crying. So, does that clear things up? Not elbow. On his abdomen at the top of his leg. Looks like a big blood blister. Oh, our Kaibo is full of surprises. He could stop now. Really. Biopsy Thursday with a local block. After rehab. I said he has to have fun first!

[molly muffin]

Arrggh, well you could have said already and I mistook it for same spot, but new, growing fast, best bet really is the biopsy. But remember, no putting the cart before the horse. Whatever it is, you will deal with it just fine and so will Kaibo.

Now, wipe those tears and just do something totally relaxing and none medical related! Just for tonight, give yourself a break and say, tonight is mine. Then tomorrow, pick a time and do the same. You have to give yourself some stress relief breaks. For your sanity! :)

Big Hugs!

[Budsters Mom]

Hi Nikki,

I've been reading along,but haven't been able to contribute much.:o I have never been much good with the technical stuff.

I can't believe what's happened and continues to happen. You have actually passed the limit on how much is too much. :o:eek: Enough Already!!!!

Instead, I am sending you tons of love and healing energy. You are a wonderful mama to our sweet boy. Continue to follow your heart. You are doing great and a wonderful example to us all.:p

[addy]

Thinking of you and Kaibo today. I hope he indeed had fun before the biopsy.

We will all be here with you for moral support.

[kaibosmom]

Hi everyone! I just wanted to stop in and say that Kaibo had an excellent rehab session today. He does do much better when he gets to go twice a week, but it really is too expensive to keep doing that so we are alternating once a week and twice a week.

As for the biopsy, he was a champ! I almost called it off last night but we decided to go through with it. So, the dermatologist said that she got all of the mass, but the margins wouldn't be clean. I am sure it will be nothing so that shouldn't matter anyway. She was amazed at how calm and brave he was. I said, yes, that's just Kaibo. Not phased by lidocaine injected near his groin and he apparently didn't really like being held on his back. One student held him, one held his leg over to the side a bit, a surgeon was on hand with something to cauterize if he bled too much, and the dermatologist took the biopsy. I guess he was really still and patient (of course, he was…that's not really news to me). So, in 3 to 5 days we should have the pathology report. I keep forgetting to ask for the print outs of all of his tests from the last month. I did schedule his ACTH stim for March 2. I hope I remember to get all of the stuff before then though!

Hope all is well with you and your babies. I don't have time to check in tonight. I've had most of the week off (meetings today and tomorrow) but have focused only on Kaibo (and Molly) so no school work. Now I'm starting to panic though so time to do something! Bye for now.

Nikki

p.s. thanks for the supportive messages Sharlene, Addy and Kathy!

[Budsters Mom]

Yes, Kaibo is a champ. He has always been in our eyes and always will be. ;):p

So glad all went well at rehab and his biopsy is done. :p

I know it's hard and EXPENSIVE, but do your best to take care of yourself too. We worry. Can't help it! So many aunties around here. ;)xxxxoooo

[Squirt's Mom]

Glad that is behind you all now and I pray for a good path report. He is so amazing!

[addy]

whew, that is under our belt!!!.

Maybe this weekend, you can put it all in a drawer for a day, lock it up and just be you and Kaibo.

Hang in there, you are doing really well considering the load for you and Kaibo. It has been a lot.

hugs

[kaibosmom]

Well, I think Kaibo is going to go to school with me today! There are no students and it will be nice for him to hang out with me. Molly will stay home. I think she will prefer that. He seemed a little down in the dumps this morning but is quite bright and alert now. He's looking at me ever so sweetly, hoping to get some of my lunch! I was feeling pretty happy last night, kind of relieved. Not sure why. I just think I needed the week with no school stress to help me readjust to all of this again.

[molly muffin]

A week of no school, the biopsy is done now, and sometimes over all, we just need a bit of down time and to take a break.

hugs

[kaibosmom]

Omg...I didn't check in last night! I got the best birthday news last night. Kaibo's biopsy was benign. Some strange Kaibo thing where they think a blood vessel just popped out or something...Brett wouldn't let me listen. Ha ha. Our sweet IMS called because she didn't want me to keep waiting and the dermatologist was busy, oh...and he gets to come visit the students at school today!

[Squirt's Mom]

YAY! What good news for our sweet miracle boy! :cool::cool::cool:

[molly muffin]

Well that is Kaibo for you. Something different. So glad it was good news!!! Happy Birthday!!!!

hugs

[kaibosmom]

Hi friends! Kaibo isn't getting any luckier these days. He was groomed last Sunday and since then, Brett, and a few people at work (he got to come to school with me the other day to see kids!!) commented about his eyes. Usually people are in love with his eyes. Lately they are saying, he looks sick, they look sore, etc. Well, since he was in for ACTH test today I asked his IMS to check his eyes. Seems like he is squinting on the right eye and it is a bit more closed than the other. Well, what do you know….the boy has cataracts. Diabetic cataracts. Isn't that awesome? So, he has started voltaren drops as of tonight. His IMS also wants him to see ophthalmology…the only service he hasn't seen (I'm including the unofficial consultations with oncology in the last few weeks as sufficient interaction with them!!!). So, there you go…he's seen everyone.

As for the ACTH results…they are already back!!! I talked to his IMS on the phone so didn't ask much but now I'm wondering if we should change his dose or not.

Pre cortisol, resting 109 nmol/L (<20 to 270)
Post cortisol 188 nmol/L (230-570)

So, IMS wants his dose increased from 2.5 mg twice a day to 5mg twice a day. She said she wanted the ACTH to be perfect.

We are doing a curve on the weekend.

Ok, I have wasted an hour trying to get motivated to do report cards so I better get at it now ;)

Nikki

[Squirt's Mom]

My goodness, Kaibo! Well, most every system has been covered it does seem like so no more surprises, right? Right?! :D

Bless his heart. So many obstacles placed in front of this little guy but he just keeps on going, over, under, around but he keeps going. What an amazing little guy....and what an amazing mom he has. My little Redd has cataracts too and it is sad to see him losing more vision by the week it seems. His heart won't stand surgery to remove them so we just cope. He is quite high strung and I don't see him handling blindness as well as Trink or Brick sadly. I have no doubt WHATSOEVER that our little Kaibo will take this in stride as he has everything else that has been put on his rather large plate!

[molly muffin]

Oh poor Kaibo. You really are hitting up every department.

Your IMS does know that the cortisol can continue to drop even at 30 days right? on the same dose? Seldom do you increase after 14 days any more because of that unless the cortisol is still really high. His isn't really really high.

hugs

[doxiesrock912]

Cataracts! They can be treated thankfully. Hugs to you and Kai.

[kaibosmom]

Hi everyone. I can't believe it has been over a month since I have stopped in. There isn't much to report as far as Kaibo goes. He had a 2nd ACTH stim that showed he was not in the right range so his trilostane was increased again. I'm not seeing many changes in the way of his skin or hair or even the calcinosis cutis getting better…don't get me started on the diabetes. He's happy and looks great though. But then again, it is our boy Kaibo so he is happy regardless of what is happening to him. I was away for about 12 days and his blood glucose usually goes lower when we are away (not entirely sure what that means!). It did go down to the high teens morning and night so that is an improvement. We are doing a curve today. It's not that great. So at this point I'm not sure if he is being overdosed (they never did decrease his insulin when he started trilostane) or what is going on. I'm so fed up with the diabetes. Almost 2 years and only short times of actual control…no wonder he has cataracts.

We had our cataract consult on Wednesday. They are classified as "immature" at the moment and we were given the go ahead to use our judgement and not rush into surgery if we weren't comfortable. I'm not ready for it at this stage. honestly, I want the kid to have a summer where he isn't being sliced open. I don't want him to go blind but if we keep an eye on it (ha ha…) then hopefully we can still intervene at the right time.

I'm going to add his LDDS and HDDS results as well since I didn't have those before either

Feb 3 LDDS
pre 223 nmol/L (<20 to 270)
4hr 90 nmol/L
8hr 117 nmol/L
Interpretation: supports Cushing's disease; pituitary dependent; recommend HDDS

Feb 9 HDDS
pre 179 nmol/L (ref <20-270)
4hr <20 nmol/L
8hr 115 nmol/L
Interpretation: suppression at 4 hour mark most consistent with pituitary dependent Cushing's

Here are his ACTH results as I never had the actual numbers before.

March 2 - 14 days after starting trilostane
resting 109 nmol/L (<20 to 270)
post 188 nmol/L (230-570) Low
goal is to be at 41.4 to 152 nmol/L when being treated with trilostane

at this time, we increased only his evening dose so he was getting 2.5mg am and 5mg pm

March 27 (there was some stuff going on and we wanted to do the ACTH stim before we left on holidays)

ACTH Stimulation Test: Pre- 104 nmol/L, post- 192 nmol/L. Optimal control with trilostane therapy is reported to be a post ACTH cortisol of 41-152 nmol.

At that time, we increased his trilostane to 5mg twice a day. It will be interesting to see where it is next time. They wanted a test 3 to 4 weeks after changing the dose. I am not sure if we will do it this week or next. Kaibo's vet is off for the next 8 weeks studying for her board exams and finishing her thesis. So I'm not entirely sure how to book his appointments since her supervisor doesn't normally see patients as far as I know (and that is who is in charge of us right now).

With the whole eye situation I have to say I had some real anger for a day or so there. Just the whole, what if this and what if that and thinking we have been failed by so many vets along the way. I get he is a difficult case, but it always seems like we are waiting. Wait for the diabetes to get controlled. Have surgery. Wait for the diabetes to get controlled. Have a lung infection. Change the insulin dose. Wait. I think you get the idea. I had my day of pity and sadness and gave myself a shake. I mean, we can't change what has happened. Being mad isn't going to change things for Kaibo (or for us). So, it is what it is. But that doesn't mean I can't be more forceful now. That is the plan but I know I will still get told more waiting. Wait until the Cushing's is under control then we can deal with the diabetes. His body is not responding well to the constant high BG so I am going for a change. I don't know what the outcome will be but I hope it is something. Any other advice??? I know we are all tired of Cushing's disease and I know we all wish it was all a bad dream. And you know, this feels bad to say but I know you will understand, being away from him was hard but to have a break from the blood testing, the insulin, the trilostane, seeing him without hair…it was really, really nice.

OMG….I didn't tell you….we finally got to Kaibo beach. It was awesome! I did what I said too and took enlarged pictures of him and took photos of him all over the beach like a crazy woman. I can't wait to get some little doggy shirts made for him!!!

Hope all is well with you and your pups. I will try to catch up with you all soon.

Nikki and Kaibo

[Budsters Mom]

So glad to hear from you Nikki and to get a report on our Wonderboy! :p

Yes, we can all learn so much from Kaibo. He is such a trooper who remains happy inspite if it all. I love that about him!:):):)

Sorry I can't help with all the technical stuff, so I will send you, hubby and our boy tons of love and tight hugs instead.

You are such an inspiration to us all!

[doxiesrock912]

We all know the frustration of waiting. Kaibo is amazing! Take your cue from him. He's happy which is wonderful considering everything he's gone through and continues to go through.

A beach named after him.:-) Can't wait to see the pictures!

[kaibosmom]

Hi. I just wanted to pass on to you that the IMS said we should increase his insulin today based on his curve. I said no! Not until we get his ACTH stim back on Thursday (or Friday) and we talk about what is going on. I mentioned that from my research I see that most Cushing's dogs with diabetes have their insulin doses decreased when starting trilostane. This was not done for Kaibo. I also questioned that if his cortisol is getting lower, shouldn't his need for insulin also decrease. He is showing the opposite of that so I"m wondering if he may be getting too much insulin and displaying the Somogyi effect. Now I know nothing about that other than what I have read so who knows. I hope I didn't come off as being rude! So the ACTH stim test is on Thursday. I'll keep you posted.

Nikki

[kaibosmom]

Hi. Just popping in with Kaibo's latest ACTH stim results. His pre was 85 and his post was 165nmol/L. Target range for trilostane therapy is 41.4 to 152 nmol/L. So, the IMS did not want to change his dose as he is close to the target range. He will remain on 5mg twice a day. His BG has been all over the place and we recently stopped the Humulin R. It actually seems to be nicer values at meal times but we don't know what is happening during the day. So we will do a curve again next weekend to see what things look like with no Humulin R. We are also changing his dose according to his pre-meal BG. He has responded well to the new medicated shampoo. His skin looks a bit better already after only 4 baths in it. The dermatologist said that the hair should grow back, there is no reason it shouldn't, once his cortisol is in check. So, fingers crossed. He has had a marked improvement in his walking as well. He's very peppy and wants to run a lot too. He looks different running but it's his new style and he's happy :) That's all for now.

Nikki and Kaibo

[molly muffin]

Eeek, I missed the last update, sorry about that.

That is really good that his cortisol is at a better level, that should have a positive effect on his insulin. So crossing fingers on that.

That is great that he is peppy. A happy Kaibo is a joy.
Hair goes in cycles so I expect his hair will come back in fine once he gets through the cycle with a good cortisol level.

[Trish]

Hi Nikki

Hope the latest insulin increase has helped and Kaibo I think, will always be one peppy pup!! Gosh he is rewriting the vet books that boy with all he has had go wrong, not fair but Kaibo being Kaibo is like... ahhhh yeah whatever, let me out for a walk and find me a bark box :D He is lovely! x

[molly muffin]

I see the ads for the barkbox on facebook and I always think of Kaibo.

[Trish]

Flynny would love a bark box to arrive on his doorstep! Would have to hold him back, he already thinks any delivery is for him and hops about and I do let him open them as he is an expert present opener :) those ones with the wide sellotape stump him though hahaha

[molly muffin]

Molly being the diva she is, fully expects someone to open them for her and present it on a gold tray. ROFLMAO!

[Trish]

Yes, well she always been a little princess... and she has a couple of servants to do her bidding, so no need to risk her teeth ripping into a box..... don't forget the white gloves :D:D:D:D

[kaibosmom]

Hi gang! I should have posted this yesterday as i am just about to email the vet but here are Kaibo's ACTH stim test results from yesterday (May 26).


ACTH Stimulation Test: Used to determine control of Kaibo's PDH while on Trilostane. When monitoring trilostane therapy, ideally would like to see a post ACTH cortisol of 41.4-152 nmol/l [from Vaughan, MA,
Feldman EC et al Evaluation of twice-daily, low-dose trilostane treatment administered orally in dogs with naturally occurring hyperadrenocorticism JAVMA 232 (9)]. Kaibo's pre value was 123 and his"post" value is just above the listed target range at 166 nmol/L but we are going to leave the dose here for now because sometimes it takes more than a month on a higher dose to see the appropriate response on the ACTH stimulation test. We are so close to our target range that I am not going to make any adjustments to his current dose of trilostane.

His last ACTH was April 30. Pre 85 and post 165. He has been on the 5mg dose (twice a day) since March 27. In a way I get not increasing it, but on the other hand, I'd like to see his skin get better (the baths are helping a lot). He's had super duper energy lately so i was actually thinking the results would be better. He's still doing well on just one insulin. He still has some highs (27 to 30+) but mostly staying between 11 and 19 pre-meal. What do those of you with dogs on trilostane think about this?

p.s. Trish we didn't increase his insulin. I thought he was being overdosed. Turns out that might have been true. He had a strange episode one night and the vet told us to stop the humulin R. She also put him on a varying dose of detemir insulin depending on his blood sugar values. It sucks because we are back to testing him twice a day but he is definitely responding well to the changes. I can imagine Flynny loving the Bark Box. I can also imagine Miss Molly expecting it to be handed over to her. LOL. Our Molly just barks at her servant boy Kaibo to get it open, then she gets the treats :)

[Trish]

Hey, those test results sound good!! Hopefully further improvements with the new insulin too!! I am sure Kaibo is a great little servant boy!! It seems most Molly's around here are a bit diva'ish :D

[kaibosmom]

Sweet mother of pearl!!! I just typed a long update, making sure I was logged in, etc. and when I hit reply it said I was not logged in and I lost my message. Geez. Let's see what I can remember…ugh, so frustrating!

First off, someone needs to change our title to 8 y/o!!! Yes, Kaibo had his 8th birthday on June 26th. What a great day. It's hard to believe what that little guy has been through in 8 years.

Then I yammered on about his puffy elbow, which confirmed for us the recurrence of Cushing's when it came back testing as calcinosis cutis, although in a strange presentation being on his elbow. Well, the elbow had gotten much smaller on his own which I chalked it up to Cushing's being under control (well close to the right range) and diabetes being under control. We had seen improvement in his skin from the twice weekly medicated baths and we were starting to see some new fluff grow back, even if very thin, it was there, slowly filling in some naked spots. June 13 we were at the lake and I noticed his elbow was huge again. The following Monday, I called the dermatologist. She was surprised to hear from me as she had checked in on him recently when he was in for rehab and was pleased with his progress and the smaller elbow. So she wanted to see him of course. He went in to see her and she did skin scrapings and a fluid sample from the elbow. The fluid was tested and cultured and came back negative for cancer and infection. The skin scrapings were positive for bacterial overgrowth so he was started on antibiotics. During the course of these antibiotics, his skin has gotten worse! I was upset about this and mentioned this in an email to his IMS specialist when I sent her his last curve results (they were very good by the way!!!). Long story shorter, I made an appointment to see her as I knew her time was coming to an end and she clearly has been very busy and unable to email us back. So, that appointment was today (which as I found out was also her last day of work with patients).

Boy am I glad I took him in to see her in person. She asked a few questions and before long said, his Cushing's isn't controlled. Well, I could have done a big face palm. Why didn't I notice? The skin getting worse. Yes. Drinking and panting more? yes, but it has been super hot here so I didn't think much of it. Until last night actually when he just started panting out of the blue throughout the night. But, just ignored it or chalked it up to the heat and that maybe his BG was off (our monitor hasn't been working so we haven't been testing!). So, ya….he is having an ACTH test tomorrow. I'll keep you posted on the results.

I know I had way more detail the first time but it is now late and I can't ramble on. I had added two more things.

1) he is still on antibiotics. is the ACTH test going to be accurate? I think I read something about this along the way but forget what the scoop is there.
2) I booked him in with a specialist in Edmonton. The clinic deals with tratraditional Chinese Medicine for animals. I was intrigued by the clinic and what it might do for Kaibo after his rehab vet recommended it. Of course, at the time, I was under the impression his Cushing's was controlled and his diabetes was controlled for a couple of months so why wasn't the skin getting better or hair growing back? I'm no longer sure what I should do if we find out the Cushing's is not under control. Will it be worth going? It's super expensive ($285 just for the exam and we have to travel so need gas, hotel, food, etc.) but yet I am interested in what they might say regarding nutrition and what herbs might help him and how. Thoughts?


Ok. I'm taking a copy of this before I post. I'm still so mad…my first post was much better than this ;)

Take care.
Nikki and Kaibo

[doxiesrock912]

Boy! Kaibo just keeps on rolling with the punches! I'm sorry that you're going through all of this. Hoping he's controlled again soon. The diabetes is doing well still, right?

I have a saying about technology, "it's great when it works."

[kaibosmom]

Well go figure....Kaibo's Cushing's is well controlled!! Obviously good news but it doesn't explain this darn elbow (now diagnosed as a hygroma) or his skin getting worse (who thought that was possible?). So, ya, where do we go from here? To an "alternative" vet! I'm happy we booked that appointment. I'll keep you posted on our journey!

Oh, ACTH results. Pre 85. Post 116. This is better than last time and he did continue to get more control. Clearly not changing the dose was best. So, it's been well over three months since his last dose increase and values continued to fall. Last time he was 162 post, just above the top of ideal range of 152 post. Interesting :)

[Budsters Mom]

First of all, Happy Belated Birthday Kaibo!!!:p

So happy to hear that his Cushing's is well controlled.:p

So his elbow and skin issue is next. You'll get it figured out Nikki. You always do. Please keep us posted on our Miracle Boy. He is such an inspiration and so are you!:p

Kathy

[molly muffin]

Yay for control but yea I was thinking the same thing. Maybe he slipped control but that doesn't appear to be the issue.
Hopefully the alternative med docs will have some ideas.

You are doing great though and I've seen kaibos pics. He is looking very happy even with a sore elbow.

Belly ripubs to him and Molly

[Squirt's Mom]

Happy 8th Birthday, Kaibo!

I changed the title to reflect his new age! :D Eight years old and has already been thru more than most pups will ever have to face - and our sweet little Kaibo just keeps on keeping on! He is one tough dude! :cool::cool::cool:

Let us know how it goes with the alternative vet. TCM has been around for centuries and is effective - I use a TCM formula for myself. It tastes like ancestor sock crud soaked with moldy mushrooms in bug pee but is has helped! ;)

[molly muffin]

TCM has been around for centuries and is effective - I use a TCM formula for myself. It tastes like ancestor sock crud soaked with moldy mushrooms in bug pee but is has helped! ;)

Well that was a visual or something for sure Leslie! I rather had to take a drink to clear my palette after reading that description!!! hahahaha

[kaibosmom]

Hi gang! I really can't believe it has been so long since I posted. I have checked in a few times but didn't post. Came to post but then didn't for whatever reason. Now I have a reason. LOTS has happened since my last post. I'll quickly bring you up to speed.

First of all, Kaibo is 9 years old now! He really responded well to the Traditional Chinese Medicine protocol we put him on last July. In December, we added a herb that promoted hair regrowth and what do you know, after a few months, he grew all of his hair back. And I mean grew it. It came back his dark chocolate brown colour and was super thick…not like when he was a puppy but still, very full for someone who had no hair for over 2 years! His diabetes and Cushing's were controlled well for a very long time. I can't remember when exactly but his ACTH stim tests started trending down. I asked the vet if we should change his trilostane dose but she said no. Over time, we also had a really hard time getting him to eat. Yet he showed no other signs of anything being off. We enjoyed a great summer of sleep ins because he wasn't hungry at all. In September I was to do an ACTH stim but he was having issues with muscle tightness in his front end and his diabetes was not controlled well. Well, mostly he was dropping to a pretty low number during the day so we started changing his insulin dose. Anyway, I was busy with a new school year starting and being at a new school so all I blew off the ACTH stim and wanted them to focus on his muscles and diabetes. There was no arthritis so the cause of his pain and muscle tightness was undiagnosed. They put him on pain meds. His diabetes continued to be an issue. In October, we did the ACTH stim and what a surprise to find out he was Addison's! Pre 24 nmol/l (ref <20 to 270) and post 30 nmol/l (ref 230-570). So, we stopped trilostane immediately and started pred and Florinef. After a week, his electrolytes were good and a new vet saw him. She questioned whether or not he has myotonia. She quickly took him off prednisone and metacam. Started him on tramadol and gabapentin for pain. He remained on the florinef. By the time we did a follow up 3 weeks later, he was showing so many signs of Cushing's. Long story short, we have been fighting for our vet to consider that the Cushing's has returned. Last week, we took him to see his TCM vet in Edmonton. She feels that his symptoms were in line with her examination - he is Cushing's. She did a resting cortisol to see what was up and he had a very high number for a pup who is supposed to be Addison's - 177 (ref 28-128 nmol/l). This was taken 18 hours since his last Florinef dose. The vet seemed pretty sure that the florinef couldn't be influencing the results that much. However, we still have to deal with our vet in Saskatoon. So….ummm….I have to go so I will continue later!!!

[kaibosmom]

Ok. So, where was I? High resting cortisol in conjunction with several Cushing's signs that just keep getting worse - drinking lots, ravenous appetite, panting, skin on his belly getting thin and wrinkly, dry nose, diabetes uncontrolled, and (gasp) losing his hair quite rapidly (did I mention he just grew it back after over 2 years??!!!). Our Saskatoon vet, insists that we can't do an ACTH stim without having him in the hospital for 48 hours for continuous monitoring of electrolytes. We have pleaded our case of having him home. Bringing him in every 4 hours to be monitored. Staying up with him over night. To no avail. She offered a different idea last week, saying we could give him DOCP injection but then if he was Cushing's then he would need electrolyte monitoring for 28 days (until the DOCP is out of his body). I did oodles of research last week and supplied her with many articles. Things like ACTH testing after 24 hours of being off florinef (which has happened already….no ACTH test though) or changing him to dexamethasone and then testing, and so on. However, there is still no change in her response. Only offering an ACTH stim test while he is still on the florinef. Our other option, is to sign a waiver releasing them of responsibility of his death should we discontinue the florinef on our own without having him monitored. Needless to say, it has been frustrating.

Ooops…I forgot….November 30 - full blood work, urinalysis, and thyroid to see if there is something else going on that we are missing (I did all of this because I knew our vet here would not consider the Cushing's had returned if we did not do this). Thyroid is good. Urine is good. No evidence of kidney issues. However, lots of changes in his blood work. I will cut and paste from the vet:

Kaibo's biochemistry results showed evidence of increased liver enzymes, an increased blood glucose level and an increased cholesterol levels. His urine results showed evidence of a large amount of glucose in his urine with a small number of ketones present. These results show that his diabetes is uncontrolled. I would recommend that we continue his insulin dose at 2 IU twice daily and that we perform a blood glucose curve at your earliest convenience. I would recommend to not change his insulin dosage at this time.

Kaibo's blood results could also be suspicious that his Cushing's may have returned, however it is difficult to determine this as many of the changes we see with Cushing's disease such as increased liver enzymes, an increased cholesterol level and an increased blood glucose can also be see in dogs with dysregulated diabetes.

Well, seems to me pretty overwhelming support for Kaibo to be a Cushing's pup once again. My gut tells me so. My gut also tells me he would be fine if we took him off Florinef so that we can do the ACTH stim. We hope to get this done this week, however it happens. I am not sure if anyone else has experienced this here on the forum (Cushing's to Addison's to Cushing's) but leave it to Kaibo to add this to his repertoire.

As for the myotonia, I am not 100% sold on the idea. However, we had decided to do the testing for it - an EMG. That test is scheduled for December 13. However, that date is coming fast and I am not sure if we will go through with the test. Mostly because in addition to that test, we were going to fix his hernia (yes, one more thing!!!). I am not sure if it is best to go through with this if he does have Cushing's. Perhaps it is best to wait until his Cushing's is being treated again, in control, and it is my hope his diabetes will be controlled once he is treated for Cushing's again. Whew. So much going on. It's been hard. Very hard. Anyway, I hope to stop in again soon with more updates for you!

[Budsters Mom]

Hi Nikki (waving wildly)!!!

It is so good to hear from you. Wow, you and our wonder boy has been through a lot! I am relieved to read that though it all, Kaibo pushes on. Great job Nikki and
Paws up Kaibo boy!!!:p

Keep on trucking and please keep us posted.

Hugs,
Kathy

[Harley PoMMom]

Hi Nikki,

Gosh I am sorry to hear that Kaibo is having such a tough time right now :( And hopefully very soon he will be feeling like his ole self.

If this were me I would put my focus in getting that diabetes under some kind of control, ketones found in the urine, no matter how small of an amount, is very alarming and can be life threatening.

As for whether Percorten-V (DOCP) is a better choice than the Florinef I have no experience with that but in an article on Dr Peterson's blog, titled: "Managing Addison's Dogs with Concurrent, Uncontrolled Diabetes" he prefers Percorten-V (DOCP), and one reason he gives is that:
In addition to the fact that Addison's dogs are commonly overdosed with prednisone, it's very important to realize that fludrocortisone acetate also possesses moderate glucocorticoid activity, as well as having marked mineralocorticoid potency (2,3). By comparison, fludrocortisone has 10-times the glucocorticoid activity and 125-times the mineralocorticoid activity of cortisol, the glucocorticoid hormone secreted by the adrenal gland. In this regard, fludrocortisone is very different than Percorten-V, which possess no glucocorticoid activity (2,3).

For the dog with Addison's disease, a glucocorticoid is a glucocorticoid —it makes no difference to Scooter if this glucocorticoid activity comes from prednisone or from the Florinef. This potent glucocorticoid activity of fludrocortisone explains why some dogs will develop polydipsia and polyuria, common side effects associated with higher-dose glucocorticoid treatment in dogs (8). This is another reason why we need to get Scooter off of the Florinef and switch to the Percorten-V.

So this may be why you are seeing some of those symptoms that are associated with Cushing's but in reality it is the Florinef that is causing them.

He further states that:
Glucocorticoid-induced insulin resistance
In all likelihood, the reason for Scooter's poorly controlled diabetes is related to insulin resistance associated with glucocorticoid excess (9,10). By stopping the Florinef and providing mineralocorticoid replacement with Percorten-V instead, we will remove one source of excess glucocorticoid. Lowering his daily prednisone dose will also help.

As we remove the cause of the insulin resistance, the dose of insulin will again fall. You should monitor Scooter closely during this period to ensure that insulin overdosage and hypoglycemia do not occur, and lower the insulin dose as needed.

Here's a link to that article: http://www.animalendocrine.info/2014/02/managing-addisons-dogs-with-concurrent.html

Kaibo sure is a complicated case and I am in awe of the way you have been taking care of your sweet boy, keep us updated.

Hugs, Lori

[kaibosmom]

Hi back (also waving wildly)!!! I read that article too Lori. I find it so interesting that there is so much concern over the safety of having him in hospital for the ACTH stim test prep (take him off Florinef) but no mention of the ketones in his urine! Anyway, here is the update so far.

Kaibo had an ACTH stim test on Tuesday. I just booked him in as I was so frustrated with this whole situation. We felt safe withholding the evening dose of Florinef so he had the ACTH stim after being off of it for over 25 hours. I missed the call from the vet so had to wait until today to get the results. Let's just say they were not as expected and I am quite confused, devastated, and all sorts of other emotions. I really do think he has been through enough. Anyway, results are as follows:

ACTH Stimulation Test - Final
Interpretation:
ACTH stimulation test demonstrates some adrenocortical reserve, suggesting that hypoadrenocorticism has resolved. mj

Collected: 06-Dec-2016 Received: 06-Dec-2016 Tested: 06-Dec-2016 Completed: 06-Dec-2016
ACTH Stimulation Test
ID
Test
Result
Units
Reference
Flag
Kaibo
Cortisol, Resting
177 nmol/L (ref <20 - 270)
Kaibo
Cortisol, Single Post
223 nmol/L (ref 230 - 570)
L
Sample
Lipemia
Hemolysis
Yellow
On Cells Pre
1+
Slight
None
On Cells Post
Slight

Yet, we are told from the vet that he is still Addison's and that he must remain on Florinef (although we are welcome to change him to DOCP). Umm…it says right in the interpretation that hypoadrenocorticism is resolved. ??? I asked about various symptoms we are seeing and the changes in his liver enzymes and how she can explain those. There is never an explanation. Just Addison's and uncontrolled diabetes. Now, this is Kaibo here…inhaling his food, crying by the pantry all night, getting up earlier and earlier to eat. The only time he did this in the past was when he had Cushing's or when his blood sugar was low.

The vet was upset we took him off Florinef against medical advice so she pulled some blood while he was there (didn't charge us thankfully). I will try to cut and paste results. They are confusing to me. She stated on the phone that the potassium was high at 6.8 bordering hospitalization levels. Yet, she sent him home with my husband and did not mention this to him! Sorry but that seems unsafe for someone who was so set about safety and avoiding an Addisonian crisis. I asked about sodium levels and she said they were normal. Umm…..what? I thought they had to be low if potassium was high with Addison's. Now, I'm just new to the Addison's but still. Oh, I just requested to join the Addison's group tonight (eye roll here!). Anyway, I'm exhausted. My first graders are wild. I literally just wrote a letter from Santa regarding their behaviour to read to them tomorrow (desperate times call for desperate measures). I'm confused. Sigh. Love having you all on the case again…or just the kind words of encouragement because I'm at my wits end.

Lab results: (didn't copy and paste the best but I tried to clean it up; reference range follows his results; H or L indicating high or low).

Kaibo
On Cells Pre
Sodium
155 mmol/L 140 - 153 H

Potassium
6.8 mmol/L 3.8 - 5.6 H

Na:K Ratio
23 28 - 38 L

Chloride
102 mmol/L 105 - 120 L

Bicarbonate
21 mmol/L 15 - 25

Anion Gap
39 mmol/L 12 - 26 H

Calcium
2.90 mmol/L 1.91 - 3.03

Phosphorus
2.05 mmol/L 0.63 - 2.41

Urea
5.8 mmol/L 3.5 - 11.4

Creatinine
48 μmol/L 41 - 121

Glucose
24.1 mmol/L 3.1 - 6.3 H

Total Protein
71 g/L 55 - 71

Albumin
41 g/L 32 - 42

Globulin
30 g/L 20 - 34

A:G Ratio
1.37 1.06 - 1.82

Sample
Lipemia
Hemolysis
Yellow
On Cells Pre
1+
Slight
None
Interpretation:
Electrolyte pattern is unusual, given the history.
Hyperkalemia could be due to mineralocorticoid lack and chloride would support this;; however, hypernatremia is more difficult to explain.
Normal bicarbonate with high anion gap suggests metabolic alkalosis and metabolic acidosis. Is this patient vomiting which could result in hypochloremia and metabolic alkalosis?
Hyperglycemia suggests lack of glycemic control which could also contribute to hyperkalemia.
Other clinical/treatment information that might explain these findings?

We are scheduled for a meeting Friday afternoon.

[labblab]

Hi Nikki,

As you already know so well, Kaibo's situation is so very complicated. :o

I am not a vet, so can only make a stab at trying to make sense of things. But one thing I can attempt to clarify is that there are two aspects to Addisonian conditions: lack of glucocorticoid (insufficient production of cortisol), and/or lack of mineralocorticoid (insufficient aldosterone production). As I understand it, either or both conditions may be present, depending upon the cause for the Addisonian situation.

So even though Kaibo's cortisol level has rebounded sufficiently (to approx. 8.0 ug/dL), this does not necessarily mean that his aldosterone level has also normalized sufficiently. If that's the case, then he'd still need continued supplementation with a mineralocorticoid. And based on the article that Lori cited, it may indeed be the case that the Percoten (DOCP) would be the better choice since apparently he is not in need of any further glucocorticoid supplementation, as well.

I know the confounding questions involve the high sodium, as well as the apparently uncontrolled glucose. As you've already noted, typically you would expect to see low sodium in addition to the high potassium in an Addison's dog. But I believe the interpretation of the lab results suggests that Kaibo's elevated glucose may be skewing both of those blood chemistries. So as to whether or not Kaibo is truly still "Addisonian," I do not know. But no matter what is causing the high potassium level, it needs to be contained or else it truly can become life-threatening. So perhaps the DOCP is necessary to control the potassium level, no matter what the cause of the elevation. That part I do not know, either.

Bottom line is that in my totally nonprofessional estimation, I am doubtful that Kaibo is actually Cushinoid again. I would suspect that his diabetes and perhaps still insufficient aldosterone production are the most pressing issues right now and are accounting for his symptom rebound. But I will definitely be anxious to hear what your vet suggests when you meet tomorrow.

Marianne

[kaibosmom]

The meeting didn't go that well as far as our concerns regarding the return of Cushing's. We are told he is still Addison's (despite the clinical pathologist interpretation as hypoadrenocorticism resolved). He will remain on Florinef. We will do a blood glucose curve tomorrow (Saturday). It seems they want to focus on the diabetes (of course, we want this controlled as well but it doesn't explain the hair loss…sorry to be hung up on the hair but after almost 3 years of virtually no hair and then getting it back from April to August now losing it again…I'm concerned!). We will do the curve and work with them as best we can.

Sticking point now is that he is scheduled for an EMG to test for myotonia on Tuesday next week. Because he has a hernia, we were going to get that repaired while he is under for the EMG test. I am unsure if this is the best time to do either test or if we should do myotonia to either confirm and/or rule it out and get him started on medication if needed. The hernia is getting larger but we can still push it in. It isn't emergent at the moment, nor do we wish it to be. The vets tonight said that they think he is stable enough to undergo the surgery but the choice/comfort level has to come from us. I guess because I currently have little faith in my vet I am a bit nervous to proceed. Then part of me thinks it is going to be fine and we should just get it done. I am a wreck to be honest. I just spent the last who knows how many hours, working on my first post for the Addison's support group. Now it is time to go cuddle Kaibo.

[Squirt's Mom]

Did they do an ACTH? Do you have the result, Nikki? The ACTH is the only way to tell if he is Addison's or Cushings. ;)

I would be a nervous wreck regardless but especially if I had little or no faith in the vet. In fact, I would be seeking a second opinion asap and putting a delay on that surgery til I was comfortable with both the necessity and the one holding the knife. Know regardless, we are with you all the way, right by your side the whole time.

Many hugs,
Leslie and the gang

[kaibosmom]

Hi. The surgeon who is to do the surgery is the one who saved Kaibo's life when he had the lung surgery (pumped his heart). She did both of his FHO surgeries so we are very comfortable with her.

We did an ACTH stim last week. We took Kaibo off the florinef for over 24 hours. According to the pharmacist (and other papers I have read), the medication should have had little influence on his stim results. However, the resident and her supervisor still say he has Addison's despite the return of many Cushing's symptoms.

ACTH stim Dec 6/16
resting 177 nmol/L (ref <20-270)
post 223 nmol/L (ref 230-570)

Interpretation: ACTH stimulation test demonstrates some adrenocorticol reserves, suggesting hypoadrenocorticism has resolved.

The vet was upset we took him off florinef against her wishes. So, she pulled some blood work without us knowing. The results showed
Sodium 155 mmol/L (140 - 153) H

Potassium 6.8mmol/L 3.8 - 5.6 H

Na:K Ratio 23 28 - 38 L

Chloride 102mmol/L 105 - 120 L

Anion Gap 39 mmol/L 12 - 26 H

Glucose 24.1
Interpretation: Electrolyte pattern is unusual, given the history.
Hyperkalemia could be due to mineralocorticoid lack and chloride would support this; however, hypernatremia is more difficult to explain.
Normal bicarbonate with high anion gap suggests metabolic alkalosis and metabolic acidosis. Is this patient vomiting which could result in hypochloremia and metabolic alkalosis?
Hyperglycemia suggests lack of glycemic control which could also contribute to hyperkalemia.
Other clinical/treatment information that might explain these findings?

The vet was focused only on the high potassium and could not explain the high sodium. In Addison's dogs my understanding is Na should be low and K high.

I spent hours last night looking at lab reports. I just really think he was misdiagnosed. Last night I finally saw something I can't believe I missed. Will post below I'm scared to lose this post so far.

[kaibosmom]

Ok so looking at his results, I saw he had elevated potassium back in February. I questioned the vet about this last night and she had no explanation besides diabetes uncontrolled. Then, we asked why can't that be the case now and were told because he has Addison's.

October 5/16 ACTH stim
pre 24 nmol/L
post 30 nmol/L

** ideal cortisol concentrations for dogs being treated with trilostane 30 -150 nmol/L pre and post. **

Why didn't I see this? Question it? He was just at the bottom end. The interpretation even is this:
Results are consistent with adrenocortical hypofunction. Please see recommended guidelines below which together with patient's clinical status, may help to determine whether medication may require (downward?) adjustment.

So, although it says hypoadrenocortical function, the pathologist asks whether the trilostane needs to be decreased.

In my opinion, the vet looked at this and only his potassium 5.8 mmol/L (ref 3.8-5.6). Na was 141 (ref 140-153). His liver enzymes were all the lowest I have EVER seen them with ALK 196 u/L (9-90); GGT 9 u/l (0-8); ALT 33 u/l (19-59); GLDH 7 u/l (0-7).

You can see his liver enzymes from November in an earlier post. They have all gone up dramatically (I think) in almost 2 months time. Actually I didn't post the results. Will work on that later. Soon come.

[kaibosmom]

I just saw on another person's page that Marianne emailed Dr. Bruyette. Is that a real thing? Like if I emailed him would he look at my stuff? Or if I posted on Dr. Petersen's blog? Thoughts about this?

Oh and so far his curve is looking quite nice today. :rolleyes:

[Squirt's Mom]

Yes, Dr. Bruyette has been very good to members here about answering their questions. I never had any luck contacting Dr. Peterson myself but several have talked with Dr. B. ;)

[Harley PoMMom]

I posted questions to Dr Peterson blog which he responded to promptly. You will need to find an article in his blog that is similar to Kaibo`s situation such as one regarding Addison`s.

[kaibosmom]

I did last week (I think) and no response yet.

[Budsters Mom]

Hi Nikki,

It was a few years ago now, but yes, Dr. B. helped me out with Buddy. I received several emails very promptly, within a half hour or less. He even advised the neurosurgeon on tweaking dosages for Buddy. He was very helpful and down to earth. He always signed his email, Dave. Nothing flashy. Very nice guy. I'm not sure if he's still as actively involved with Canine Cushings at this time, but it's worth a try.

Kathy


I just saw on another person's page that Marianne emailed Dr. Bruyette. Is that a real thing?

[kaibosmom]

Thanks. I think I will try. The only response from the Addison's group so far is someone saying that he does not have Addison's and she is worried that our vet can't get that from the last ATCH stim. I honestly believe that there was an error made in October when they said he had gone to Addison's. Yes, he was at the low end of the therapeutic range for trilostane but I feel at that point, they should have decreased his trilostane and re-checked an ACTH stim in a reasonable amount of time after, especially since he was clinically doing amazing and feeling well.

[kaibosmom]

Can someone tell me how to convert my ACTH stim results to mcg/dl? Also, I couldn't seem to find how to contact Dr. Bruyette.

[labblab]

Nikki, I'm tending to agree with your concern about all this. In order to convert, you divide the nmol/L units by 27.59. So here are the October ACTH results.

Pre: 24 nmol/L or 0.88 ug/dL
Post: 30 nmol/L or 1.09 ug/dL

Here is Dr. Bruyette's email address. Do identify yourself as a member of this forum, as he may be more likely to engage in conversation with you if he knows how you came to him.

david.bruyette@vca.com

Another option (which you may have already tried?) is to ask your vet to contact Dechra directly to ask their opinion about the situation. As a pet owner, I don't think you have the option of calling them yourself up there in Canada. But there has to be a way in which your vet could contact one of their technical representatives.

Good luck!
Marianne

[kaibosmom]

Thanks Marianne. Here are my ramblings for today:

Well, we had his surgery consult today. He is scheduled for an EMG to test for myotonia (Cushing's related) and a hernia repair. Neither thing is emergent and could wait but we are not sure of the benefit of waiting vs. doing it tomorrow. Electrolytes are now normal so maybe he does have Addison's. Maybe I just need to accept the new diagnosis and that he is losing his hair again. Who knows.

K 5.4 (ref 3.8 to 5.6)
Na 142 (ref 140-153)

I guess we need to decide soon so he can have a prednisone. I'm very tired of all of this stuff. I feel like saying that means I'm giving up on Kaibo but I"m not. I'm just tired. Concerned. So many choices to make for my little man. I've made many so this should be easy but it isn't. Anyway, I know you are with me whatever we decide. There are times I think he isn't stable. Then I wonder, how much more stable. His electrolytes are good now. His curve yesterday wasn't great, but it wasn't terrible. He's been in really good spirits (although he usually is). Maybe he is the strong one right now and I am weak? I just don't know.

[Gracie123]

Wow! I just noticed you've been posting since 2012...4 years.

I can't even imagine. I've been so focused on Gracie's health for 4 months now that it's taking time away from my job, my life, sleep, and my other dog who has liver cancer/tumor.

I'm exhausted! I can't imagine how exhausted and stressed you must be... Kaibo is so fortunate to have you.

Betty

[kaibosmom]

Hi Betty,

Yes. Four years. I am exhausted. I am stressed. I am finally, after 4 years, hitting a wall. I don't know how I feel at the moment. I am just kind of empty. Tired. I feel weak. Kaibo is strong. Always has been. I need to be there for him and I am not right now. I am so frustrated with what is happening right now. In the end, we have decided no surgery. They don't even know yet. And now I feel bad about that, actually I don't. I know I should feel bad taking a surgery spot someone else could use but I don't. Tired. Through all of his ups and downs, I have never gone on stress leave. I have one more day off here and I can't imagine going back to school for the rest of the week and 3 days next week. I will. But no one is getting the best of me at the moment.

Thank you for the personal message. I am sorry I haven't responded yet. Take care.

[Gracie123]

I went down that same road with Gracie's sister. In her 14 years....she had 2 ACL surgeries, cyst removal, emergency gall bladder rupture surgery (5 days in the hospital), and liver tumor/cancer removal surgery last year. They found out the tumor was inoperable when they opened her up and told me to take her home and keep her comfortable. Multiple vets said 2weeks to 6 month survival. That was 1.5 years ago.....she's doing better than Gracie is right now.

Gracie is about to turn 14, and we (meaning I) have decided no surgeries. She's had intervertebral disc disorder which luckily has heeled 3 times from meds, confinement, and carrying her down the stairs. I think she has neuro problems now post Addisons crisis. But, I won't go through with the MRI/cat because we won't operate nor sedate her for radiation. I just think of the month Nicki had recovering from her unnecessary tumor surgery. She was so sick....lost so much weight. Everyday is a blessing having them with us....and I want them as happy and comfortable as possible.

Just my thoughts...

[kaibosmom]

Wow! You sure have been through a lot! I hope the latest bump gets resolved soon!

[kaibosmom]

Hi Gang! I hope all is well. I don't really have anything to report but I hope that will change soon. We still think Kaibo has Cushing's. The vets are still treating him for Addison's. We are working to control his diabetes better. That is the only thing we can agree on. Although my thoughts are if he was being treated for the right disease his diabetes would be controlled. Anyway, looking forward, we are going to have a meeting with the head of the University sometime soon. I am going to ask for another internal medicine specialist to review our files. Other options are to go to Edmonton, which seems ridiculous when the services I need are right here. Another option is to go to a clinic in the city. Our old IMS specialist said she would help support that person. I think the idea is to get him off Florinef and get an ACTH stim done again. I finally got answers at the Addison's group that the ACTH test is done while a dog is on Florinef usually (we withheld it so I guess that may have been my bad) when they are iatrogenic Addison's and the thought is that the dog is reverting back to Cushing's. In the meantime, he has been pretty happy. We had some kind of lethargic days where he seemed off. He cries at the pantry for food a lot which is very heartbreaking. He is losing more of his newly grown back hair. He has a huge bald spot around his bum that has crusty sores on. I'm beginning to wonder if it is CC. That area was problematic before and cleared up last and was the last spot to grow hair back in. Anyway, I'm glad to have been off with him the last two weeks. I wish the clinics were open so I could have dealt with all of this then. I really have no desire to be teaching right now. I just want to be home with him. But I have to make money to pay his bills somehow ;) Bye for now.
Nikki

[molly muffin]

I always said I worked for Molly, so totally understand. You want to be home, but have to pay the vet bills.

When do you have the meeting with the university head? Hoping they can figure this out. kaibo has always been the most puzzling of dogs and had anything and everything that could be associated with this disease. I really can't imagine that anything would surprise me at this point.

What is always so good to hear though is how Kaibo remains his joyful little self. Just a bundle of joy, no matter how his body might be reacting, his spirit is a strong one.

[kaibosmom]

Hi Sharlene. We had our meeting with the head honcho yesterday. He is having other internal medicine specialists review his file. If they support what we are being told, that he has Addison's, then he will send our file out to an external endocrinologist for review. We are ready to go to Molly's vet if needed. We do have a plan of attack for how to get him off the Addison's medication and to get an ACTH stim test done. Hopefully this horror story is coming to an end soon. It breaks my heart to see him losing hair again, crying for food, having a skin infection, etc. If this isn't Cushing's I don't know what it is.

[molly muffin]

Have you heard anything further since head honcho was going to review Kaibo's file? Does he too support the Addisons diagnosis?

[kaibosmom]

Hi everyone. The saga continues. I wish I had better news to report. We finally heard back from the review of Kaibo's files (a while ago now, I have lost track of time). The vet who reviewed everything says that he agrees Kaibo has Addison's and that he is being treated properly. We were told that we will have a new resident but then nothing came of that last week when we said we were willing to see someone else. When Brett emailed to see what was happening (we did a curve for the new vet and have no one to send it to), we were summoned back into the college for a meeting with the director and the vet who reviewed Kaibo's file. So, we go tomorrow. I am feeling rather uneasy but I also feel we should be entitled to a full explanation, although I'm not exactly sure that is what we are getting.

I am going to go in with some questions I feel really need to be answered and no one has done that so far. First of all, I will go back to the day he was diagnosed with Addison's. Primarily, my concern is why wasn't the Dechra trilostane protocol followed. It clearly states that a post ACTH stim of <40 the dog should be taken off of trilostane and rechecked. Many articles state the same thing. I guess at this point, it would be nice to at least hear, we made a mistake, we will learn from it. I am also going to ask how they can say that the ACTH stim we had in December is considered a flatline. They just keep saying it is from the Florinef, even though we had him off of it for over 24 hours. Any other questions you think I should ask? I hope someone can chime in tonight. I'm losing my mind.

We have been through so much with him for so long. I almost feel like this fight has been the worst. Yet, yesterday, on my Facebook memories, it came up that we were starting round 4 of Cushing's treatment! Ha. That was the first time, with the mitotane and what we found out later (perhaps after this fourth round failure??) was an adrenal tumour. Who would have ever thought I would be fighting to get Kaibo back on Cushing's medications! Crazy.

He certainly doesn't seem like himself these days. I really feel like he is struggling with strength, back end. It is hard to tell because of his bilateral FHOs but he's slower. Seems like it is a huge chore to get up. He's fallen a bit, but it is icy outside. His belly is full of black spots (blackheads?). He is losing hair. He is up at 4 for food. Just straight up peed on the rug last night, right in front of us (that's a new one!). Bloated belly. Just finished treatment for a skin infection. And on and on. If he has Addison's why do we see these things? Why not improvement? His diabetes seems controlled...we did a curve last weekend. Nadir was 4.6. Anyway....better post this and hope that someone can chime in tonight. Thanks. You are all the best.

oh ya, I forgot to mention, he is also losing weight. He was about 4.8kg in summer and into October. He missed one week of rehab and in two weeks went from 4.2kg to 4.0kg. He's happy getting more food but.....

[molly muffin]

I don't even begin to know what to think about Kaibo's situation. The vets seem to be convinced that he is Addisons and I guess with the surgerys he needs to have, that you need to stick with the vet hospital.

They plan to do another ACTH right, with him off the Florinef?

[kaibosmom]

Hey gang! How are you all doing? I wish I could say things are amazing here but they aren't the best. Wee man had 2 surgeries on the same day last week - one for an eye ulcer that wasn't healing and one for his hernia. Because he was doing so well under anesthetic they did the EMG to test for myotonia too. So....hernia is looking good. They rushed it along from the original date of April 12 because I asked for an ultrasound after meeting with the new vet (finally) and they found free fluid in his abdomen. They "think" the fluid was coming from the hernia where there was starting to be a problem and would have only gotten worse. The eye graft is not healing as it should be, which of course, Kaibo would have to throw something in there that wouldn't follow the rules. And, the myotonia was confirmed. So, what's next? Who knows. I certainly feel that his mobility has become compromised since October when he was taken off trilostane. I spoke to the neurologist today (she was not very happy I called her) and she said there isn't much for treatment and it doesn't always work and that if the cortisol is under control there may be some improvements. But, even if we get him back on trilostane I'm not sure we would see improvements as he was getting stiffer in the summer.

The eye sounds like we have 2 choices. Try the surgery again or remove the eye. I'm tempted to try again just to say we explored all options. However, with his diabetes, he will likely be blind at some point anyway (they are surprised he isn't yet) so maybe he would like to just be done with all the drops and the cone. He's been in the cone for 5 weeks now. Then, there's the part of trying the surgery again. Perhaps it isn't healing because he really has Cushing's and too much cortisol. I imagine that wouldn't help the healing process much. They haven't really explained why the graft is failing but suspect some sort of "toxin".

He's been really bloated before the ultrasound and since the surgery. So I'm a bit worried about what is going on there. Hopefully nothing.

As for the adrenal on the ultrasound, we were only told that it was smaller than last time. Since he only has one and it was larger than normal to begin with, I am not sure what this means exactly. If he had Addison's would it be very, very small?

To answer Sharlene's question, yes, the new vet has said he wants to do an ACTH stim. We want that ASAP. However, the new vet wants to put him on DOCP and prednisone, then wean him off the prednisone to get the ACTH stim. I feel like we have to do it as a means to an end, but I also feel uncomfortable injecting him with something he (probably?) doesn't need. We still feel like he has Cushing's but at this point, I don't care what it is. I just want him treated properly so he can feel better. Really, I just want sleep. He gets up at 4:30 to have food and pee. It is truly exhausting.

The last few months have been so hard on me emotionally and mentally. Put teaching on top of that and I'm pretty much done. I can't imagine how Kaibo feels if I am feeling so tired of it all.

At any rate, we will not give up. And, I keep getting mad at myself for not having emailed Dr. Bruyette way back when I said I would. I don't know why I haven't done it. Might go do it now. We have to find out the best way to get this ACTH stim done. We see the new vet again and if we don't do anything before the end of the month, he is "off clinics" again until June or something. 2017 has been pretty shitty so far.

I guess if the moderators want to change the title, Kaibo is 9 years old now and you an add myotonia to the list :(

[Budsters Mom]

Hi Nikki and Happy Birthday Kaibo!!

Kaibo is such a trooper. You have both been through more than any one fur baby should have to endure. I am so very sorry.:o On the upside, he's still plugging along, due to his inner drive and you on his side. You are both a true inspiration to us all. Thank you for that!

Please keep us posted when you can. Big hugs to you my dear and butt scratches for our boy.

Kathy

[Squirt's Mom]

HAPPY 9th BIRTHDAY, KAIBO!!

We hope you have many more, and healthy, years ahead!

Hey Nikki,

Sounds like things have been more than interesting for you and your precious boy recently. Sometimes it feels like it never ends, huh? But what a trooper Kaibo is and how strong his mom!

My 2 cents on the eye - take it out sooner than later to spare you both the constant drops, vet visits, surgery, etc. He will learn quickly how to manage with one eye. BUT this comes from a mom to blind babies who do wonderfully in their dark worlds. I understand the idea of removing eyes is harsh to many but when it ends pain and continual sources of stress for both baby and parent, I see it as the best option. ;)

I would also be concerned about the bloating especially after the discovery of free fluids in the abdominal cavity. Is another ultrasound in the budget? If so I would look into having that done for my own peace of mind if nothing else.

Stay in touch as you can and let us know how our sweet little guy is doing. And keep up the good work....I DO understand how tiring it can get and how frustrating to boot. You have done such a wonderful job and I know for Kaibo's sake you will continue to do so.

Hugs,
Leslie and the gang

[molly muffin]

Awww Kaibo, happy birthday sweetie. He is such a doll and so good with everything he has been through.

I keep an eye on how things are going with him on your Facebook page. Hoping for positive news on the eye front.