My son - Epilepsy Message Board

TaterbugTwins · 08-09-2006, 03:51 PM

Hi. I came to the board originally for the cancer section as my Grandma was jsut told yesterday she has bone cancer.

I am greatful to have found this board though. I have 15 month old twins and one of them was recently diagnosed with epilepsy.

Garrett is 15 months old, twin b, born at 36 weeks and 3 days. He did not have any problems at birth. (His twin was transported at birth to a level 3 nicu where he spent 18 days.) A few days after birth I called the nurses and told them he was having a seizure. They blew me off and told me I was nervous and it was just newborn immaturity of the nervous system. I belived them and went on. Fast forward. We saw what we now know were absence seizures from birth till feb. In Feb Garrett was hospitalized with what they thought was meningitis. At that time he started having more seizures. Finally I got a Dr. to see one and we were set up with neurology. Now we are medicated for Epilepsy.

He is on his 2nd med. He was started on Trileptal. He had a horrible reaction to it. He turned into a zombi. He would not eat, his seizures actually got worse and he would crawl and just fall.

He was then switched to Topomax Sprinkle. We started out on 15 mg am and pm. Now we are taking 25 mg am and pm. It is still not controlling his seizures though.

So far we have had multiple absence seizures, and multiple partial seizures. We have been blessed that we have only had 1 grand-mal seizure.

neurowreck · 08-09-2006, 06:42 PM

Well, 36 weeks is good for twins, so that's a plus. I'm sorry you all are having to go through this. Have they identified any sort of syndrome, or are they just labelling seizures as they appear? There are so many childhood epilepsy syndromes with multiple types of seizures- and specific treatments for them.

Have you asked if the meds he's on have been FDA approved for a child that young? Most kids that age are started on more standard drugs (unless there is a syndrome going on that responds to those meds, may just need adjustment of doses)....would let the neuro know about the change in appetite, unsteady gait, falls, etc..... might need drug levels checked, or a different med..... just an idea....

TaterbugTwins · 08-10-2006, 08:26 AM

Right now the Dr. said he is concerned with getting the seizures under control rather than finding the cause. Seems a little backwards to me, but I am not the one with the degree, he is. As for the meds, I am not real sure about the FDA approval and such. I have jsut been along for the ride b/c this is all so new to me.