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Hello from Jeff, Fand, and Li Ban

Posted: Sun Feb 24, 2019 1:06 pm
by jeffoire
I have two Irish Setter girls that I bought as pups from a rancher in Nebraska in the spring of 2017. I named them Fand and Li Ban, after the faery sisters in the story Li Ban started having grand mal seizures in September of 2018, coincidentally the day after we got back from a camping trip over Labor Day weekend. We started treating her with levetiracetam twice daily and added phenobarbital shortly thereafter. I spayed her in mid-November on the theory that estrogen can exacerbate the incidence of seizures, but it didn't help. With a few exceptions, she has had a seizure every eleven days. Over time, the seizures have been getting worse, and recently she has been experiencing cluster seizures which are occurring about a week apart. We added zonisamide in late January, and most recently have started potassium bromide after she suffered seven seizures in a five hour span early this month. I have been in correspondence with the woman managing the CBD oil study at the teaching hospital in Fort Collins, CO, and we were expecting that Li Ban would be eligible to be admitted at the end of this month, but since we just started the K-Bro, we now have to wait 12 weeks for the serum levels to stabilize. Initially, I had been giving her clonazepam as a "rescue" therapy to try to prevent cluster seizures, but recently that hasn't been helping, so we've just switched to intra-nasal midazolam (haven't had to actually use it yet, as the K-Br seems to be doing better than the other meds in terms of time between seizures).

So, those are the facts, but of course there are a lot of feelings as well. When she had her first seizure, I drove her as fast as I could to the vet, running every red light on the way. I manage to get through all of the protocols and conversations with the vet without losing my composure every time I've had to hospitalize her, but once I'm alone, the tears flow readily. We put down our Golden-Chow mix a couple days before Christmas of 2016, and the prospect of losing another treasured family member so soon weighs heavily on me.

I am interested in learning more about the DNA database mentioned on this site. If it is still active, I would be happy to submit samples from both Fand and LI Ban, and I will try to persuade the rancher to also submit samples from their parents. What exactly is the process for submitting samples?

Given what I've read about the rate of epilepsy in dogs, and if I'm doing my math correctly, there should be around 500,000 in the United States alone, and if only 1% of them were on this forum, that would mean 5,000 participants. So I'm wondering where everybody is? Should we be spreading the word more vigorously? I wasn't told about this site by my vet -- I just happened to find it after I decided that I should try reaching out to others.

Anyway, I'm glad I found this forum!

Re: Hello from Jeff, Fand, and Li Ban

Posted: Thu Feb 28, 2019 10:35 am
by GentleJacob's Mom
Hi Jeff,
First I have to say you have two very beautiful girls. MK's Mom, a member here, who is also passionate about her Irish Setters has been through the mill and back with epilepsy so you may want to read up on her journey. She's had two so far that have been diagnosed and I don't know anyone else that knows as much as she does about Irish Setters facing off with this disease.
Have you tried injectable Keppra to stave off clusters? If not that may be something to look into. Right after our Jake died neurologists started calling it a cluster buster. Have you seen a neurologist? They see this every day and can sometimes find things that our vets may miss. We gave our Jake extra Keppra (not XR) for a few days following a seizure to try to prevent clusters and to try and get more time between seizures. So that could be another thing to try. I do hope you can get her in the CBD oil study. There have been some dogs that have done well with it. Our vet ran a trial with very mixed results. I think once they get the best brands figured out the results will start to improve.
The first seizures are pure terror aren't they? We didn't know what was happening, but eventually we found our footing and with help of the wonderful people here Jake made it for over 11 years. I can understand trying to keep your composure especially around Li Ban, but please don't forget to take care of yourself. We can get so absorbed by this disease that we often forget or feel guilty for taking time that could be spent with our seizure dogs or taking care of others who are affected by it. My release of choice was weeding and sometimes my garden never looked better.
To submit a DNA sample you have the blood drawn by your vet, fill out the form, and send both in to CEN. I do hope your breeder will participate. Ours turned me down cold and used the old lie that they'd had a dog many years before but not recently all the while knowing that they'd heard from several others that their dogs were also diagnosed. That leads to the answer to one of your questions. If I had to point a finger of blame at one source for information not getting out or taken seriously it would be breeders. Not all but many turn a blind eye and play it down even when the evidence points right to bad breeding practices and continuing to breed seizure dogs because they don't want their line to get a bad name regardless of the headache and cost to those of us who love our dogs. The next would be the AKC, although in recent years they finally stepped up and admitted it's a problem after years of ignoring it. They're also the reason why many people generally don't feel epilepsy is the the problem it is. They ignore it so the general public doesn't take it seriously. As of 2017 800,000 dogs in the US were diagnosed so they had no choice. If breeders would do the right thing this disease could reduce by 50%. Our vet, who also has a seizure dog, agrees with that.
I'm glad you found us. Good luck and keep us updated on how you're doing.


Re: Hello from Jeff, Fand, and Li Ban

Posted: Wed Mar 13, 2019 2:50 pm
by jeffoire
Hello Lynne,

Yes, the vet hospital that we've used for over 20 years has several neurologists, who rotate every couple of days, and they are all more or less apprised of Li Ban's unfolding progress. Sometimes there are minor glitches in communication with respect to updating prescriptions/dosages, but overall, I have been satisfied with the treatment.

Injections at home have not been brought up as an option yet. Today is the first day I've had to try to use the intranasal atomizer. Li Ban jerks her head a lot, and salivates a lot, so I'm not sure how much of the midazolam is actually getting into her nasal membranes :roll: I just watched a youtube video where a guy demonstrates an entire training regimen for getting a dog to hold still and point its muzzle straight up and let the guy put the medicine in the nostrils (although it looks more like he's using a regular dropper instead of an atomizer).

The K-Br seems to be the "best" med so far -- Li Ban was doing fine for 33 days before this seizure, and I think it might have been longer, except I screwed up and ran out of Zonisamide on Sunday, and didn't get her back on it until last night, and I think the fluctuation is what set her off :oops: My sister is blaming the barometric pressure drop from the blizzard we're having.

But these longer calm spells are going to disqualify Li Ban for the CBD study. She has to have two seizures a month in order to be admitted, so if the K-Br keeps doing its job, then all I can do is try CBD on my own, and so far the best price I've found is $10 per 12hr dose (so $600 per month) -- unfortunately not in the range of the affordable for me.

I will aim for next month to submit DNA. Too much on my plate right now....