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My son is new to epilepsy and I'M VERY NERVOUS
Thu, 04/06/2006 - 14:43Topic: Medication Issues
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 andy m on Sun, 2006-04-16 - 10:35
Hi there,
I was very similar as a child, it was described as been 'away with the fairies'. I am told that I would be just sat there staring into space with a teacher or my parents calling my name or asking me a question and I would not reply, it would maybe only last a minute or so. It didn't develop into full blown epilepsy until the onset of puberty when all hell broke loose. You're lucky in a way to have an early diagnoses and probably plenty of time for it to develope either way, it's quite possible that it will disappear all together.
Get as many opinions as you can and as for medication new developments are being made all the time. I'm not speaking as a parent but as someone who wasn't diagnosed early enough and then when I was I was given the wrong type of meds. I hope some of this helps you and I hope everything works out o.k. for both your son and you.
Andy
Re: Re: My son is new to epilepsy and I'M VERY NERVOUS
Submitted by parentbaby on Tue, 2006-04-25 - 15:03
Hi there. I have been living with Epilepsy now for 15 years. I was diagnosed at the Age of 14 after having a massive seizure while on holiday (sun reflecting off the sea into my eyes). I nearly drowned by jumping out of the boat in water above my head! What a baptism of fire.
After being diagnosed I realized that I had been having small seizures all of my life, howeve I had put it down to day-ja-voo (sorry if the spelling is wrong).
It then took 4 years of trying Medications and doses before we got it under control. As life goes on there are more factors that become relevant that can induce seizures - staying up late, drinking etc. I wish I hadn't had to go through that and loose my driving licence at a time when all of my peers had transport I didn't making me feel even more of an outside.
I guess what I am trying to say is that there are advantage in trying to control the seizures, Zoning out may seem insignificant but to those in the know but to others it can appear like you are day dreaming, not paying attention or just being rude.
James
Learning the true cost of the US Health Service.
Re: Re: Re: Re: My son is new to epilepsy and I'M VERY NERVOUS
Submitted by solis on Thu, 2006-04-06 - 17:13
Epilepsy.com on Generalized and Partial Seizures -> http://www.epilepsy.com/epilepsy/types_seizures.html Btw..the reason 'grand mal' (= French for 'great sickness') and 'petit mal' (= French for 'small sickness') are no longer used is that they wrongly describe the condition via what another person sees, and NOT what the patient experiences.