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Nephew was diagnosed with Epilepsy. Need help for dad

Wed, 01/06/2010 - 11:18

Hello,

My 5 year old nephew was just diagnosed with epilepsy and my brother is having a hard time with dealing with it. Can anyone give him some advice on what things he can do to help ease the shock and fearful feeling he gets when his son has a seizure?

My brother can't sleep, is always checking and double checking on his son. He looks at all the negatives when he surfs the net and is just in a stress out way. I told him he needs to be strong and positive for his son, but this is hard when this is so new. His son has had 3 seizures in 1 month and although this prolly doesn't seem like a lot to a lot of you, to him it is terrible and scary. His seizures consist of the eyes rolling in the back of the head and foaming at the mouth, not sure about the whole shaking and convulsions part. He was put on Keppra and I have read on hear that this drug is gonna be scary too. Anything that anyone can offer up for advice would be so awesome. Thanks in advance. Just a concerned sister and Aunt!!!

Comments

Re: Nephew was diagnosed with Epilepsy. Need help for dad

Submitted by Shakey Mom on Wed, 2010-01-06 - 12:35

I am 33 years old and have had epilepsy since I was very young.. 

Kids are smart and he will pick up on dad's anxiety.  Epilepsy is not normal, but it is certainly not a death sentence either.  If dad is terrified then his son will pick up on that and percieve his condition to be a horrible, scarey thing.  Tell the son that his condition makes him special.  Get him one of those cool medical alert bracelets that no one else has. 

There are sooo many different kinds of meds that are available.  All have possible side effects.  If all the side effects listed on my meds were definate, I would be a bald, skinny woman with a rash and excessive arm and facial hair.  Just because the side effect is listed does not mean it is going to happen.   If an unpleasant side effect does occur try a new drug.  It took me over 2 years to find the right combonation/ dose of meds.

I do wish you all the best of luck.

I am 33 years old and have had epilepsy since I was very young.. 

Kids are smart and he will pick up on dad's anxiety.  Epilepsy is not normal, but it is certainly not a death sentence either.  If dad is terrified then his son will pick up on that and percieve his condition to be a horrible, scarey thing.  Tell the son that his condition makes him special.  Get him one of those cool medical alert bracelets that no one else has. 

There are sooo many different kinds of meds that are available.  All have possible side effects.  If all the side effects listed on my meds were definate, I would be a bald, skinny woman with a rash and excessive arm and facial hair.  Just because the side effect is listed does not mean it is going to happen.   If an unpleasant side effect does occur try a new drug.  It took me over 2 years to find the right combonation/ dose of meds.

I do wish you all the best of luck.

Re: Nephew was diagnosed with Epilepsy. Need help for dad

Submitted by wyboemail on Wed, 2010-01-06 - 13:23

Hi, My son was dx with BRE when he was 8 years old. He just turned 11 and is being weaned off the keppra as we speak. We have tried different things to help the keppra side effects and with the seizures and have had great success.

Please email me or have your brother email me at wyboemail@yahoo.com if he would like to hear our story.

Curt

Hi, My son was dx with BRE when he was 8 years old. He just turned 11 and is being weaned off the keppra as we speak. We have tried different things to help the keppra side effects and with the seizures and have had great success.

Please email me or have your brother email me at wyboemail@yahoo.com if he would like to hear our story.

Curt

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