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New here -- lots of questions....
Mon, 04/04/2005 - 00:02Topic: Family & Friends
My 5 year old son has had seizures since he was 18 months old. The first one lasted over an hour and he was in ICU for 4 days. It turned out he had a lung infection and had spiked a high fever. At that time they did an EEG and MRI, which were both "normal". They dx'd him with Febrile Seizures and put him on Depakote. THAT was a horrible experience. He was completely out of it most of hte time....didn't talk, walked into walls, etc. Worst of all, he still had seizures. So, we took him off the Depakote (under our Dr.'s care) He was having a lot of ear infections at the time so we thought the fevers associated with that were the cause. He had tubes put in his ears at about 2 years old. He stopped having the seizures for the most part after that.In February 2004, he was very sick with the flu and had a seizure--then nothing until February 2005, when he got the flu. It's like the seizures are the FIRST sign that he is getting sick. Since the seizure in early February, he has had about 3 seizures that I am aware of. These have not be associated with a fever and they exhibit classic signs of a partial seizure (sometimes simple, sometimes complex). The doctor wants him on Neurontin. I am so leary of medication now, since we had such a bad experience with Depakote. I know they are all different, but I just don't like the side effects associated with ANY anti-convulsant. I want meds to improve his quality of life, not decrease it. He's extremely bright and full of life...I don't want that taken away from him with meds.At the same time, he has migraines with aura. I wonder if they are related?????I think this is all due to the fact that he was born with a heart defect...and had emergency surgery when he was 10 weeks old. During surgery, his 02 sats were in the teens. The surgeon told us that he would be brain damaged.....perhaps this is it.Thanks for listening. I'd love any insight on the medication. I want to be a responsible parent, but I'm just having a hard time giving my little guy meds with such side effects.ThanksStephanie
RE: New here -- lots of questions....
Submitted by pongosmommy on Mon, 2005-04-04 - 00:02
Hi Stephanie,My heart goes out to you and your son. I am the mother of a child that has Severe Asthma and also suffers from Migraines.I have had Migraines since I was a child and suffer from seizures.I tried Depakote but I was allergic. I am currently taking Zonegran. They say that it will make me sleepy and may make me get kidney stones...but I haven't had any troubles with it. I hope your son does well with the medicines. I wish you a lot of luck. You will find this is a great site (my opinion) and the people are wonderful. We are here for you, so if you need a shoulder, just let us know.Oh Yeah, My name is Dayna.