I am in desperate need to find answers for my soon to be 4yr old daughter. She had her 1st febrile seizure when she was 5mths. it lasted 55mins. she was put on phenobarbatol but found to be allergic & switched to keppra & giving diastat to give at the onset of an episode. She had 2more prolonged febrile episodes (both 3mths apart) 1-45min & 1-30min both times in witch we spent a week in the PICU. after discussing with her doctor that we wanted to take her off the med. not only because it was not stopping the seizures but she was having horrible side effects (nervous rocking & she went from being a sweet & cuddly infant to screaming and not wanting to be held or touched for that matter she just wanted to be in the swing) so she was switched to topamax.
The topamax seemed to work in the beginning,if she did have an episode it was more average in time 5-10min. all though they did seem to come way more frequently. shortly after her 1st birthday we moved from michigan to florida & that meant a new doctor. her 1st seizure she had down here was again a prolonged 1 in which the dose of topamax she was given was increased to 1am&2pm.. she went about 4-5mths. seizure free then again another prolonged episode but this time it was followed up by mini cluster seizures in which she would just space out. again the dose was increased 2am&pm. As time passed and it went back to shorter episodes and the doctor just upped the dose again to 2am&3pm. we then started to notice she was not progressing with the rest of the children in her daycare and regressing we expressed our concerns to her doctors who said not to worry about it that some children don't talk well until they are almost 3 & he never heard of that as a side effect. she was also very tiny compared to the others her age we were also told not to worry.
The day of her 3rd birthday landed us in the emergency room due to yet another prolonged episode with mini clusters to follow that they could not get to stop and we were transfered to the local children's hospital to spend a week in the PICU. Due to her doctor taking her off the topmax and switching her to depakote which he had been waiting to do but had to wait until she was 3, when I asked what the difference was since she had been the same size since she was 2(she still fit in some 6-9mth bottoms & hovered around 18-22lbs.) I was never giving a straight answer but the med seemed to work so we left it at that, plus her speech started to come back as well. she had 2more average seizures both times in which the doctor just increased the dose both times so we went from 1pill a day to 3pills a day. we recently visited her doctor where we expressed our concerns that we were doing the same thing but just with a new med. & expressed our concerns that the med was not stopping the seizures so what good was it doing giving it to her. not to mention the how hard it is having a child that has known how to swallow pill like an adult since she was 1 and having at least 6 EEG's & MRI's which showed us nothing, & to top it off she was seeming to regress again. we were told that that was not an option and the next step we were to decide on was whether to stay the course or up the dose to 2am&pm.
We went home that night & talked about it with our families & wanting to get a second opinion we decided that we would slowly ween her off the med. ourself and see what difference it would make since she has been on medication all but 5mths of her little life. 3months later she had been med free for about a week and we had our 1st seizure this time to my worst fear w/out a fever we took her in to be seen & they did not find anything to be wrong with her. I called the doctor to inform them of what had happened and my concerns. I asked if we could have a EEG & MRI done since she has never had either with out being on some type of medication, they agreed. here we are 1 week later and this morning we were awakened to the sound of her having another seizure on the baby monitor, this one again with no fever! I don't know what to do and everyone that we have come in contact with say they have never heard a case like hers, I know she can't be the only one out there. Why is it that all of her tests before did not show that she was epileptic or is this something that we have caused by taking her off the medication?
I can't put into words the way I am feeling now, but febrile seizures do run in my dads side of the family and I had them when I was growing up they skip every other child all the way back to my great grandpa except me and my father we both had them. The doctor say it is just a coiencendence but nobody had had anywhere near the severity of hers so I have no one to go to for past experience. If anyone has anything that might be helpful to us I would greatly appreciate it. We really do not want to put her back on depakote since she has started to show development again and it was not keeping away the seizures anyway. Please help!