07/02 Shmee - Positive for acro... devastated

Discussion in 'Lantus / Levemir / Biosimilars' started by Amanda & Shmee, Jul 2, 2018.

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  1. Amanda & Shmee

    Amanda & Shmee Well-Known Member

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    Feb 18, 2018
    Previous condo

    Good morning,

    Day 4 of 6U.
    I just have to get through today and tomorrow then will be off work till next week :cat:

    I hope everyone has a nice day.
     
  2. carfurby (GA)

    carfurby (GA) Well-Known Member

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    Feb 19, 2012
    Nice start for Shmee. I hope you get a blue/green surf today.
     
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  3. Bellasmom

    Bellasmom Well-Known Member

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    Feb 12, 2018
    Nice amps!
     
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  4. Olive & Paula

    Olive & Paula Well-Known Member

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    Sep 6, 2015
    Nice start this morning.
     
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  5. Amanda and a Loudogg

    Amanda and a Loudogg Well-Known Member

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    Jun 16, 2017
    Hooray for vacation time! I'm enjoying mine so far! Shmee is definitely looking good so far this morning! Keep up the good work!! :cool::D
     
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  6. Osha

    Osha Well-Known Member

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    Apr 16, 2016
    I hope you have a fabulous vacation!

    Nice start today Shmee!
     
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  7. Amanda & Shmee

    Amanda & Shmee Well-Known Member

    Joined:
    Feb 18, 2018
    Results are in for the IGF-1 test. Shmee is positive for acro, 369. I am heartbroken and can't stop crying. I am getting absolutely nothing done at work today... so I probably will not be able to respond for a few hours. I have read over the Acro stickies and I do not see remission mentioned anywhere..... are his odds completely zero now? I feel numb. And my poor Shmee.... I think this is the worst feeling I have ever felt.

    Email from vet (I am taking her words with a grain of salt. I would love to hear from the acro experts here):
    "I have full results back from MSU, they are attached.
    The IGF-1 value is very elevated, so Shmee does have acromegaly.
    Acromegaly is caused by a (normally benign) tumor on the pituitary gland that causes the pituitary to secrete excessive growth hormone.
    From what I have researched, diabetic cats with acromegaly cannot go into remission unless the acromegaly is treated. That being said, most cats with acromegaly do not respond to insulin and Shmee is, although at a fairly high dose, so it's possible that the acromegaly is not making him insulin resistant (the endocrinologist said not all acromegaly cats are insulin resistant).
    The only real treatment for acromegaly is to have the pituitary tumor surgically removed. This procedure is not offered many places. The Royal Veterinary College in London is the hospital that perfected the surgery. From what I can find, Washington State's Veterinary School is also doing the procedure with good success.
    There is a medication, Pasireotide, that can be used to suppress the pituitary tumor's secretion of growth hormone. It is not always successful, it has side effects (mainly stomach upset) and there seems to be issues getting it in the US. It is also very expensive. I couldn't find costs for US but I found someone who said it's about $2000 GBP (which is ~$2600 US) a year. Cats on the medication don't normally go into remission, it just makes it more likely they will respond to insulin.
    So for Shmee, since he is responding to insulin, you are most likely looking at keeping him regulated vs achieving remission, although since he's responding to insulin there is a chance the acromegaly isn't affecting his sensitivity to insulin.
    Based on his BG chart I'm guessing he will need 5.5 - 6 units twice a day to maintain a good regulation."

    MSU results attached.

    @Wendy&Neko
    @LuvinThisPig - Acro is why Pig had the SRT right? I wish I lived closer to Colorado.
     

    Attached Files:

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  8. Kris & Teasel

    Kris & Teasel Well-Known Member

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    There are a couple of acro cats here who did very well on the medication, cabergoline. At least one went into remission.
     
  9. Nan & Amber (GA)

    Nan & Amber (GA) Well-Known Member

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    Mar 19, 2016
    I'm so sorry about the diagnosis. Others who have direct experience with acro will be along soon to give you helpful information, I just wanted to point you to this thread:

    http://www.felinediabetes.com/FDMB/threads/is-acro-likely-here.196928/

    In it, I was musing about the possibility of my cat being an acro kitty (no tests have been done on her), and Wendy shared some very interesting anecdotal data about the question of acro and remission. The sum-up is, we probably don't have a complete sample of acro kitties (most folks don't get the test done unless the dose gets very high) so we really can't say anything about the probability of remission, but there have been some cases.
     
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  10. Osha

    Osha Well-Known Member

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  11. Mandy & Rex (GA)

    Mandy & Rex (GA) Well-Known Member

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    Mar 22, 2017
    @Marvin's Mom - Nat (Marvin) is the one that went into remission. Do not think it's end of the world! I would look into cabergoline. From what I heard, it's more budget friendly.
     
  12. Amanda and a Loudogg

    Amanda and a Loudogg Well-Known Member

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    Oh Amanda. I am so sorry about Shmee's diagnosis. :bighug::bighug::bighug:
     
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  13. Sienne and Gabby (GA)

    Sienne and Gabby (GA) Senior Member Moderator

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    Dec 28, 2009
    The up side is you know what you're dealing with. FWIW, Shmee hasn't a clue there's anything different. He feels the same and he still loves you (and you him) just as much.

    There are acro kitties who have gone into remission and that was before Cabergoline. Perry's Sootie went into remission and at one point, Sootie was on some godawful amount of insulin -- more than I'd seen in any other cat. And there have been others. There are a lot of us who do/did not have acro kitties who's cats never went into remission. Gabby never did. Good regulation was what I did my best to achieve since after 2 years, the chances for her to go into remission were pretty slim. It had an effect on how I structured my time and social life but I wouldn't have traded that for a minute.

    Your vet needs to get better educated. The pituitary surgery is not done all that much in the US. It's a tricky surgery. The more common approach is SRT (sterotactic radiation treatment). Pig just went through this procedure. Check in with @LuvinThisPig.

    I'm sure our resident "expert", Wendy, will be by. In the meantime, take a few deep breaths. The acro part of your learning is new. Managing the insulin is not. You can do this! And we'll all help.

     
  14. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    First, for you Amanda - :bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug: And please pass on some smooches to Shmee from me. :kiss:

    Shmee is the same sweet cat he was before the diagnosis. He doesn't know he has acromegaly. Keep loving on him as before. Nothing is different that way. One in four diabetic cats (I've seen up to 1 in 3) has acromegaly. So now you have an explanation as to why his dose is higher. Floyd is also around the same dose, or at least he was before he started on cabergoline, now he's on half that dose. @Chubba (GA) Gizmo also went into remission on cabergoline, but he had a complicating cancer, so not sure exactly what happened there. Jadi's Tiffany recently went OTJ on cabergoline.

    OK, time to address what your vet said. As Nan said, some acros have gone into remission without treatment, though it's fairly rare in our knowledge base because we don't know what happens as most low dose acros don't get tested. The original RVC study that found 28% or so diabetic cats have acromegaly, found acros with a dose ranging as low as 1 unit. Yup, you read that right, 1.0 units. The average dose was 7.0 units. Shmee is not on a high dose, he is on an average dose for an acro, maybe a little low. We've had cats here on almost 100 units. That was Perry's Sootie - he had Cyberknife/SRT and went OTJ. Of active cats here, Pig got up to 59 units of Levemir, plus of R, now is under 20. Phoebe got up to low 20's and is now hanging out on 1.0 units, with no treatment but insulin and love. In some respects, Shmee is showing good response to the insulin, he's spending most of his time below renal threshold, which is a good goal for you, and testament to the great job you've done so far.

    The acromegaly is making him insulin resistant. That's what the excess growth hormone does. All acros (if they need it) respond to insulin, they just need the right type of insulin and the right dose for them at the time. But not all acros need insulin. Not hard to believe if some are only on 1.0 units. The acro tumour can pulse up and pulse down. 3 years after her initial SRT, Neko's tumour came back. Her "good" dose ranged from 8.75 units down to 0.5 units, back up to 7.0 units when the tumour came back, and back down to 0.25 units. I have seen similar variations in dose in cats that do not have treatment. That is why testing is key. The most common cause of death of acros is a hypo.

    Now onto treatments. Your vet is right in that surgical removal of the pituitary is the gold standard. It's also a tricky surgery with complications and the success of the surgery depends on the experience of the vet doing the surgery. I chose not to do it when Neko's tumour came back. Too risky for me. Royal Veterinary College would be fine to go to, they have a good track record, but a little far. Washington State University, not so much of a successful track record. I have only heard of two cats there, both had complications. Did I mention the surgery costs around $10,000 and requires usually a two week stay in hospital?:stop:

    More reasonably priced treatments are SRT and cabergoline, the latter possibly with octreotide. Pasireotide (Signifor) that your vet mentions is more like $2000 a month. :eek: There are several places that do SRT, most of them are now priced a lot higher than when I went. Sarah took her Pig to Washington State University for around $2000, much more reasonably priced. Though there would be travel involved. Cabergoline is a drug that many are trying here. We've seen three cats go OTJ and most go on lower doses. It's a new drug treatment for acromegaly, it was designed to abort pregnacies in cats, so only a one time use. There is no long term data on it's use in cats. That's the one unknown potential risk. MJW did correspond with RVC who said they have had some success adding octreotide to cabergoline for those cats who did not see impact with cabergoline alone.

    I'm going to stop there. You are probably feeling overwhelmed. :bighug::bighug: Please keep asking questions, we're here for you.
     
  15. Gill & George

    Gill & George Well-Known Member

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    Oct 27, 2015
    :bighug::bighug::bighug::bighug::bighug:
    I'm sorry Amanda, no advice but plenty of hugs for you and scritches for Schmee
     
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  16. Pamela & Amethyst

    Pamela & Amethyst Well-Known Member

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    Dec 11, 2016
    :bighug::bighug::bighug::bighug::bighug: Amethyst is on Cabergoline and has decreased her insulin need!!:cat:
     
  17. Bellasmom

    Bellasmom Well-Known Member

    Joined:
    Feb 12, 2018
    I am sorry Amanda, I can’t give advise either but I can sending healing vines and lots of:bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug:
     
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  18. Chubba (GA)

    Chubba (GA) Well-Known Member

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    Apr 30, 2017
    I’m sorry about the acro diagnosis. :bighug:It stinks, but take a moment to breath and then plan your course of action. It took us a very long time to find a vet to test Gizmo for acro, so by the time I got the results I had already pretty much accepted he had acro, but it was still difficult to have it confirmed. I knew heading into the diagnosis that cabergoline was our only option. Gizmo was around 13 pounds when we started the cabergoline. It cost us $89 a month. Because of the cancer, we will never know for sure if Gizmo went into remission because of the cabergoline or the cancer, but I definitely believe the cabergoline helped him. Sending prayers to help you decide on the best course of action for Shmee. :bighug:
     
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  19. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    I also responded on the Acro subforum. It is a well known fact - ALL Acro cats are sweeter. So now you know why Shmee is sweeter than other normal kittehs.:bighug:

    Acro is not an immediate death sentence. But it creates more treatment challenges. Some people just treat with larger doses of insulin. Wendy listed the other treatments. Many kittehs live quite awhile with proper treatment. And not all Acro cats exhibit Acro symptoms for awhile. So luck is part of the equation.

    About hypophysectomy (pituitary removal). Well, as listed above many vets don't know much about Acromegaly. It is not commonly diagnosed. That is not the only treatment.

    You have Shmee pretty well regulated at the current 6.0-7.0 dosage range. With luck, Schmee will just stay in that range. That regulation is commendable. Schmee probably feels a lot better because of all the effort you have put in.
     
    Last edited: Jul 2, 2018
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  20. Jill & Jade

    Jill & Jade Well-Known Member

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    May 29, 2018
    Adding to the all the love and positive energy being sent your and Shmee's way....:bighug::bighug::bighug::bighug:
     
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  21. Amanda & Shmee

    Amanda & Shmee Well-Known Member

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    Feb 18, 2018
    Thank you all so much. I am so grateful I have this group to come to. I am still trying to process and come to terms with everything... I am grateful Shmee has been doing so well lately, and am highly considering the Cabergoline. Since he is doing well with insulin at this point I don't think SRT is necessary yet? But I did find that there is an option in Yonkers NY about a 1.5 hour plane ride away from me if need be.. although I cannot imagine bringing him on an airplane but at least I know the option is there.
    I think this is what scared me the most. I am kind of confused. Does that mean he can unexpectedly drop very low? I have actually been wondering lately how much I really need to be getting up in the middle of the night.... when I see he is steady around 85 for a few hours, I wonder if I need to get up again in a few hours to test him, or since he is steady I am good until morning. But now this complicated things. If he has the possibility of dropping low suddenly, do I need to be getting up on the dot every few hours? On top of my worry for Shmee, I have a $300 birth control device that is supposed to take my temperature after four hours of sleeping... and I hardly get that anymore as it is.
     
  22. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    The tumour does not pulse up and down that fast. Neko's changes in dose were over a period of almost five years. Faster changes can happen as a result of treatments, though Phoebe has come down quite a bit this year on her own. It still isn't day to day changes, but maybe you'll see two or three reductions a week at the fastest. It just means you get conservative on dosing and err on the side of caution if it looks like a downward trend is happening. We can help you should that happen. And you can still see periods, as long as months of no change at all in dose.

    As for treatments, if you chose to do so, sooner is better. Some of the side effects of excess growth hormone are not reversible so the sooner you stop it, the better longer term for Shmee's health. If you choose SRT, sooner is better. The radiation neuters the tumour cells, so they still live out their life producing growth hormone. Effects of SRT can take months to show, or not. Neko started her reductions on the road trip home. :rolleyes: Most inconvenient of her.
     
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  23. LuvinThisPig

    LuvinThisPig Well-Known Member

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    Dec 8, 2017
    Amanda, first off, I want to say that I am sorry... And here :bighug::bighug::bighug::bighug: these always help!

    Secondly, I know how you are feeling. I remember when I first got Pig's diagnosis. I cried almost all night and just laid in the floor with him for hours because I thought that the Acro dx was pretty much the end of the story. Everything I had heard was so very doom and gloom with little prospect of hope. Yet, as time went on and I did a massive amount of research I learned one very key thing. Most of the research on Acros is very, very new. I believe in 2007 there were only 50 or so reported cases. This means that there were not a whole lot of treatments available to report on in those studies, but currently? Well, I can personally attest to the fact that I know of at least 3 kitties outside of this board who have gone OTJ with SRT. So, no. Remission is possible. His prognosis is not 0. He has you and the love that you give him and I will tell you this, that in the fight against Acro, that is your biggest weapon. :bighug::bighug::bighug: You got this! And we can all help! You are very blessed to be a member of this board before Shmee's dx. Now you have some of the most valuable resources at your beck and call. It is going to be okay!

    Listen to @Wendy&Neko .. I cannot tell you how many times she has saved my butt and served as my voice of reason in this. She absolutely knows her stuff and at times you will find yourself wondering if she does not have a crystal ball of all things cat! :p

    As far as treatment goes, there are options. I recently took Pig to WSU for SRT and their procedure is quite different than some of the more costly clinics. I researched them. I know of 1 kitty in the past two years that have gone OTJ with their protocol and I know of 2 more that have gone since Pig. They are very knowledgeable and Dr. Fidel is amazing! Now, the best part? I only paid about 3 dollars shy of $2,000 and I had a whole ton of extras done including an echo and ultra sound. With travel (half-way across country) and every supply imaginable, I paid about $6,500 in total, $1,500 shy of what CSU initially quotes for the procedure alone.

    Here is what I posted on another thread, but it pretty much sums up the Washington State U experience very well:

    I did want to chime in as it seems that cost will be a factor for you, just as it was for Pig and I. I recently drove Pig across country from Oklahoma to Washington to seek SRT treatment at WSU. Even with the travel costs, my overall cost came in far lower than the treatment protocol at CSU. Now, you will need to keep in mind that the SRT protocol at WSU is very different than most.

    While WSU is far cheaper than most protocols, there is a certain bit of risk in it as well. Not a risk to the cat, of course, but a bit of a gamble. The difference is that where CSU uses moving MRI technology to adapt the SRT beam to the shape of the kitties pituitary tumor, WSU works in the opposite way. They do use a moving SRT beam, but rather than conforming the beam to the tumor, they look for tumors that conform to their beam. Basically, they use a circular, rotating beam to wrap the tumor. While this sounds like a pretty big gamble, because what if you travel there and the tumor does not fit the beam? Well, most of these pituitary tumors are more round than anything. At least, in WSU's research. In fact, per Dr. Fidel, there are very few kitties that have proven to not be good candidates. I believe they see more dogs with tumors not conforming to the beam than they do cats. Pig's tumor was even slightly square, but still round enough to make him the perfect candidate.

    Furthermore, where places such as CSU do lowered doses of radiation of the course of 3 days, WSU uses a larger dose of radiation over the course of just one day. Not specifically speaking of any particular treatment facility, the basic premise here is that many places do something like 8,000gm x 3 to equal 24,000gm total. However, in the biologic world, 8,000 x 3 is not necessarily equal to 24,000 x 1, with the 24,000 x 1 being the far stronger. In fact, per Dr. Fidel, this is what most oncologists strive for in the human world. Given that the brain can handle 15,000gm of radiation in a single setting, this is the measurement of therapy that WSU has chosen to use. They have found that a singular sitting of a stronger dose is sometimes more effective in cats, especially, than the more fractionated regimes. If you have any questions regarding the protocol specifically, here is the link to Pig's Dr. explaining precisely how they do it at WSU.

    While there is no one on the board, currently, that has treated at WSU other than Pig, I am in contact with 3 other people who have sought treatment there. One about 2 years ago, one about 3 months before Pig, and one precisely a month after Pig. Actually, the one who sought treatment after Pig and I is on the board, but I cannot be sure of her screen name. I followed the lead of the wonderful lady who went there about 2 years ago and while individual results do not necessarily speak to personal success, her kitty is now OTJ and went so only 1.5 years after treatment.

    Currently, we have nearly halved Pig's dose of 59uL in only a month following treatment. We have stalled a bit on 26uL and I am working out some diet kinks, but the reduction is undeniable. Granted, results and reduction times will vary and they do come in spits and starts, to half his dose not even 2 months following treatment is a major win!! We still have about a month to go before we are even suppose to see results!

    I sincerely hope this helps.

    Oh! Costs... I am working on putting together a summary of procedures and prices for his forum in the high dose thread. But, for the moment... I had them run several other tests over the bare minimum for treatment and even with the additional tests, we walked from WSU paying right at 2,000$. Travel cost me a little more than that and supplies ran about $1500. Total cost for a cross country drive and treatment for Pig (plus numerous ancillary tests) came in about 6,500$. Just shy of the treatment cost @ CSU, I believe...


    Currently, though? Pig has dropped from 59uL to just 18uL in less than 2 months, with the bulk of results expected after the 2 month mark. I suspect he will earn another reduction very soon. He is going through a bout of UTI / Bladder infection and constipation that are causing his numbers to be a bit higher, I am convinced. I cannot speak any more highly of WSU and Dr. Fidel.

    Please.. Let me know if I can do anyting to help! Even if it is just to listen! I understand how awful this all feels at first, but this board saved my Pig. There is hope! Never doubt that! :bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug:
     
  24. Sonia & Leo

    Sonia & Leo Well-Known Member

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    May 24, 2018
    Amanda, I'm so sorry about Shmee's diagnosis. :bighug::bighug::bighug:
     
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  25. saltycat

    saltycat Well-Known Member

    Joined:
    Apr 18, 2016
    I am sorry to hear about Shmee's DX. I know how you feel, I was so overwhelmed at first too. I was just getting the hang of dealing with FD and then got the same curveball. Sienna, Wendy and Luvinthispig all gave excellent advice. There are many of us who have dealt with Acro so do not hesitate to ask questions, there are many options out there and we are all here even if you just need to vent or a shoulder to support you.

    Thinking of you and Shmee.
     
  26. Tracey&Jones (GA)

    Tracey&Jones (GA) Well-Known Member

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    Dec 12, 2016
    I am sorry about Shmee's DX but he is still your lovable kitty and will always be. :bighug::bighug::bighug:
     
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  27. Sue and Luci

    Sue and Luci Well-Known Member

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    Nov 3, 2017
    So sorry to hear about Shmee's acro diagnosis. I did the very same thing the day I was told that Luci was diabetic with such a 'high' blood glucose count (374) that the vet recommended she be put down!!!! OMG I was inconsolable...after I got some sense back and stopped crying long enough to read my computer screen I started researching everything I could about diabetes / feline diabetes! And found this wonderful group of humanitarians who generally told me not to listen to my vet...for starters.

    So please, try to focus on what the experts here are saying. You've been loving and taking care of your precious baby Shmee - the testament is your SS - I think it's great looking considering acro...so keep going - do your research and love your kitty. Sending hugs and warm paw pats to you across the ether...:bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug:
     
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  28. Squalliesmom

    Squalliesmom Well-Known Member

    Joined:
    Jun 26, 2015
    So sorry to hear about Shmee's acro dx. But now you know what you're up against, and it's not a death sentence! You can do this! And you'll have lots of help and advice from others here who have hands-on acro experience. Sending prayers and vines for you and Shmee. :bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug::bighug:
     
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