Seizure Disorders and Epilepsy

My 14 month daughter has a seizure disorder. It started when she was about 6 months. we have been to MANY doctors and are still kooking into everything we can. We are not willing to except " sometimes we never know what causes the seizures". It's tough at times but we all do what we can for our kids.

1 mom found this helpful

My sons has epilepsy. He is almost 9 years and has been seizure free for almost 4 years. He was medicated with Tegratol and then Depakote from 7 months old until 3 years ago. He had been seizure free for over a year and so we weaned him off. Dr Parvez Pohowalla is our neurologist and he is the best, in my opinion. His number is ###-###-####.

HI A.
I HAVE A 1O YEAR OLD SON WITH A SEIZURE DISORDER. HE WAS ON DEPAKOTE FOR A LONG TIME BUT NEVER WAS THERAPUTIC. WE RECENTLY SWITCHED HIM TO LAMICITL AND HE SEEMS TO BE DOING PRETTY WELL. I CAN NEVER TELL WHEN HE HAS HIS SEIZURES BUT BY HIS EEG'S HE HAS THEM CONSTANTLY. IT'S A HARD THING TO DEAL WITH. I WOULD LOVE TO TALK TO YOU ABOUT IT MORE. WHAT KIND DOES YOUR DAUGHTER HAVE? AND WHERE ABOUT DO YOU LIVE? YOU CAN E-MAIL ME AT ____@____.com THANKS

my 19 yrs old has seizures. what kind do u have to deal with ? we have moto seizers . that means he just blanks out no idea of anything. there is a thing called raising special kids if can find the link i will send it to u. you can do a search 4 other groups 2 withthe same probelm if u want. if u have a question not sure i'll know the answer but u can ask. is she in self contained classes at school? you can also try ddd. they sould help.
A.

Hi A.,
My name is S., and I recieved your request. I don't have children with seizures, but I do work in the field. I work for a Social Service agency helping adults w/ Epilepsy live independently. Anyway, I know a bit about resources, Neurologist in the Minneapolis area. You could also (if you haven't already) connect with the Epilepsy Foundation. Feel free to e-mail me if you have questions, want to chat, or anything. ____@____.com
S.

My daughter is 11 and has what is know as TICS it is very hard to explain it perfectly. Point is that I know how hard it is and how you feel and some of what your daughter feels. There is hope and life. My daughter is living a full life. She is happy and no longer lets it run her.

My son is 6yrs. old and he has been having seizures since he was three. It can be terrifying, I especially worry about him seizing at school. He has gone 5 months without a major episode and we are celebrating. He is one amazing kid. It's nice to hear from other moms in this situation - We aren't alone! I wish you well!

My daughter is 5 and has epilepsy, she has daily seizures. lets talk soon. I have lots of contacts in the area, good docs and lots of info. thanks. T. [____@____.com]

I have lived with Epilepsy for over 10 years. Several years ago I helped a Community College in Southern Cali start a support group to help and teach students with Epilepsy. There is an alternative method besides medications that have been proven to help when all else fails. Please email me and I can give you that information and if you need to talk. My biggest fear is passing it on. I never knew till I was pregnant with my son that it can become genetic. My son is 15 months and appears to be fine (Thank God). Here is my email: ____@____.com

Hi, A.,

I have a 14 yo daughter who was diagnosed with Generalized Seizure Disorder (Epilepsy) when she was just short of 12. She has all three types. Grand Mals, Complex Partials and Petite Mals. She has been about 18 months seizure-free. Feel free to email me at ____@____.com, Kat

Yes my son joshua has epilespy!

Hi,A.. My name is A.. My daughter, now 6, began having seizures when she was thress. We have been through so much with her, from medication changes and even to surgeries. I will be more than happy to answer any questions that I can for you. I know that this is an extremely scary time for you all. Please feel free to e-mail me directly or call me. Good luck to all of you. A.

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Hi A.. My children don't have epilepsy, but I do. I have had it since I was about twenty. (diagnosed with it then) I probably had it before that age. I am on medication for it and it does help. I know that I have heard that kids sometimes grow out of it? I know that I will probably have mine for the rest of my life. As long as the medication works I am fine. I can do everything on a normal basis. If you have any more quetions let me know, maybe I can help a little. T.

Hi A.:

I have a six year old son with a slight seizure disorder; they started out as febrile (fever) seizures but then also he had afebrile seizures. He would not have them very often (maybe 2-3 times per year) but we soon came to the realization he was not only having fever seizures. An EEG showed abnormal brainwaves and we've had him on Depakote and now Depakene (liquid form) for 2.5+ years. We did have one breakthrough episode where his meds were not controlling the seizure disorder well enough. Now we have his med levels checked more regularly and just learn everything we can. That is sometimes the difficulty because neurological disorders are not as easily pin-pointed as others.

Whatever you might have questions or concerns about, please feel free to drop a line. It can be a real roller coaster and many have been up and down on it!

C. M in ND!

A.:
I do not have children with Epilepsy, but my brother has had Epilepsy for over 20 years. So, I can definitely be a source of support. I have started to do some research on the internet to try and give my brother some alternatives to medication-such a diet, herbal and natural healing. Within this past year, he was staying with us off & on in Salt Lake possibly looking into brain surgery. I don't know what he has decided. Please stay in touch via email-I would like to keep in touch regarding this subject: ____@____.com

Take Care,
K.

A.-My son is 71/2 yrs old.He is my youngest. He was born with Lissencephaly which means smooth brain. As a result of this he has siezures. We are currently have him on topomax and keppra.
A little about me.Married 25 years to my soul mate,I have a 14 yr boy and a 12 year old boy.

M.

My daughter has epilepsy. Some days she has constant seizures every 1-2 minutes that last 5-15 seconds. On her good days she will have seizures about every 20 minutes. She has also had several grand mals. We have tried many drugs. She is on 4 for now which only help he not have the grandmals. She will be having surgery next week in Seattle.