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New to this enlightening

Tue, 04/04/2017 - 17:55
Hello everyone my name is Booker Owens and i just recently found out my 5 yr old daughter has seizures in her sleep. My wife purely blames herself but it's not the case could happen to anyone but since we are new to this occurrence any feedback or consulting from one's coping with or parents coping for their children would be greatly appreciated please and thank you for your time and patience.

Comments

blame is definitely unhelpful

Submitted by Amy Jo on Tue, 2017-04-04 - 19:32
blame is definitely unhelpful but it can go hand in hand with worry, blame/past and worry/future. both heap stress on. still it's farther along than denial which happens frequently here (and it may periodically rear it's head). I don't know what your daughter's diagnosis is but know that most seizures end without intervention and most people have seizures controlled with medication. other problematic behaviors - losing sleep/staying up all night to watch over one's child (but if seizures are life threatening, there often options that help) or letting the diagnosis worry replace healthy habits. do get your child's specific diagnosis (as specific as they can do which could change as they understand more). do get enough sleep, exercise, and other helpful self care habits. be mindful of how epilepsy can make a parent extremely over protective as that itself can be debilitating for the child, treat your child as normally as possible.if your child has some form of LKE, ESES, or some encephalopathy then there is likely a private support group on facebook or other like location. if it is a rare epilepsy then there is a rare epilepsy network (search this site for info). if it is an intractable childhood epilepsy then there are other sites which focus (research, info, and/or support) on those.you will adjust, it will take some time. cut yourself and spouse some slack.

Thanks so much and yes I

Submitted by SOCRATEEZ on Tue, 2017-04-04 - 20:17
Thanks so much and yes I really have been on edge a little more than my wife but all good things come to good people and this is not just a one time thing. Constant support from loved ones as well as others coping and going through this will be tremendous for me and my family. Thank you for this insight and looking forward to getting hepl as well as giving help where needed.

Placing blame is not helpful

Submitted by just_joe on Tue, 2017-04-04 - 22:11
Placing blame is not helpful for anyone. She can get stressed and children can see it whether you believe it or not. Research the diagnosis and have the neurologist put things in simple plain English if needed. \Until you know all the test results and know the cause if they find one then live your life with hers as it was boing done before she has the seizures.. Adjustments can be made. But many parents that want their kids seizures controlled also start to over protect their kids. I know been there done that and I was the one with epilepsy. I was being put in a bottle and only came out with their permission. I left the house one afternoon and returned for my meds and left again without them knowing it. Yes they worried about me and where I was but all they had to do was find Missy. My dog was beside me. The next morning I wrapped the papers and delivered them like I did daily and went in . Mom was standing next to Pete and listening to him say I think he wants in not to worry as much as we have been. I said You got that right. I an like my brother and I was tired knowing you put me in a box with no doors and Larry gets to do everything he wants. Then understood and I also told Mom not top fret because somethings MIGHT happen to me. Mom I said I have been an accident looking for a place to happen since I was born. So yes relax and treat here like she is you precious little girl. She is just that. Please take what Amy Jo posted and do research in order to find out the best meds and procedures for your girl.. Amy Jo is a Mom. Me I'm just al old coddger that has been around dealing with my epilepsy for 50+ years. Amy Jo and others research more and do know far more then I do about many aspects. I would suggest you get the EF My Epilepsy Diary. It's in the help section\. Use it and note anything different on days she has seizures. If meds are late they can be posted. Give her neurologist permission to bring it up and he can look at the graphs and everything which can help when she is having more seizures then she had been. Adjustments can be made or medication changes or other procedures can be looked at.

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