Comment: My daughter has epilepsy and

(See in situ)


My daughter has epilepsy and

My daughter has epilepsy and had her first seizure when she was 18months old w/a fever. She's 15 now and has been on so many different meds and combinations of meds! It has been a long road of trying to control the seizures and balance the side effects of the medications. Some meds like Keppra did absolutely nothing to control the seizures and made her an emotional mess! Her seizures are well controlled now and she hasn't had one in over a year(she takes Lamictal/Primadone combo). I think she was on Trileptal(oxcarbazepine) at one point but it didn't work for us...I don't remember anything terribly negative about it though.

It's true that many toddlers will have febrile seizures due to an immature central nervous system that can't quite handle a quick spike in temperature, but, they don't last 40min! Has your baby had an EEG yet? Its is kinda like an ECG, but for the brain...it will let the doctor know if there is undetected seizure activity and where in the brain it is originating. The fever triggered the seizure, but, something else was wrong to make it last so long.

I highly recommend keeping a journal of any seizure activity she may have...write down how long it lasted, what she was doing at the time it started, was it full body or just a little face twitching? Staring off and not responding when called could also be seizure activity. Also, keep something in the house and car that can stop seizures like Ativan or Valium. When my daughter was little I kept rectal Diastat(valium gel in a syringe I would put in her rectum if she had a seizure). As she got older, she developed an "aura" which she described as "a metal taste in my mouth"...and she would say, "mom, I have that taste in my mouth", and I would give her something right away! Have a five minute rule. Meaning, don't call the paramedics unless the seizure is longer than 5min. So, it's very important to look at the clock right when they start and time them. Going to the ER will do no good if the seizure has stopped on it's own! (unless the seizure is triggered by a fever which is the result of a raging ear infection or something and she needs an antibiotic)...

Lastly, I just want to say, you have to trust your doctor. If you don't like him/her, look for a second opinion. Even if you have to drive an hour for a Pediatric Neurologist you like, its so worth it! My daughter's doctor trusts my opinion and he listens to me...once I even weaned her off all her meds against his advice and he didn't even scold me:) Anyway, hopefully her case is not as extreme as ours! Who knows maybe Trileptal will do the trick and she won't even have any more!! ~Best of luck~