Ask:
Hi I am new here. So far I am really liking this site. My oldest son was just diagnosed with epileptic siezures. Petite mal. He also is ADD and he has hand tremors which the neurologist says are a tick. is anyone else dealing with this? He just started on Zarontin and he has been on Concerta for almost 2 years for the ADD. this new med. is really upsetting him. I know it will take some time for his body to get used to but he just isn't my usual kid right now. I'm just hoping for some advice on how to cope a little. I'm trying to look at this in a positive way... I mean this could be so much worse, he isn't dying, he will go on to be "normal" whatever that may be... he is otherwise healthy, and happy, we are lucky!! Sometimes I feel so "whiney" but he is my baby, he always will be. Then I think what right do I have? There are kids with cancer and parents dealing with so much more...how dare I?? Anyway I'm sorry I see I wrote a book here LOL . If anyone knows anything about this please let me know. Thanks
Answer:
I don't have a child with epilepsy, but my brother was diagnosed with it when he was 12, and I was 9. He, like your son, has the Petit Mal seizures. He was put on Phenobarbitol (sp?) and has been on it daily since. He is 34 and his last seizure was 12 years ago. I think he's only had about 4 seizures in his life.
I just wanted to assure you that many epileptics DO live a normal life. He was (and still is) an annoying big brother! His epilepsy did not prevent him from doing ANYTHING at all.
Answer:
I was diagnosed with petit mal seizures when a child. I took penobarbitol also, but eventually they had me stop taking it. There can be quite a few side effects to seizure meds, so if he doesn't get used to it, discuss it with your doctor and see if there's something else he can try. You may have to play around a while until you find something that works for him. It's almost like trial and error unfortunately.
Answer:
My little sister has petit mal epilepsy & took Zarontin for years. I believe that she's taking something else for it now (she's 28), but she started taking it when she was young (grade school age, I think) and was on it for years (into college). I don't think that she had any major problems with it. If you have any specific questions, I can ask her & I'm sure she'd be happy to help. They did try weaning her off it at one point, since you often outgrow petit mal epilepsy, but she hasn't outgrown it yet. With the medicine she has no restrictions for anything like driving.
Answer:
Thank You so much for your replies, at least I'm not alone!! Erin, any info your sister could give me would be soooo greatly appreciated!! As you can see we are new to this. The initial shock hasn't quite worn off yet. Anyway just wanted to say Thanks.
Answer:
Originally Posted by doodlebug
Thank You so much for your replies, at least I'm not alone!! Erin, any info your sister could give me would be soooo greatly appreciated!! As you can see we are new to this. The initial shock hasn't quite worn off yet. Anyway just wanted to say Thanks.
I sent her an email, and she said that she doesn't remember having any side effects from the Zarontin, but she started taking it when she was pretty young, so there may have been an adjustment period that she has long since forgotten.
Answer:
My daughter started having petit mal seizures at 2 months old. It was diagnosed at 8 months, and she was started on Phenabarbitol. After not much success with the medication, and her having 3 grand mals in her sleep...we switched to Keppra. We've had great success with it up until recently. She's started having what we believe are partial complex seizures, and has been having almost 30 a day, taking all usual daily medication. She's scheduled to see her neurologist on Tuesday for further treatment.
You aren't alone. If you'd like to talk, email me.
Answer:
WI Mom of 2 Thank You so much for your effort and asking your sister. It is very much appriciated. Mommy05 I'd love to talk with you!! I'm not very good at this computer stuff, so how exactly do I find your e-mail address?? LOL I know how to get to the sites that are saved on here and how to type in to search for stuff but thats about it. I'm not very technilogically advanced. Hope to talk to ya soon.