7 Year Old with Epilepsy

I have a child who's Shuddering Attacks are fading as well.

I would call Warmline Family Resource Center at ###-###-#### or 800-660-7995. They have a great staff who will be able to help point you the right support group, services, and classes. If you can't get the answers you need, here are some names...

Warmline Staff:

Diane and Lori at ###-###-#### in Yolo County.

Anne-Marie, Alison, Candace, Courtney, and Laura at ###-###-#### in Placer County.

Corey in El Dorado County.

Casey in Nevada County.

Nancy in South Lake Tahoe.

Laura, Cid, Tracey, Raymond and Al in Sacramento County.

Hi S., I am a mom who has a daughter that was diagnosed with Lennox Gastaut Syndrome which is the worst type of Epilepsy that anyone could have. The age I was told that she would live to, the average, was 9. She just had her 9th B/D, Sept.6th. I spent many years at Valley Childrens Hospital with her, always attempting new medications that didn't seem to work very well. I decided to put her on the Ketogenic Diet, which I am truly amazed, worked extremely well. My daughter has been seizure free now for a little over 3 years. She is doing amazing. She is mentally about the age of a 3 year old but she is learning to talk, which I was told she never would do, she is running and walking around, like I was told she more then likely would never do. She is so amazing. We weaned her off of the diet in the latter part of 2007 and she now eats normal food like we do. She's been weaned off of all of her medication now also. I am truly blessed that she is doing as well as she is. She has been released from her Neurologist of 8 years. I still have the fears when she goes to school or if she is staying with her father, of them not knowing what to do in case something were to happen. I have another daughter, age 7, they look like twins. I'm always asked if they are since my 9 year old is the same size as my 7 year old. She's growing and learning at her own pace.

I am so grateful today that she no longer has the seizures and that she is doing so well, today. I do not know what tomorrow brings, but I do know that I have a faith in God unlike I ever had before. I owe it to Him for the miracles of what has happened to her in her recovery.

I hope that this has helped you. Take care and God Bless.

There is a seizure support group at Parents Helping Parents in San Jose www.php.com They may have some good information to share and may be able to put you in touch with other parents who have had similar experiences.

My younger sister, who is now 29 years old, had epilepsy from age 8 to about 13 or 14, when it just somehow went away. She never had seizures during the day, only at night when she was asleep. I remember her doctors saying puberty may have somehow led to her outgrowing it. My parents were always wary about her being on meds (Tegretol) so they read up a lot about foods, especially this one book called "Food is Your Best Medicine". They read something about magnesium helping a lot with epilepsy, so you may want to look into helping your daughter get more magnesium in her diet.

I do not have a child with epilepsy but I was one. I didn't grow out of it but did go for long periods of time without seizures. Sometimes 2-3 years.

I would suggest seeing a pediatric neurologist if there is one near you. When I was a child, our family doctor tried to treat my epilepsy and mishandled it.

While there are a lot better anti convulsant meds out now, most of them made me feel tired and somewhat dull. If her EEG is okay and she can be weaned off of the meds without a significant increase in seizures or in the severity of them, then maybe she can do without the meds.

As far as specifically getting off of the meds, I'd listen to the doctor's instructions on that. Going off of the meds too fast can actually cause seizures.

Also, the Epilepsy Foundation is a great help. They have a website and an 800 number.

Good luck to you.

Hi S.,

We are fortunate that none of our children have seizures, but I grew up having grand mal seizures. They began when I was about 7 and continued until I was 14. They weren't all that frequent but still challenging to deal with. I under went a lot of tests, but they never found a concrete answer as to why I was having them. They basically said that they thought my brain and hormones were developing faster than my body and it was creating enough of an imbalance to creat seizures. They started me on phenobarbitol and I had a lot of awful side effects. Sleepiness, lack of apetite, hallucinations, problems at school. The worst part is that I still had seizures on the medicine. My parents chose to take me off the drug. I think it is important to follow the drs. orders for weaning off meds, my parents stopped me cold turkey and looking back now I had terrible withdrawal symptoms. I wasn't aware of what was happening as a kid but I recognize it now. I was glad to be off of medication though. I was only on it a few months and I have very few memories of that time in my life. It is like looking back through a fog. It wasn't working well anyway and at least then I felt normal other then when I had a seizure and for the day afterward. Drugs that they use today have come a long way and I know there are a lot more options.
Stress and and sleep deprivation were definitely triggers for me. I would have a seizure on Christmas morning, or on my Birthday or when I had a big test coming up at school. It was frustrating.
I think you should follow your instincts and your daughters cues. Generally they wean children slowly off the drugs, all the while monitoring how they manage and react. If she begins to have siezures again maybe you can at least lower the dose until you find a dosage that works for her and provides control over the epilepsy with the fewest side effects. I think epilepsy and seizures need a lot more research in order to develop a better understanding of how and why they occur. I hope your daughter grows out of it the way I did. If not, she will learn to cope and take care of herself and be responsible for her own health. If I can ever answer any questions or help out please don't hesitate to contact me. Take care and let us know what happens.

1) http://www.cnsfoundation.org/site/News2?page=NewsArticle&...

2) http://www.cnsfoundation.org/site/News2?news_iv_ctrl=-1&a...

3) http://www.epipro.com/k_diet.html

Love, G.. :0)
http://stemcellforautism.blogspot.com/

Hi S.,

I learned a lot about Epilepsy. My son developed it after being hit in the head playing with a baseball bat several years ago. I went to a specialist and she had me make a list of everything he eats during the day so she could test to see what he was allergic to. She has found so many children developing this condition starting from different allergies to foods. My sons condition was created by too much sugar another friend's daughter was allergic to corn.
The body is not circulating and releasing what we eat the way it is suppose to in most cases and it all has an effect on how we feel.

They have found that magnetic therapy helps people with this condition and many other challenges.

If you would like more info email me.

Have a great day.

N. Marie
____@____.com

Hi S.,
I'm not sure if I will be of any help or not but thought I would tell you my story. I was diagnosed w/epilepsy during my second pregnancy, I was 21 at the time. I took many med's over several years. Some left me feeling like I was in a constant fog (1,000 miligrams phenobarbital a day). I came down with walking pneumonia & started to wean myself from the medicine (it was just too much, I was missing my boys growing up walking around in a daze).
That was about 15 yrs ago......I have only had one petit-mal since. I do try to control my stress as I notice that when I'm stressed is when I am most likely to have a seizure. I was told at the time that pregnancy can be a cause??? But then why they kept me medicated for years,I don't really know, and they never gave me any answers.... so I took control..... this is not for everyone & I wouldn't suggest self prescribing, I just thought I would mention that you can grow out of it. Last time I had a physical, my internist told me the same thing.....I hope that is what you were hopeing to hear.....
Good Luck, I wish I had time to tell you more but.....lisa