Hi my name is Jeannie and I have a 10 year old that has been suffering from seizure's since she turned 2. Corinna only gets her seizures when she sleeps she is now on 2 meds tripeptal and zonagram she has been on 7 other seizure medications and she is still getting one seziure a week either on a wednesday night or a thursday night. After reading some of the stories here I guess I could say I am blessed that she only gets them once a week but even that is very hard to cope with not to mention she has speech problems and was left back twice she is 10 and only going into the 3rd grade in september and is struggling. My husband and I believe that the meds make her very drowsy and it is hard for her to concentate in school. We have taken her to 5 diffrent neurologist, she has seen a cardiologist, she was tested for sleep apnea and we are now taking her to a hollgistic doctor in hopes of taking her off these med. We have been told that the only cure for her is the surgery but we are so scared to even go that route. If I knew that we would get a 100 percent postitive result from the surgery I would defenitly go for it but nothing is for sure. All I want is for my daughter to have a normal healthy life. I feel like every day is a struggle for her in school and not to say the least they make fun of her because of her speech. I just thank God that her younger brother is in the same class with her and he protects her. I am glad I found this forum because I am getting so much information. I am now going to look into getting her checked by an allergist to see if maybe there is some kind of food that could be triggering her seizure's. I would like to know if there is any one else who's child only gets seizure's in thier sleep.
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Welcome
Hello and welcome to this wonderful site. I am so sorry to hear about your daughter's struggles with seizures. My daughter is 11 years old and started having seizures when she was 3. She also started having them primarily in her sleep. She's been only on two different medications with pretty positive success.
I've always thought the same way - we were blessed that she did not have as many seizures as many kids. But to be honest, watching our kids suffer and struggle at any time is so painful. I think any mom or dad going through this would agree that it is all hard to handle.
This site has a wonderful selection of great information. There are podcasts, articles and links to other sites that provide a lot of valuable stuff. There are so many opportunities to discover more ideas about managing seizures. Have you ever looked into the Keto diet? Or modified Atkins? I've heard some very positive things about these.
I think you are very smart looking into triggers. I've always found it very helpful to keep a careful log of her seizure activity. Anything questionable, I note it. My daughter also takes probiotics and we keep her sugar intake very low. I am careful that we keep her on a strict schedule of med dosing and sleep. These things seem to help my little girl. You just never know what might help!
I recommend you looking around the site at the vast amount of information. I also really value this chat forum. There is nothing like talking to other parents who truly understand how you are feeling. Everyone has very rich experiences with great information.
Again, a very warm welcome to you. Sending you many hugs.
Jen