Jesse just diagnosed with Cushings

[Patricia ann Wh]

Wow, am I happy to get on board with all of you. You have no idea how I felt when I couldn't find the Cushings forum.
To get to my story, my border collie, Jesse, had ALL the symptoms - 2 vets missed it, and I finally went to a specialists, he was 99 % sure Jesse was a cush dog but said that I should do nothing, that the drugs would kill him for sure. I came home and found the cush forum and then I was in doubt after reading for days and days. But --- he is the specialist !!??
Well, my dog has gone down hill so much in that time I knew it was time to do something for my beautiful guy.
Jesse is 15 - pancreatitis (I feed small tiny meals throughout the day - lots of enzymes and a chinese remedy for gallbladder/pancreatitis. Other than that, hes beautiful. Well - he was till 1 month ago when the hindend weakness started to set in. He's 88 lbs (10 of that is his belly, he may not be a purebred - he's a pound puppy) His blood work was good.
I see I should post the dex test (8 hour) I'm not really sure what to copy
pre dex 7.6
post 4 hour 8.4
post 8 hour 8.8
I actually had a vet in the town over do the test - but after listening to her - she has treated one dog and had alot of problems getting the dose right she hadn't thought of using compounding pharmacies and said she usually doesn't treat cushings dog - just lets them live it out - after reading the cush forum - I decided to find another vet - this all happened yesterday.
So now someone I saw 5 months ago that has never treated a cush dog is going to help us. (NO vet in my area has treated with trilostane or many cush dogs for that matter - I called everyone.)
Yesterday - I called the trilostane co and told them about the stories I've read here and asked "what's up with the inconsistant dosages" he said "yes - we may be making changes" - WHEN?????
I was pretty upset and he gave me the name of a vet in New York - Mark Peterson - I called him and asked if he would work with a vet if I find one.
He said he would - and the vet near me siad he would work with him too.
So I'm waiting for a call from the vet near me - as we speak.
Has anyone read or heard about retinoic acid www.antechdiagnostics.com
Oh - I'm so nervous and scared for my boy. He's my whole life.
I want to thank "KIM" if it wasn't for her I would have never been able to figure how to get on this site. Thank you so so so much Kim.
Patti and Jesse

[Squirt's Mom]

Re: Jesse just diagnosed with Cushings

Hi Patti!

I am so glad to see that you and Jesse made it here! Kim is an angel, huh? And so is Natalie for giving us this spot.

First, some questions....whoopie! Is the test you posted the low dose dex? Is this the only test Jesse has had? (If so, you do not want to start treatment just yet!) Does Jesse have any other health issues beside the Pancreatitis? Is he on any other meds, supplements or herbs at the moment and if so what for? What diet/feed is he on? What signs does Jesse exhibit? What prompted you have him tested in the first place?

Cushing's is a difficult condition to diagnose and it takes a series of tests to get a definitive diagnosis. The tests that are used are the LDDS (low dose dex), HDDS (high dose dex), and ultrasound. We also strongly suggest the full adrenal panel from the Uni of Tn in Knoxville (UTK) especially if one is planning to use Trilostane. Trilostane always elevates one or more of the intermediate or sex hormones. Pups can have these other hormones elevated, which is a condition called Atypical Cushing's, and the Trilo will probably make things worse instead of better as it will increase instead of decrease these hormones. Atypical presents with the same signs as conventional Cushing's but is treated differently.

As for being scared of the meds. I understand that as they are powerful drugs. But it isn't the drug that needs to be feared; it is inexperienced vets, or those who don't follow the established protocols for diagnosing the disease, and/or administering and monitoring the meds. When you hear of something going wrong with treatment the cause can usually be traced back to the vet or the lack of diligence on the parents part, which is usually because they weren't told what to look for by their vet. If handled correctly, the treatments are no more dangerous than aspirin, which can be deadly, too, if misused.

One thing you need to understand is that Trilo is no safer or less toxic than Lysodren even tho many vets and parents seem to think so. Trilo has not been around as long as Lyso and therefore does not have the track record that Lyso does and fewer vets are familiar with it. As Trilo is used more and more, I feel you will hear more and more horror stories about it. Trilostane had its own peculiarities, too. Both drugs are life savers in the hands of an experienced vet and diligent parent, but do not be mislead into thinking Trilo can't cause the same issues that Lyso can.

I understand fully how distressed you are over this whole thing with Jesse. I was a total basket case when my Squirt was diagnosed! For weeks on end all I could do was cry, then for months I cried off and on as I tried to understand what was happening to my Sweet Bebe. But my head was so frazzled I couldn't understand a thing that was being said or that I read. It was all GREEK and scared the crap out of me! Then I finally found cc.net and these wonderful folks took me in and gently led me along until I started to understand a tiny bit. They have continued to lead me, teach me, and hold my hand to this very day, 13 mos. later. The pros here (which I ain't! ) are simply amazing and are more than happy to share their experiences, knowledge and support with any who ask. We are here to learn, share and care together, and I am glad you and Jesse have joined our little family.

The most important thing you can do for Jesse is to educate yourself on Cushing's. You are his first and last defense, his only voice, his advocate, and the more you know, the stronger you will be in these roles. There will be a list of links at the end of this post to get you started. Please ask any questions you have and we will do our best to help you understand. There is no such thing as a "dumb" question! That is how we learn.

Again, I am so happy you found us and I really look forward to learning more about you and Jesse in the future.

Hang in there!
Hugs,
Leslie and the girls

the links

General Cushing's info:

Kate Connick*
http://www.kateconnick.com/library/cushingsdisease.html

Long Beach Animal Hospital*
http://www.lbah.com/canine/cushings.htm

Drs. Foster and Smith*
http://www.peteducation.com/article....2+2097&aid=416

Newman Veterinary*
http://www.newmanveterinary.com/CushingDiag.html

Cushing’s signs and pics*
http://www.newmanveterinary.com/CushSignFrame.html

BMD Health Library*
http://www.bestbeau.ca/bmd_health_links_4.htm
(scroll down to see Endocrine Diseases)

Mar Vista Animal Medical Center*
http://www.marvistavet.com/html/cushing_s_disease.html

Vetstream*
http://www.vetstreamcanis.com/ACI/Fe...ctSheet052.asp

Atypical Cushing’s*
http://veterinarynews.dvm360.com/dvm...date=&pageID=1

http://www.vetcontact.com/en/art.php?a=132&t=

UT Panel
http://www.vet.utk.edu/diagnostic/en.../treatment.php

[labblab]

Re: Jesse just diagnosed with Cushings

Hi Patti!

I only have a moment to post, but I wanted to welcome you, as well.

And also to tell you that if "YOUR" Mark Peterson is "THIS" Mark E. Peterson, DVM -- you should be in great hands!!

Diagnosis of Hyperadrenocorticism in Dogs (I'll try to locate and post the entire article later on...)

Best wishes to you and Jesse, and I'm so glad you've found us.

Marianne

[Buffaloe]

Re: Jesse just diagnosed with Cushings

Hi Patti,

Welcome and I am glad you found us. If your Mark Peterson is the same one I am familiar with then I think you will be in very good hands.

I just wanted to point out that the results of your low dose dex. test indicate the possibility that Jesse could have an adrenal tumor. There was no suppression after the injection of dexamesthasone, the second and third numbers are higher than the first. This test cannot diagnose an adrenal tumor but it can indicate the definitel possibility. By far, the best way to determine if Jesse has an adrenal tumor is a high quality ultrasound. I think this is something you should address with your professionals.

All the best to you and Jesse.

Ken

[frijole]

Re: Jesse just diagnosed with Cushings

Patti! It is Kim!

I have a 15 min break for lunch but I am so relieved you got the posting thing down. Way to go! We all started somewhere. Couple thoughts -

First off - I hope that vet that Marianne linked you to is the same as the new one you found. You'd be in super hands it would appear.

Second off - what are the symptoms that scare you the most right now? Is it the hind leg weakness? My dog had it too and with treatment it slowly went away. Is there anything else?

Cushings is often not diagnosed because it mimics old age and vets don't notice all the signs we do. I think my poor girl had it for many years before we accidentally discovered it. So don't be worried that you have to medicate TODAY. It is important to make sure that:

1. the diagnosis is right
2. you understand the disease and the medication

First step is coming on here and posting what you did. Be sure to read the links and ask lots of questions. There are no stupid ones. We have been there.

I have never heard of that testing company you linked. Why do you ask?

Thanks for taking the time to find us.
Kim

[frijole]

Re: Jesse just diagnosed with Cushings

Hi Patti,

Welcome and I am glad you found us. If your Mark Peterson is the same one I am familiar with then I think you will be in very good hands.

I just wanted to point out that the results of your low dose dex. test indicate the possibility that Jesse could have an adrenal tumor. There was no suppression after the injection of dexamesthasone, the second and third numbers are higher than the first. This test cannot diagnose an adrenal tumor but it can indicate the definitel possibility. By far, the best way to determine if Jesse has an adrenal tumor is a high quality ultrasound. I think this is something you should address with your professionals.

All the best to you and Jesse.

Ken

Thanks for looking at that Ken. I am at work and don't have the chart to look at. I was hoping someone would help her. Glad you found the site too!

Kim

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi Kim, Yes the hind leg weakness is scaring me the most.
He drinks a gallon in 24 hours, yet he will still holds it for ever it seems.
And his belly is swollen and I feel so bad because I can't feed him too much, I don't want him to put weight on. I make his meals, so now its chicken, fish, veggies,fiber, enzymes, and a host of supplements, (I've had a few holistic vets that taught me well in the food and supplement dept.) one was a former partner of Dr. Martin Goldstein.
Jesse did have an ultra sound and it looked good. I'm still waiting for the vet to call me, he is supposed to send the reports to Dr. Peterson to be reviewed by him. I'm sitting on pins and needles waiting and can't stop crying. I can't believe the complications involved with this disease. Yes, Jesse may have had it for a while. From reading a post response it sounds like the trilostane is just as scary as the lysodern. Boy, now I'm really scared !!!. The link is a diagnostic lab with trilo info and also a very expensive drug by Roche - retinoic acid, the write up sounds excellent. My vet said there hasn't been much testing - but it seems from what I've read that they are using it on infants. The more reading the more overwhelmed and scared I'm getting. I'm hoping to get some positive feedback too. I feel so helpless - I need to do the best for Jesse because he counts on me for everything, as he should.
Thank you Kim - you made me feel better

[Squirt's Mom]

Re: Jesse just diagnosed with Cushings

Hi Patti,

Our intent is NOT to make you more scared but to make you aware.

Knowledge is power they say, and that is never more true than when dealing with Cushing's. I really, truly wish we could say, "Oh, don't worry, this is nothing to concern yourself about. Whatever you do will be just fine. Any ole' vet can handle Cushing's and any med will work like a charm on your Jesse", but that would not be fair to you or to Jesse. Cushing's is complicated and requires a good, Cushing's savvy vet and an educated parent. BUT that doesn't mean there is no hope. We have had many, many pups get diagnosed and be treated with no troubles whatsoever and go on to live many more years on treatment, happy as can be. When I say many more years, I mean just that...many more. We had one member who's pup lived 12 years after diagnosis and treatment and another who's pup lived for 8 more. These are only two of the examples from our group and there is no telling how many more are out there we have never met who have had the same experience.

What is important is that you can make informed decisions about Jesse and his care. That is one of our purposes here, to inform you about what we have learned to help you avoid some of the mistakes we have made.

It looks as if the Dr. Peterson you and your vet will be working with is THE Dr. Mark Peterson. You will be in some of the very best hands in the canine Cushing's world with him and I hope that in itself will help you have less fear. You and your vet will learn a great deal from him and be able to help others as a result. In fact, you will be teaching us things before long, I have no doubt!

We all understand how scary this is right now and I want you to know that you can talk to us about your fears any time, not just things pertaining to tests, treatments, etc. While we do our best to provide accurate information, there is just as much to be offered from the human level. That doesn't require anything but caring about each other, and we do care about you and Jesse. Once you introduce yourselves to us, you are family and like family, we may not always agree, but we always care.

Hugs,
Leslie and the girls

[Squirt's Mom]

Re: Jesse just diagnosed with Cushings

Retinoic Acid as a Novel Medical Therapy for Cushing’s Disease in Dogs
http://endo.endojournals.org/cgi/con...ull/147/9/4438

[Wylie's Mom]

Re: Jesse just diagnosed with Cushings

Hi Patti & Welcome,

I'm sorry I don't have time to read & write...gotta finish my taxes! I'm just glad you found us (we were waiting for you)!

-Susy

[Lulusmom]

Re: Jesse just diagnosed with Cushings

Hi Patti,

Have you had any luck in getting copies of Jesse's test results so you can post them here?

I hope that you are coping much better at the moment. I know that when my second dog was diagnosed, finding cc.net saved me from being carted away by the little men in white coats. While I can't vouch for anybody else, I think I've got both oars in the water now. I meant it when I told you that cushing's is usually a lot tougher on us parents than our sweet pups. They just sit there and go dodeedodeedo, where's the food, where's the water?

Hope to hear from you soon.

Glynda

[frijole]

Re: Jesse just diagnosed with Cushings

Patti,

Greetings from me as well. Looking forward to hearing how you and Jesse are doing.

Kim

[Rusty's Mom]

Re: Jesse just diagnosed with Cushings

Patti,

Wow, home-cooked meals and all - Jesse is so lucky to have you as a mom!

Please hang in there. I know it's frustrating when you want to be proactive and you don't have the medical support behind you. It sounds as though you're on the right track now.

I just wanted you to know you're in my thoughts and prayers!

MJ

[barney's mom]

Re: Jesse just diagnosed with Cushings

A cushing's diagnosis for your pet is very scary and overwhelming. Finding good veterinary care can seem almost impossible. I have been right where you are with my dog. I was so afraid to give him lysodren, I was afraid I would miss the signs and symptoms that loading was complete and that I would harm him. I tried Trilo for a brief period, but that wasn't the drug for my boy due to pre-existing renal problems.

With the members of this board for guidance and a competent vet, you'll be just fine. Someone once told me that we have never lost a dog during loading here at cc.net. That made me feel 100% better. Use this board to bounce ideas off other members, and if something doesn't sound quite right, you'll know it.

My 12 year old border collie had really bad hind leg weakness until treatment. It didn't do completely away but it is so much better. It was so bad at one point that we bought him shoes so he would get better traction.

I attributed many of the signs and symptoms of cushings to old age. It was nice to see my boy get his spunk back

Good luck to you and I look forward to hearing more.

Cheryl

[Squirt's Mom]

Re: Jesse just diagnosed with Cushings

Hi Patti,

How are you and Jesse doing? Hope all is going good! Would love to hear from you!

Hugs,
Leslie and the girls