15 month old with idiopathic epilepsy - exploring options

[Madhura Khedkar]

Hi Everyone!

I am new to this site and this group. My 15 month old Goldendoodle (Einstein) was diagnosed with idiopathic epilepsy. He has had 5 seizures in around last 1.5 months the last one was close to being a cluster. After his second seizure, we did MRI, spinal tap and all blood tests and everyone was deemed to be normal. The doctor said they cannot rule out toxins unless you know what you are looking for. Also, with toxins, the dogs would react through vomiting / diarrhea. I spoke with the breeder and none of the litter mates or parents have had any epilepsy. After his second seizure the neurologist started him on 500 mg Keppra which he upped to 1000 mg when he had his third seizure. After his 4th and 5th seizure (which left him temporarily blind), we were asked to administer valium and he was given a loading dose of phenobarbital (and started on 64.8 mg of phenobarb - this is going to be in addition to keppra). His seizures have been 2 weeks, 3 weeks or 1 week apart. The last two happened on the same day. During the last one, he also started off with a focal seizure and then that changed to grand mal seizure. My husband and i both work and we have a camera trained on him (he is in a gated area). He has been out of it for a while. Refuses to play and looks very very sad. I am hoping thats phenobarb and the effect goes off. How has everyone's experience been with Phenobarb? Did it work in reducing the frequency or intensity? Any suggestions on what else we can do to take good care of our precious boy?

[Karen, Jasper and Jackdoodle]

I am very sorry to hear that Einstein is having these issues and hope that the meds help him.

One thing I want to mention is that I have yet to hear of any doodle breeder NOT claiming that none of her dogs have ever had a particular illness or medical condition when one is reported to her, no matter what. Over the years, we have had doodles with every type of disease or condition imaginable, and every single breeder, when told about it, has the same response: "None of my dogs has ever had that". I know of cases where more than one person reported the same issue to the breeder, and the response was still denial. I don't know if they are afraid that the owners will want financial reimbursement or what, but take that part of this with a grain of salt. Not that it helps you with what matters right now, which is to find the right treatment for sweet Einstein. 

I'm sure some of the other members here will have some good information for you about their experiences with the Phenobarb. 

[Madhura Khedkar]

Thanks Karen! I actually emailed all the other litter parents and none of them have seen anything so far. But he is also 15 months old so maybe they might see this in later years (i sure hope not for their sake). It is frustrating that we do not know the trigger / cause but at this point i have given up on that and started focusing on how we can control this. 

[Karen, Jasper and Jackdoodle]

Jack doesn't have epilepsy, but he has two different incurable immune mediated diseases, and when he was diagnosed with idiopathic Inflammatory Bowel Disease, I just about drove myself crazy trying to figure out what could have caused it. With the help of a very wise friend, I finally realized there was no way that I was ever going know, and that what mattered was to focus on figuring out a way to get it under control. So I understand what you're going through and I know how hard it is. I think that Einstein couldn't be in better hands. 

[Madhura Khedkar]

Thanks Karen. I am so sorry about Jack but i hope he is doing better now. It's tough because these fur creatures are so incredibly loving and strong. I feel helpless that they have to go through this. My best wishes to Jack and you.

[Karen, Jasper and Jackdoodle]

Thanks, and the same to you and Einstein. :) 

[Barb Maggie & Finley]

Only focal seizures here but we use phenobarb (along with chinese herbs)  -- it does help, just have to keep levels checked, and know that they will drink & pee more from it, especially if taking anything else that can cause that.  Ours is also hyper sensitive to all drugs/chemicals including vacs, so we give other drugs/chems/vacs very sparringly.

What breeder is Einstein from?  How long is health warranty & what does it cover?  Our breeder said, no, they'd never had problem either -- don't really believe them as both parent breeds are predisposed to seizures, especially poodles.

Good luck!

[Madhura Khedkar]

Thank you Barb! He is definitely drinking and wants to eat more (we are trying to control his food and treats). Einstein did get his 4th seizure 3 days after his booster vaccine so maybe there is a connection. The health warranty was for a year. Our breeder has offered to help and she is going to check with her vet as well. I am very glad the phenobarb is helping your baby. 

[Rebecca Orum]

Hi, our female Goldendoodle is on Pheno only. This has controlled her seizure activity pretty much. The only thing with this drug is their body becomes used to it and you have to jack the dose up. She started out on 62 m two times per day. That was a year ago last January. She is now on 124 m two times per day. But she acts completely normal. She runs and plays and acts like nothing is different. We try not to treat her differently and go for walks and play frisbee . For a few weeks in the beginning I seem to remember she acted tired. Good luck, I hope things improve for you.

[Madhura Khedkar]

Thank you Rebecca! Glad to know that pheno worked well for your fur baby and I hope it helps halt the seizure activity altogether. Our doctor told that we would need to test Einstein's blood levels at regular intervals to ensure that the pheno levels are at the requisite threshold. Putting on weight is another thing he cautioned us on. 

[Rebecca Orum]

All that is true. Love put on about five pounds, then she leveled out. We check her pheno levels every three months. She has gone back to daycare and is doing really well. I hope the best for you. Einstein is such a cute name. Oh by the way, if you have a pool or you are near a pond don't let him near them without someone watching. Take care

[Kathy Sheehan]

I'm so sorry to hear about Einstein and his seizures. It is one of the worst feelings of helplessness  as a fur-baby owner to witness! I just read thru all these responses and agree with everyone else. I got Cooper from a family friend at 3 months old who got him from a breeder in Colorado. After Cooper started having seizures, our friend talked to the breeder and she said none of her adult dogs or any of her puppies have ever had seizures, which I found hard to believe! Like Karen said, the breeder will always deny any health problems! Cooper turned 2 last May and started having seizures in June. A couple of things to keep in mind is that there is a special cocktail of meds that will work on each dog. But it takes awhile before finding what each dog needs. We are still working on Coopers Cocktail, He is on 2 tabs of 64.8 mg of phenobarbital twice a day and as of yesterday, 1000mg of potassium bromide once a day. The other thing is that it takes 2 or 3 wks for the dogs to get used to the phenobarbital. Cooper looked so dopey at first, it broke my heart to see him that way. He does good now on most days. Now the potassium is making him so sleepy. Like Rebecca said, if there is any type of water around, don't let Einstein out unsupervised. I live in Las Vegas and everyone has pools. I am so glad Cooper doesn't like my pool one bit! My vet told me they had a seizure dog come in last summer. He had been swimming in the pool with his owners and had a seizure and almost drown because they had a hard time getting his seizing body out of the water. Luckily he was ok! But it could of been a very bad situation if he was left unattended by the pool. One last bit of advice....keep a journal. I write down every detail of all of Coopers seizures, including his behavior a couple days before. So far nothing matches up, but hopefully one day soon it will! Good luck with Einstein! Give him a big doodle hug from me and Cooper!

[Madhura Khedkar]

Thank you Kathy! It is one of the worst feelings in the world. My husband and I are so wired and anxious that we react to any small movement of Einstein's - not good. I sincerely hope that Cooper's cocktail works the magic for him and gets rid of the seizures. I wish there was a perfect science to this. Thank you again for your kind words and a doodle hug from Einstein and I!