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when does it feel real!

Tue, 04/10/2012 - 16:43
hi, i have just been told that the dr. thinks my 8yr old son has JMepilepsy. my son's grandfather has grand mal epilepsy. it doesn't feel real yet. i'm so overwhelmed and feel kind of confused. we have been to 6 dr. appointments in month and a 1/2 related to his seizure. the dr. also thinks he is having seizure activity in his sleep. the dr. was suppost to call us yesterday after he scheduled his 48hr V EEG. he told us he wanted to schedule it for wednesday but when i called the office this morning they said he hasn't scheduled it yet. this is so frustrating, what is the hold up? he says that he can't offically be diagnosted untill he has another seizure but that we are going to start meds soon anyway. i am having a hard time going on like normal again. i am a college student and school seems so irrelavent right now. when my son isn't home i just want to stay in bed and not leave my house. i just expected the dr. to tell me i was over reacting or imagining this, or some thing else. i never expected the EEG to show up abnormal even though his eyes started to track funny durring it and it took me calling his name twice to respond to me. am i being selfish by being a mope. i feel like i've been thrown in a new world where i don't know anything or even how to react!

Comments

Re: when does it feel real!

Submitted by Massey on Tue, 2012-04-10 - 19:52

It's been 6 years. I think at about 5 that thought started lessoning.

A few words of advice. Get into a hospital that is listed in the top 30 (preferrably the top 6) in epilepsy in the country now. It'll save you years of wrong diagnosis(s), alot of confusion, and heartache. Get yourself, your son, and others in your family in counciling right now. Get the school to test his cognitive functions now, and then later when on meds so you know if he has or what area of weakness he may have.... and make sure all his teachers know it. And plan to keep doing that. And if you can kind other kids his age with similar types of epilepsy that would be great for him too. And get into a support group/activities with other epileptics.

Your life is gonna change.

This is the advice I wish someone had given me. Good luck.

P.S. If you think he has them at night put a baby moniter in his room so you hear. That's exactly how I first saw my son's seizure (and I did find him blue).

It's been 6 years. I think at about 5 that thought started lessoning.

A few words of advice. Get into a hospital that is listed in the top 30 (preferrably the top 6) in epilepsy in the country now. It'll save you years of wrong diagnosis(s), alot of confusion, and heartache. Get yourself, your son, and others in your family in counciling right now. Get the school to test his cognitive functions now, and then later when on meds so you know if he has or what area of weakness he may have.... and make sure all his teachers know it. And plan to keep doing that. And if you can kind other kids his age with similar types of epilepsy that would be great for him too. And get into a support group/activities with other epileptics.

Your life is gonna change.

This is the advice I wish someone had given me. Good luck.

P.S. If you think he has them at night put a baby moniter in his room so you hear. That's exactly how I first saw my son's seizure (and I did find him blue).

Re: when does it feel real!

Submitted by ajameghan on Tue, 2012-04-10 - 20:11

thank you!

thank you!

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