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My son is new to epilepsy and I"M VERY NERVOUS

Thu, 04/06/2006 - 15:04

Topic: Parents & Caregivers

Hi. My 4 1/2 year old son was just yesterday diagnosed with childhood absense epilepsy. I have noticed for a while that he at times seems in his own world, or that he doesn't always answer when he is spoken to. But I thought he was just being a typical boy. Then he had an incident at preschool when the teacher said he zoned out for about 1 minute. His faced looked blank, his eyes glazed over. Then he came out of it and he was fine. His ped thought it could be a seizure, and after an EEG, a neurologist diagnosed it as CAE. They would like to put him on zarontin, but I am very nervous doing so because he doesn't really seem that bad to me. Has anyone else struggled with this issue? Should I get a second opinion? Does anyone have a child with CAE who is not being medicated? Any help at all would be greatly appreciated. I know absolutely nothing about this disorder.

Comments

Re: My son is new to epilepsy and I"M VERY NERVOUS

Submitted by macsmom on Fri, 2006-04-07 - 14:49

My nine year old daughter was DX in December 2005 with CAE. She to started out with very few seizures but by the time she was DX was having 30+ a day. She started having trouble in school as she would miss instructions given by the teacher and struggled with timed math tests. I to was nervous about the medicine, but as her neuro reminded me as with any seizures is their safety. He wants to try to completely control her seizures, as there are not indicators to when they will happen and can occur when crossing the street, riding a bike, or just playing. She has been on Lamictal since December. Her neuro is introducing it slowly and it has helped. It is a hard issue and you never stop worrying about them, but this is a great site for information and support. Know that you are not alone. If you need to talk I'd be happy to listen.

Re: My son is new to epilepsy and I"M VERY NERVOUS

Submitted by mommy_b1 on Thu, 2006-04-20 - 21:58

Hi, I know exactly what you're going through! My daughter has Absence Seizures. She's not on any meds. because ped. neurologist said not necessary at this time. She's had them since she was 3. They are scary until you realize what they are. Yes, she goes back to what she was doing as well. I have been reading about the Absence Seizures on the internet and also ran across this site. It helps to know that you're not alone. She will start Kindergarten this Fall and I'm nervous about it. The neoroligist said that she should grow out of it. I don't want to medicate unless absolutely necessary due to the side effects. We should chat sometime. I'm glad I found your post! Just know that you're not alone! Michele B. from Iowa

Re: My son is new to epilepsy and I"M VERY NERVOUS

Submitted by connie1030 on Mon, 2009-03-02 - 15:47

I know this post is old, but I my situation is so similar and I am desperate to talk to someone. My e-mail is cmatherly@cox.net. I'll give more details once I see if you get this. Thanks!!

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