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Seven Year Old Son - Second Opinion
Sun, 09/20/2015 - 12:01A year ago, our six year old son had an eight hour episode of continuous seizures that landed him in the ICU at Yale for a few days. They put him on Keppra twice a day, and he hasn't had another seizure since.
I'm thinking about getting a second opinion, because they didn't find anything that night that caused his seizures. Visually you could see there was some kind of seizure activity, but nothing was showing up on any of the monitors or tests they were running. We went for his follow up with the neurologist this week, and he's upping my son's seizure meds from 4.4ml per day to 6, because he said that's what he should have been getting. Is it normal to up the dosage if there hasn't been any additonal seizure activity? My son never had a seizure before the one episode, and hasn't had anything since then. Funny thing is that the neurologist knew he was taking 2ml in the morning and 2.4ml at night, but is now saying that it was probably a clerical error somewhere and that my son should have been getting 2ml in the morning and 4ml at night. When we saw him six months ago, he knew my son was on 2.4ml twice a day, and decreased one to 2ml because it was affecting him at school.
I'm just trying to figure out where to go with all of this. The neurologist isn't even scheduling any testing to try to find out if my son is epilieptic. I'm still convinced that he had some kind of reaction to coconut sugar that weekend (anyone have experience with sensitivity to foods that affect seizure activity?), or that he might have ingested something. It's very confusing, so hopefully someone here can help me understand all of this a little bit. I'm just not comfortable with increasing his meds if it's not completely necessary. Thanks for any help you can give!
As others have mentioned I
Submitted by kristicain12@gmail.com on Thu, 2015-10-22 - 23:40
As others have mentioned I think your son's Keppra treatment is very much needed. And no there is nothing unusual about upping the dose with his age. Doses are based on weight so your son's body will naturally lower the Keppra dose as he grows and gains weight unless the dosage is increased accordingly.Most of my comments on these boards ardently advocate for seeking a second opinion IF seizure control is not achieved and/or quality of life is significantly limited due to side effects. But if your son is one of the lucky ones who was blessed with both seizure control and limited side effects/ good quality of life on your first try, by all means leave it alone! Once you find this perfect balance it is like a fragile egg, you have to be very careful not to break it because once you lose seizure control, particularly with a history of status, your odds are very slim of regaining that control again (this comes directly from my daughter's neuro who brought my daughter to her own fragile egg after years of misery & status).In other good news you are probably not very many years away from a wean conversation.So unless you are experiencing quality of life impairing side effects, by all means listen to your doctor! It certainly sounds like you are in good hands!