Stumped on Diagnosis - EPI or Something Else?

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Coonley
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Stumped on Diagnosis - EPI or Something Else?

Post by Coonley » 04 Nov 2018, 12:53

Hello everyone! I am quite new here, though I'm not sure if I belong here or not. I have a German Shepherd that has just turned two years old, named Kirk. I will try to make his past history as short as possible and list only the key points in the progression of his illness. Here is the back story :

Ever since I had gotten Kirk, he's had very bad gastrointestinal issues. When he was a baby, it started out as constant watery diarrhea with occasional vomiting, along with steady weight loss. We had started out with a stool sample, which had came back positive for Giardia (Also showed tiny bits of undigested food, but the Veterinarian didn't think anything of it.). Between countless rounds of Metronidazole and Panacur, over the course of three months, neither, even when paired together, could fight off Kirk's Giardia.

We later discovered that his B12 was EXTREMELY, off the charts low - So in pair with his treatment, we also began weekly B12 injections. (We also tested for EPI and a few other tests at the time, but everything had came back negative.) The B12 injections seemed to help, but Kirk was still not nearly close to 100%.

We noticed that Kirks personality was starting to change, he became very stand offish with other people, and would hide behind me rather than engage with them like he normally would, though the Veterinarian didn't think anything of this.

About a month after the continued B12 injections, as well as continued Giardia treatment, Kirks B12 finally was in range. (To be exact, almost in the mid range, but not quite there yet.) The Veterinarian figured we could cut down the B12 to every two weeks. It was after this cut, that Kirk had his first seizure. (September 18th of last year. He was not even a year old yet.)

It started out with disorientation and fly biting, which eventually progressed into a grand mal seizure. I called the emergency hospital, who informed me that I should not bring him in unless he has another seizure. Soon enough, Kirk had a second grand mal, and it was off to the hospital. When I came in, they situated Kirk and I in and room, a nurse soon came by and told me that it was protocol that they take Kirk in the back immediately. Kirk did not want to be parted from my side (They wouldn't let me walk with him to the back.) and so they dragged him forcefully away from me. I think the stress from this put him into a tailspin, he had six more seizures, one after another - He was in Status Epilepticus.

When they finally were able to stabilize him, he had become completely blind. (It took about a week, but he eventually got his vision back.) They also believed that he had aspirated, so in addition to seizure medication, they also loaded him up on antibiotics.

Fast forward after a rough four days, Kirk was finally discharged from the hospital. (I really thought I was going to have to make the decision to let him go. He truly proved to me that he had a very strong will to live, so I was not going to give up on him.) Still blind, and in addition to the blindness, he could not stand, walk, or go to the bathroom by himself at all. He also had no idea whom I, or any of his family were. It took a very long time to rehabilitate him, but after a lot of hard work and effort, Kirk was able to pull through.

We started seeing a Neurologist for Kirk's issues. The Neurologist we saw didn't want to run any tests, nothing, and told me Kirk probably just had Idiopathic Epilepsy. (A note, Kirks personality had morphed once again, and he had became very aggressive during this time. Kirks Gastrointestinal symptoms were still present in addition to now having seizures. He also began throwing up huge hair balls.)

My gut told me that I didn't think it was Idiopathic Epilepsy, I believed that his seizures were connected to his Gastrointestinal problems. We also switched to a new Veterinarian at the time, whom decided, unlike the Neurologist, that she would make it her mission to think of any possible tests we could get done to rule out as much as possible - As well as send us in the right direction to a better specialists. (I also began noticing some specific triggers for Kirk's seizures - If he ate anything of a tough consistency, like a Bully Stick, a Biscuit, etc, he would have a seizure. In addition to this, Kirk could only tolerate a certain threshold of exercise, otherwise he would immediately fall into a seizure. )

(All tests came back normal, except it was shown that in addition to Giardia, Kirk had E Cuniculi A and B. Somehow with the treatment for E Cuniculi, the Giardia eventually disappeared.)

The new specialists was double boarded as both a Neurologist and Internists, which our Veterinarian figured was our best bet. However, getting an appointment with him was tough, he was too booked, and so we had to settle for his associates. To make a long story short, the associates (One being a Neurologist, the other an Internist.) could not figure Kirk's case out. The Internist dropped the ball in the very beginning, and told us it had nothing to do with her end. This left the Neurologist with limited options, and so, Kirk was misdiagnosed with Encephalitis. (We ran every possible test on the Neurological end (MRI, Spinal Tap + Infectious Panel, a Bile Acid test, and more.) but we were still missing pieces to the Gastrointestinal puzzle.)

Kirk continued to get worse and worse, and so, the Neurologist didn't think there was anything she could do for Kirk anymore. (We had two more hospitalizations, and a consistent 3 - 6 seizures a day. And a record of 34 seizures on his worse day in 24 hours. During this time, this pattern did not seem to have any triggers, it seemed like they just kept coming and wouldn't stop.) We kept increasing and increasing medication, but it seemed that everything that was thrown at Kirk, had no effect to him. The amount of medication he was on, should have had him knocked out cold, but it never did so. (I started to wonder if this meant Kirk was not absorbing his medication. Could this be why he wasn't able to get rid of the Giardia for so long?)

Meanwhile, we decided to make an appointment with the second Internist who worked at the facility, whom was not board certified like the previous doctor. However, she was convinced Kirk did not have Encephalitis, but did not think she had the knowledge to help him out. Instead, she decided she would pull as much strings as possible to get us an appointment with the renowned double board specialists.

----------------------------------

Now that the background story is out of the way - Fast forward to present day. We have been seeing the double boarded specialist for a couple of months now, and have found out many more clues, but still have not hit the nail on the head. (We don't have any definitive diagnosis.) Here are the current, main factors/symptoms, that Kirk presents. Does this sound like anything to you guys? Is it possible that Kirk's EPI test in the past was a FALSE NEGATIVE? Could this be EPI, or is it something similar?

- We started off with an Endoscopy (And later various other tests we didn't think of testing before.), it was found that after 14 hours of fasting, Kirk's food had not budged from his small intestines. Not only were his small intestines backed up with food, but there was also a lot of inflammation, as well as lots of hair.

- In additional to his usual seizure medication and steroid regimen - Additional Steroids, Metoclopramide (To make his stomach contract.), as well as Digestive Enzymes (Prescription Enzymes for dogs with EPI.), and continued weekly B12 injections and daily capsules, were added to Kirk's medication regimen. It was clear that not only did Kirk not have the ability to move his food along, but he could not break it down either, at all. This meant that not only was Kirk not absorbing his food properly, but he also was not getting his medication properly either. In addition to all of this, we also began blending Kirk's food into a paste.

-Biopsies were taken during the Endoscopy, which came back with Helicobacter Overgrowth. So we also added Antibiotics.

- Kirk's stool began to harden (We still had really bad stool even after the Giardia and E Cuniculi, were cleared.) and he finally began putting on weight after having lost about 20 pounds. Also, instead of countless clusters per day, his seizure pattern had improved, and we had went on a month stretch, with no seizures. Kirk's personality is also back to how it was for the most part, with only a few pieces here and there still missing.

- After Kirk's round of Antibiotics were done, we had a repeated Endoscopy with Biopsies - The Helicobacter was cleared, and inflammation went down by 70%. There also was no food or hair sitting in the small intestines, and his stomach was contracting normally. (However, after having been on that month stretch, we are now at a seizure per day currently, for the past month and a half now.)

- Kirk's seizure triggers are still the same, with some additional thing's I've noticed. - If he exercises past a certain threshold (Which isn't too much.) his eyes get blood shot, then his stomach starts making noises, he then falls into a seizure. He then poops normally afterwards once he is up and with it again, and then is fine after pooping. If you don't put exercise in the mix, there are also times when he just has to poop in general (I watch him circle the Wee Wee Pads, but no poop comes out.), his eyes then get red and then he has a seizure before he can poop. He then poops once he is up and with it, and is fine.

It seems to me that when his stool is moving through him, something happens while it's moving that gives him a seizure. But shouldn't his stool be able to move smoothly because he is on the Metoclopramide? Or could this mean that his problem is not just in his upper digestive tract, but his lower as well? I am thinking of having a Colonoscopy done next, being this should be the only other test, at least that I can think of, that is left. I also have retested him for EPI, and am still waiting on the results. Also, is it possible that he could have a small blockage for the past year that is causing all of these issues, or is that not likely? (We have gotten a Sonogram done during routine blood work, twice, but they did not show anything.) Also, some of his recent blood work has shown that Kirk's B12 is actually off the charts high now, so we are now giving B12 shots every two weeks, and will test it again. Could the insanely high B12 contribute to his new seizure pattern? Are there any other tests I should be testing for, that you guys can suggest? If you guys need a list of Kirk's medication, or all the tests he's had done, please tell me and I will post it as soon as I can. I will also try to answer any questions best I can.

I'm really sorry the post is so long., or if this whole thing seems crazy. I hope this rings a bell to one of you out there, I try to google my questions, but I don't get any hits. I really want to know what this all could be. It's just so frustrating when you've been through four Veterinarians, three Neurologists, two Internists, and a double board Neurologist/Internist - and still no one can tell you definitely what the problem is. (I left out a few of the vets/specialists, because their visits didn't really have any significance during the back story.) Thank you so much to everyone who reads my post, I look forward to hearing from you!

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Jean
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Pet name: Kara, lost 10th May 2019
My name: Jean

Re: Stumped on Diagnosis - EPI or Something Else?

Post by Jean » 04 Nov 2018, 15:47

PLEASE BEHAVE,

We are here for everyone

I have notified Olesia our founder, she is well up on everything

I will look again tomorrow

but it makes me VERY angry vets do not want to know, and put it down to whatever

I hope she can say something

its out of my comfort zone

Jeanx
My name is Jean we live in Liverpool in Uk

I am the Forum Director which I am very proud of

My Kara born 21 July 2009 diagnosed with EPI by cTLI test August 2010 TLI = <1...folate 14 Cobalamin 408, shot down to 94, b12 injections every other day

Lowest weight 39 pounds

We used Panzym enzymes, Tylan and Chemeyes b12 capsules

Sadly, on 10th May 2019, we lost her to DM


Jeanx

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Patsy
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Re: Stumped on Diagnosis - EPI or Something Else?

Post by Patsy » 04 Nov 2018, 16:31

Way out of my league......is he still blind?
What has occurred to me was something I read months ago. It was to do with severe zinc deficiency in snow dogs like malamutes, and now seen in GSDs. The effects are skin problems, malabsorption, and the requirement of zinc to utilise taurine. Taurine deficiency affects the retina and can cause seizures.
I’m not a medical person, so I m just throwing yet another idea in the melting pot, and leave you with the joyless task of researching it with your vets.
It’s hard to imagine how difficult it’s been for you and your dog.
Springer spaniel Marti had Epi, PLE , MMM just to confuse me. She lived till 12yrs, chubby and happy despite eight years of epi.
Capsule enzymes suited her best. B12 supplements made her into a new dog!
After a cocker with PLN kidney disease, I now have two healthy rescues, a lively, suicidal , small ginger terrier, adopted with pneumonia, and gum disease needing nearly all his teeth out, and a fluffy grey toy poodle/terrier from Greece.

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Olesia711
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Re: Stumped on Diagnosis - EPI or Something Else?

Post by Olesia711 » 04 Nov 2018, 17:13

OMG... i feel so bad for Kirk and for you too...... this sounds like pure hell. I want to check on a few things before i say anything, but even though i am thinking of 2 things i really don't know if they are truly possibilities.
In the meantime.... i would check into what Patsy mentioned about severe zinc deficiency.....as that does check some of the boxes.

In the meantime.... with the seizures, not sure if this will help cause you really have no idea of the underlying problem... BUT... with idiopathic seizures, they are now discovering that a Ketogenic diet (a diet loaded with medium chain triglycerides - -like coconut oil) can actually help greatly reduce the seizures. They first notices this in children and now are finding it is working with dogs with seizures- -and are finding that this diet can actually be more beneficial than the seizure meds. I have created a new page with this research but have not uploaded it yet... If you are interested.... here is the research:
Epilepsy-Seizures & Diet.pdf
(1.09 MiB) Downloaded 273 times
Give me a few hours and i will get back to you on this. Not sure if i can be of any help or not, but i'll try.....
Olesia, was owned by Izzy, a 35lb Spanish Water Dog (SWD), Diagnosed at 1.5 years old - TLI results 1.. Izzy passed away on February 13, 2020 at 15 years old. She lived with EPI for 13+1/2 years. It was because of Izzy that Epi4Dogs was started... she was the inspiration. May her legacy of helping others with EPI continue for as long as needed.........

Barb
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Re: Stumped on Diagnosis - EPI or Something Else?

Post by Barb » 04 Nov 2018, 17:20

Hello, I just wrote you a long post and it disappeared.

I am so sorry you are going through all this with Kirk. It has to be so stressful. He is so fortunate to be with you.
I am also sorry that I don't have any solutions for you. But it seems like there has been some improvement with your new doctors.

My son took seizures, so I know some of your stress. They are very frightening, especially the cluster type that Kirk has had. I used to say that seizures were the one thing that I didn't think I could cope with......so of course, the Universe heard me and set out to prove me wrong. My son is an adult now and is well -controlled with medication. There are still things he has to watch, like not being sleep-deprived etc.

When our Bridge German Shepherd was 5, he began to take seizures also. (The Universe has a dark sense of humor.) The vet warned us that idiopathic seizures (the ones with no known cause) can be very difficult to control and will require more and more medication. This did not happen with Kip and he became fairly well-controlled with the initial dosage of meds. He did still react to thunderstorms and sometimes took partial seizures during them.

Although you don't have answers yet, it sounds like they are making some progress. As Patsy mentioned, there are connections to diet that might be a cause. My daughter's father-in-law started having seizures because he had extremely LOW SALT levels. Kirk's case seems more complicated, but the fact that he has improved must be giving the doctors more clues.

Please keep us informed. You are a wonderfully caring "parent" for Kirk. I hope that you find solutions soon.

Barb

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Olesia711
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Re: Stumped on Diagnosis - EPI or Something Else?

Post by Olesia711 » 04 Nov 2018, 19:29

Hi again,

Okay i checked on a few things that i was thinking of, but first please know that i am not a vet, just that i have been reading about gastro+conditions for over 10 years and over time, certain patterns/similarities have evolved.

The 2 conditions that i was thinking of, reading your detailed post(thank you!!) was possibly liver shunt disease (either congenital or systematic portosystemic shunt disease) or tick disease. The fact that one of your vets already honed in on encephalitis.... makes me wonder if tick disease was on her radar too... as tick disease can trigger encephalitis... but that appears to now be ruled out. SO........ just going on the gastro symptoms and it not being EPI, the blindness, the seizures.... and the fact that encephalitis was a consideration but now disregarded....and the fact that Kirk had gastro issues since a pup, the personality changes... the food connection, the low B12 initially (possibly anemia), i would definitely ask the vets (if they haven't already) to check into possible liver shunt disease. Liver shunt disease is not typically on vet's radar and it is also hard to diagnose, but one of the things that gets it under control is diet along with medication ..... i really don't know if this could be it, but please check into it, to me, it sounded like it checked most of the boxes.... if you too think it checks most of the boxes.... maybe have a conversation with your vet about checking into it.

The next thing that bubbled up for me is an optical disease (occipital lobe epilepsy) that is triggered by celiac disease. This too checked most of the boxes..... BUT the weird thing is is that it supposedly only happens in humans, i could not find where it happens in dogs... but then again, over the years i have learned to never say never. For example, the only dog breed that (to-date) actually can have a celiac disease is the red setter dog. Also.... just a side note..... most people who claim they have celiac disease supposedly really don't have it......but they did a study about 5 years ago and discovered that those that really do have celiac disease.... 30% go on to eventually develop clinical EPI.

What you can do is maybe try (with your vet's blessing first ) a true gluten free diet...... and see if this helps over all....
the other thing you can do is look into the liver shunt disease and check out their diet recommendations and try that and see if maybe that helps Kirk.... again..... check with your vet first.

I wish i could be of more help...

Please keep us posted.
Olesia, was owned by Izzy, a 35lb Spanish Water Dog (SWD), Diagnosed at 1.5 years old - TLI results 1.. Izzy passed away on February 13, 2020 at 15 years old. She lived with EPI for 13+1/2 years. It was because of Izzy that Epi4Dogs was started... she was the inspiration. May her legacy of helping others with EPI continue for as long as needed.........

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Coonley
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Re: Stumped on Diagnosis - EPI or Something Else?

Post by Coonley » 04 Nov 2018, 20:39

Thank you so much for reading my post and throwing out some suggestions everyone!

I had tested Kirk for a Liver Shunt via the Bile Acid Test, as well as a Protein C test, all of which came back normal. However, when we had these tests done, we did not know at the time that he could not break down or move his food along - So would this mean that the Bile Acid Test was inaccurate? (Being you have to be on an empty stomach, and we now know that Kirk's stomach wouldn't empty during that time.) Are there any other tests besides these two that can confirm a Liver Shunt?

The idea of possibly having an optical disease is also a very interesting point. (Also note, he is no longer blind. However, he does go blind for about 5 - 10 minutes after administering a Midazolam injection during a seizure, but the doctor said this is normal.) Going in hand with having his seizures when he has to poop, his eyes do get extremely red right before, he also will do this weird thing with his eyes just before the seizure. (I will try to attach a video.) What kind of tests would I have to have done in order to determine that?

As far as his Taurine, I had him tested for it in his recent blood work, and it came back normal. I had also requested a full mineral panel, but I am still waiting for the results on that. Hopefully the Zinc is included in the panel. Could having insanely high B12 have any negative side effects? I did receive his B12 levels, which are now off the charts high. (I think adding the Wonderlab capsules daily, on top of his weekly injections have shot it up very high.)

Kirk's diet for about a year now, has been Zignature Kangaroo. In the beginning they thought that Kirk may have food allergies, which is why we had switched him to Zignature Kangaroo to possibly rule this out. I really wanted to allergy test him, but we couldn't, and still can't because of all the steroids he's on. I waver as to if he's actually allergic to something, I think the reason why they thought allergy, was because any treats we'd give of a hard consistency (A bully stick, a biscuit, etc.) would always give him a seizure. But this is because (Which we found out later.) that he couldn't break it down, or move it through his system. I will definitely look into the Ketogenic diet! It really makes me feel bad that all he can eat is this one food, and that there is no diversity.

I figured I should probably list his medications to you guys. Is it also possible that one of his medications/vitamins is counteracting with another medication/vitamin? I had read somewhere that Folic Acid supplements can lower the effectiveness of Phenobarbital, but I'm not sure how true that is. Here is the List (He's on a lot of stuff, get ready!) :

- Keppra - 1875 MG 3x's per day

- Phenobarbital - 145.8 MG 2x's per day

- Banzel - 200 MG 2x's per day

- Prednisone - 20 MG 1x's per day

- Cyclosporine (Modified) - 100 MG 1x's per day (Reduced from 300 MG)

- Metroclopanide - 20 MG 2x's per day

- Omeprazole - 20 MG 1x's per day

- L Carnitine - 2000 MG 2x's per day

- Super B Complex - 1 Tab 1x's per day

- Wonderlab B12 + Folic Acid Capsules - 2 Capsules 1x's per day

- Pancrea Plus - 1 Tsp per meal (He eats twice a day.)

- Colon Rescue - 1 Tsp per meal

- Well N Good Digestive Enzymes + Probiotics - 2 tabs 1x's per day

- 1 CC B12 Injection every two weeks


To reiterate, is it possible that the EPI test that Kirk had done as a puppy, could have been falsely negative? Can this happen with this test? Are there factors that can make this test come back inaccurately? (I did re do the test in his most recent blood work, but it still hasn't come back yet.) I am wondering if it is possible that the test was wrong at the time, being that despite fasting Kirk, he was unable to empty his stomach during that time.

Another thing I forgot to mention also, ever since Kirk was a baby, he has had a small, herniated belly button. Past Veterinarians have told me that this was not an issue, and that it seemed to just be a little fatty deposit, upon touching it, so we never further investigated it. However, I was reading about how sometimes, the herniated belly button can get a tiny piece of the intestines stuck inside of it. Do you think that it's possible that this could be causing all of our problems?

One last story to note, a while back, some time before Kirk had seizures, I had a 1 Inch by 1 Inch gauze on my finger one day. We were playing tug of war, and I could feel the gauze slipping off of my finger, so I panicked and flung the toy we were playing with (Which I figured flung the gauze off of my finger also.) so I could prevent him from accidentally getting it in his mouth/swallowing it. I checked his mouth thoroughly, as well as checked all over the place for that gauze after, but never found it. So this may sound crazy, but is it possible that the gauze could be possibly be still inside of him (If he did accidentally swallow it.) and it has been causing a small blockage for a year? (Which could be, or a contributing factor to Kirk's problems.) Or is this unlikely?

Thank you so much again, everyone! I can't wait to hear from you all!

Judith
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Posts: 24
Country: United States
State: Delaware

Re: Stumped on Diagnosis - EPI or Something Else?

Post by Judith » 04 Nov 2018, 21:15

Hi

Sorry you are going through this. I'm not a vet and this is way out of my comfort zone. Did you have Kirk's cortisol levels tested before he was put on steroids? Is his glucose low when he has seizures? Did the steroids improve the GI symptoms and exercise intolerance?
Nate and Raymi's mom
Nate 4 year old Pembroke Welsh Corgi
EPI, typical Addison's disease and epilepsy
TLI 2.0 June 2016
Chemeyes enzyme capsules
Hydroxocobalamin injections weekly
0.5mg prednisolone daily for Addison's
Percorten-V/Zycortal injection every 28 days for Addison's
Zonisamide 2x for epilepsy

Raymi 6 year old Pembroke Welsh Corgi
Allergic to chicken and turkey

Eats Canine Caviar Venison kibble 3x

Nate and Raymi happily live in Bogotá, Colombia and Dover, Delaware.

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Coonley
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Re: Stumped on Diagnosis - EPI or Something Else?

Post by Coonley » 04 Nov 2018, 21:42

Hi Judith! Thank you for reading my post!

I will have to look at Kirk's previous blood work, I do not think we have ever had Cortisol levels tested - What does Cortisol do? What does it mean if it is high/low? When it was presumed that Kirk had Encephalitis, the Neurologist had put him on steroids without question. Is this something I can still test for, despite Kirk still being on steroids?

I am not sure if his Glucose drops after he has a seizure - Is there a way to find this out? We have, however, tested his Glucose during routine blood work, and it has always come back normal. At one point I was wondering if it were possible he were diabetic, but the doctor does not think so. Is there a specific test to check for diabetes, aside from checking Glucose, and testing via a Urinalysis? (Just in case there's a test we're missing.)

Also, Kirk has been on steroids for about six and a half months, and I do not think it has made a difference in terms of exercise intolerance. We were on a high dosage of Dexamethasone for awhile, as well as Atopica - When we did the first Endoscopy a couple of months later, his small intestines were severely inflamed. I am assuming that this means that these steroids did not have an impact on his inflammation either. But this may have been because he could not absorb medication properly, being that everything he'd ingest, would sit in his stomach/small intestines. After the Endoscopy, we switched from Dexamethasone to Prednisone, and it had seemed to improve the inflammation of his small intestines drastically during the second Endoscopy. The only thing that allows him to get away with exercising some, is when I give him a loading dose of Phenobarbital (Ontop of his normal dose.) after he has a seizure.

Judith
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Posts: 24
Country: United States
State: Delaware

Re: Stumped on Diagnosis - EPI or Something Else?

Post by Judith » 04 Nov 2018, 22:06

Hi

Cortisol regulates stress, digestion, metabolism, etc. There is no way to test it when a dog is on prednisone because it interferes with the results. Kirk would need to be off steroids for at least 6 weeks.

Kirk is on an extremely high dose of prednisone even for IBD. Have the vets tried budesonide, it specifically targets intestinal inflammation.

As far as the seizures, keppra has a 'honeymoon' period and then stops working. It happened when my dog was on it. Phenobarbital interferes with prednisone, so something to ask your vet about. KBr and zonisamide are other medicines you can try.

I see you are in New York. Would you be willing to travel to the University of Pennsylvania's Vet School? Dr Rebecka Hess is the head of internal medicine and is very good and thinks outside the box.
Nate and Raymi's mom
Nate 4 year old Pembroke Welsh Corgi
EPI, typical Addison's disease and epilepsy
TLI 2.0 June 2016
Chemeyes enzyme capsules
Hydroxocobalamin injections weekly
0.5mg prednisolone daily for Addison's
Percorten-V/Zycortal injection every 28 days for Addison's
Zonisamide 2x for epilepsy

Raymi 6 year old Pembroke Welsh Corgi
Allergic to chicken and turkey

Eats Canine Caviar Venison kibble 3x

Nate and Raymi happily live in Bogotá, Colombia and Dover, Delaware.

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