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Help for mom

Thu, 06/18/2015 - 11:02

 

Good morning, 

I am writing as a new mom to an epileptic child. My daughter who has had no medical issues or problems since birth all of a sudden started having tonic/clinic seizures at 7 years old. It's only been 2 months since she had her first seizure and since then has had 4 additional ones. They are all at night and last between 3-5 minutes. Her first seizure occurred in our truck while she was napping on a road trip and all her siblings were there to witness. We have turned it for them to a positive and how it's good they witnessed so they know how to deal with them should they be around when it happens again. But to be honest, it scared the living crap out of all of us! Anyways, my question is for parents or any caregivers of how you deal with the fear? Since she has them at night I am awake most nights. We bought an emfit sensor and we have a camera in the room. I worry every night and honestly hate night now. I have 3 other kids as well and have found myself struggling trying to balance it all. I also find support is not there much. People start off really wondering what is going in etc, but now they don't even ask or want to learn. Her grandparents won't babysit at night, nor do we have support to babysit at night that aren't scared to deal with it if it should happen.  We have started her on Keppra and so far we are two weeks without seizure, but I still can't settle at night. I also get tired because my husband travels, I am always the one who deals with it all. I apologize for being all over the place, but I feel bad feeling the way I do, I am scared it's something more, I feel alone and that no one really cares or willing to learn or help. Advice from others who may have felt the same way or ideas are very welcome!! We have an MRI in August as well. Thank you very much!

 

 

 

Comments

You are not aloneI see that

Submitted by Anonymous on Fri, 2015-06-19 - 18:36
You are not aloneI see that there are several people that have aready responded to your post. They are parents and are dealing with their kids and epilepsy. I was the kid that truned into a teen back when I was first diagnosed. Be thankful for technology. I love mothers (fathers too) that are concerned about their kids and need answers. My Mom didn't have the internet. We didn't have forums back then because there were no home computers, Pease red Mereloaded and Amy Jos posts since it is their kids that have epilepsy. They did the research and they know what it is dealing with a kid who has epilpesy. While I am the one in the family that has epilepsy. I know my Mom wierded out and step father tried blocking it out.  You have already done what most parents wouldn't do and that was letting your other childres see what a seizure looks like and yes it can be used as a positive. Relax and know that like my mother and Mereloaded and Amy Jo you too will find ways to know more and help your child do better. Mereloaded's son has been doing great. Is doing really good in school and now drives. She may not say she is happy with his driving but she really love the facts that he is doing well and has been seizure free for some time now I hope this helps and please come back and let us know how things are going Joe

Hi,I've been reading through

Submitted by tinaweinberger@msn.com on Tue, 2015-07-07 - 11:58
Hi,I've been reading through all of these, and I have in turn, cried and sympathized.  My son is 16 and was diagnosed at 9. Just yesterday, genetic testing results revealed Lafora Disease. Hard to take - he's not getting better. In a wheelchair and can't feed himself.  My story isn't your story though, we all have a different one to tell. Please don't be frightened. Cat girl, your advice to Nina is spot on and I wanted to say thanks for that, and for reaching out.  I don't know of anyone in my area to talk to; there are no close support groups.  This forum is a fantastic idea to support each other.  Question for anyone reading:  I am looking into medical cannabis for my son - we have tried so many conventional meds for him that I've lost track of how many, and they have all eventually failed- has anyone else tried it to treat your child's epilepsy? If so, I could use some advice. I don't know how much time my son has left - he is already meeting some of the drastic symptoms of Lafora and I'm afraid for him.  Anybody? T. Weinberger

sorry, I misspoke the advice

Submitted by tinaweinberger@msn.com on Tue, 2015-07-07 - 12:00
sorry, I misspoke the advice wasn't for Nina, but walkerry above...Cheers

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