Questions for Parents of Young Kids with Epilepsy

I'm surprised they did not start him off on Depakote - it seems to be the least harsh of the drugs for seizures! It must be taken on schedule as it does not remain in the system long if doses are missed!

My daughter was on it - but then she "knew" she didn't need it anymore and started having seizures again due to not following her regime! And lied to the docs saying she was taking it - and would take it for a couple days just before a blood draw to check levels. She's been on zonegran (when pregnant) and I think is back on Keppra now ... I no longer ask due to the lies!

My husband is on depakote as a mood stabilzier. I have an epileptic nephew who has been on depakote a time or two during his growing up years but is now going to have the vegas nerve surgery, have you asked about that option?
The lawsuit commercials scare us off about a LOT of different drugs, depakote has been used for years, you most likely can safely give it a try.

Have you read the depakote lawsuits? I did a quick google search and the biggies seem to be:
1) use of depakote during pregnancy resulting in birth defects. obviously.... not an issue for your son, unless he also has a uterus, which you may not have mentioned, I guess.
2) the Arkansas lawsuit, where off-label depakote was marketed and used for non-epilepsy related conditions (schizophrenia, etc) which was technically a false advertising lawsuit.... not a reason to not use depakote for it's actual intended purpose (to reduce seizure in epileptic patients).

Aside from that, most of the side effects seem to be gastro-intestinal.

If my daughter needed and was prescribed depakote (just based on the info I found in the last 5 min) I would have no reservations about using that medication.

I was prescribed Lamictal (lamotrigine), which is commonly used to treat seizures. I had absolutely NO side effects (and actually didn't find that the medication was helpful to me, so I stopped taking it). But, the biggest side effect from that was a rash, which they said was most common if you don't "ramp up" and instead just start at a high dose. Oh, well, I just googled that..... and apparently the FDA has found a link between lamictal and aseptic meningitis. So, I wouldn't do that.

I hope you find something that works for your son. Good Luck.

*also - as far as daycare or pre-school, I would maybe look for a nanny. I'm not sure what your needs are as far as timing / hours / financial etc, but I used sittercity and care.com and on both sites you will see lots of care givers who have experience with *special needs*, but aren't THAT expensive.... (although you'll also find RNs who are quite expensive).

The sitter I used for my daughter grew up with a brother with muscular dystrophy and had also nannied for a boy with cerbal palsy. (she found my then 8 year old daughter with her contstant but random girlie-pre-tween-hystrionics, nail polish needs and contstant hair-braiding demands a piece of cake, by comparison).
I would guess your son would be a *special need* and you might even find someone who has cared for a child with epilepsy before, which would be an additional resource for your family.

My grandson is on Depakote. He is on it as a mood stabilizer. He is a violent little boy. We have not heard anything about it being a bad medication though.

When I worked with kids that had developmental disabilities there were several that had seizures along with their other issues. They all took Dilantin or maybe Phenobarbital. It is a pretty hard med to work with due to all the other things that it can do to the body. We had to be extra vigilant with their teeth and making sure to not mix certain medications with it. It is so hard to remember all the side effects and possible interactions.

I am glad you were finally able to find out what was going on with your little guy. I hope you can find the right med soon and be able to control the seizures.

What kind of seizures do he have? I found out I had temporal lobe epilepsy as a teenager and I have been on just about every medication in the book. (topamax, lamictal, phenobarbital, carbitrol,keppra etc. etc.) The first one I tried was phenobarbital. It worked but made my gums swell. I had braces at the time so imagine the thick gums and braces. I also was in denial about epilepsy and was having seizures all the time cause I wasnt taking my meds.The absolutely worse one is topamax. Dont ever put your son on it. It has HORRIBLE side effects that will ruin his life. Memory lost is the worse, severe weight loss along with others. But it totally 100% controlled my seizures. But the benifits definitely donot outweigh the risks.Lamictal was the best, with no side effects (that I know of). I havent tried Depakote but I just started taking Keppra. Hope all goes well with this one. I feel blessehighly favored by God because when I was on topamax, I had 3 beautiful, perfectly healthy kids. No side effects or malformations. Best of luck to you and your son. Know that all medicines have some sort of side effect. Where one person may have a side effect, the next person may not. Its trial and error when it comes down to meds for epilepsy. Best of luck!

My son takes Keppra, and thank the Lord has had no side effects. He has not had any seizures for a little while now, again thank the Lord, so scary isnt' it? I think there is usually a period of trial and error, chopping and changing, with epilepsy meds. There is a great forum on epilepsy.com.

I'm so sorry for your situation. I don't have any epilepsy experience, but one of my favorite bloggers has a son who has been seizure free for many years now. What worked for their family was the Ketogenic Diet.

Here are a couple of her posts that talk about her experience.

http://www.adventuresinbabywearing.com/2006/03/2-year-die...