3 month old with seizures

Dear JBishop, I do understand how you feel with the worry and stuff.... I have been watching my daughter have seizures since she was 2 1/2 years of age, she will be turning 10 in March. If she was just diagnoised then you have to give the meds sometime to build up in her system. I personally was not fond of Phenobarb just cause it didn't have good effects on my daughter. It put her in a coma like state for 3 weeks. All she did was sleep she just couldn't wake up. Of course she was in the hospital so they knew what to keep an eye out for. It could be that her body just has to get use to the dose and that maybe why she is just sleeping so much. But if she is having that many seizures she is going to be tired... they say that for every minute that someone has a seizure it is like they run 1 mile. So if she is having 8-15 seizures a day then depending on how long they last lets just say 1 minute per seizure then her body feels like it is running 8-15 miles a day. That's alot. Also I found that with my daughter that sometimes when they put her on a new med then she doesn't want to eat. Their bodies just have to adjust to everything, just take a deep breath and relax. I know that it is hard and people still tell me the samething from time to time but I know its hard. If you wish to talk more feel free you can also email me I think my email is available if not let me know and I can give it to you. I am here if you need to talk this is what I have found I need to do... I have just started a charity for pediatric epilepsy....where I live just because I am sick and tired of there not being enough research being done because of lack of funds and then we have no where to turn. I hope I helped you alittle bite. LavenderCure

Hi There, Welcome to the site. I am very sorry that you are having to deal with this. It is such a difficult thing to watch you baby go through this. I am also having problems with my son and Tonic clonic seizures (see blog). My son had a bad go a week ago with a cluster of seizures with the last one as long as 20 minutes, and I learned something new. Brace yourself mom, because I am about to sound like a crazy woman. The Epileptologist/neurologist that was on call at the hospital that night asked me if my son had been started on the 2 week trail of vitamin B6 (also called pyradoxine). I answered that he had not. The doctor then proceeded to tell me that this was an EXTREEMLY long shot, but there is a small percent of the population that are born with a pyradoxine dependance. When the body no longer has enough of vitamin B6 in its system it effects the coating of the neurological pathways and seizures are the result. I know that it sounds crazy, but I would ask your doctor about this. I will say that there is a lot of reading material about it on the Internet, but not a lot of doctors use this as a first step with children and seizures because there is not yet a lot of evidence to back it up. My original neurologist does not really believe in this theory. We are continuing on with our son's regular medication, but have added 100 mg of vitamin B6 a day. My son has not had a cluster since we started the two week trial (knock on wood). I recently found out through a friend of mine that her cousin had complete results with vitamin B6 when he started having multiple seizures at age 4. He is now 7 and seizure free. I just wanted to put this out there in case you have not tried it, as we all need a little hope. Who knows? I may have found out about this so that I could tell you for your daughter and it may not work for my son! If you want to check it out just Google pyridoxine and seizures. I really believe that since a 2 week trial can not be harmful why not give it a try (along with existing meds of course). Good luck with everything. Please let me know how she is doing. Tresa (mama bear)