Seizure Disorders and Epilepsy

Updated on July 30, 2009
A.O. asks from Colorado Springs, CO
20 answers

Just seeing if there are any moms around here that have kids with a seizure disorder or epilepsy.

Thanks'
A

1 mom found this helpful

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T.P.

answers from Rochester on

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.

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J.S.

answers from Phoenix on

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
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K.S.

answers from Phoenix on

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 [email protected]____.com, Kat

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M.

answers from Minneapolis on

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.

K.B.

answers from Salt Lake City on

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: [email protected]____.com

Take Care,
K.

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C.H.

answers from Boise on

Hi there. I have a 3 year old son with Epilepsy.. He started having seizures at 14 months old, followed by Todd's Peralasis. He is medicated with Tegratol twice a day, he has grand mal and petite mal seizures. If I can help in anyway please let me know. [email protected]____.com

~C.

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V.

answers from Honolulu on

Hi A., my daughter, Emma, who is now 6 and a half has a seizure disorder, plus PVL (perventriuclar leukomalacia, which means she deosn't have all the white matter in her brain that she need for her gross motor) and has been diagnod at being on the AUtistm spectrum. We went to WA when she was about 18 month, as we couldn't get Tripler to do anything. Went through a series of peds, proably 5, which is a lot on an island. I'm now in Seattle agan, and as a fluke caught with an old friend whose mom used to owna special school. Turn out her mom had just retired, but instead of selling the scholl ank making zillions, she turned it into a non profit. What an angel. A couple days later, I got a call from my friend again, which surprised me as we had gotten all caught up and I thought she was in DC. (We met in Politics both in Oly and Seattle and she's been a foreign service ageint for almost 17 years0. Anyway, she said her mom had made some calls and wanted us to get to SEattle ASAP. WE were already in Eastern WA, visiting from Hawaii, where the schools are awful, at least for emma they have been. My best friend from middle school wanted us to cat/house sit while she had a funeral for her mother in Idaho, so, an hour after Melissa called , we were flying, literally to the plane and got the last two seats. Melissa, the agent even paid for our tickets, and I felt so himilated. (My Navy hubby has been in CA for six months 'studying' a new girlfriend which he spent about $12,000 on, which was Emma's therapy money and pool money. Anyway, I really like our military neuro, but he just monitors on Tegretol and does and EEG when I force him. The nero pysch we met with FOUR times this week, for three hours a day, except for today which was the parent meeting, is just fantastic. She said there's thee school that would probaby accept Emma. Since we were suppposed to fly out last Monday and she was supposed to start a new school on Thursday, looks like we are committing to moving over here. The neuro, Dr. Gayle Faye is her name, is very professional, asks all the right questions and you can even fill our oall the paperwork on line. She wants us to go to LA to a seizure clinic they work closely with, as we all feel the seizures are causing the erractic behvior, forgetfulness and all the things that go with us. I think the whole thing will turn into a lawsuit, as that's what every doctor, Ot, PT, SP, and pysch has asked if i'm going to do. The thought of a lawsuit is overhwelming at this stage, as they'll put me on trial as I have spinal cord injru and she was 32 premature. Anyway, i am rambling bad, as it is 2:20am and we got home from the docs and a festival not al that long ago. Hard to keep on the schedule, eating, sleeping ,med, when you're traveling. By the way, 'they', whoever they are, said that almost 30 percent of the kids on teh Autism scale evn just a tiny bit get them. I'm not sure if Ive helped you in any way, I do know the Mayo clincic has a seizure clinic of some kind with the 'Ketogenic' diet that has helped thousands of kids. Something you might want to check out. Email me if my ramblng di make sence.

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C.M.

answers from Bismarck on

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!

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A.

answers from Denver on

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.

[email protected]____.com
###-###-####

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J.S.

answers from San Diego on

Yes my son joshua has epilespy!

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K.B.

answers from Minneapolis on

Just wanted to let everyone know that I have started a support group for parents of special needs kids. Hope you will check it out and join us!
http://www.meetup.com/specialneedscaregivers/

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K.B.

answers from Portland on

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 ###-###-####.

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T.Z.

answers from Portland on

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. [[email protected]____.com]

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C.A.

answers from Pocatello on

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!

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S.

answers from Phoenix on

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.

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S.

answers from Minneapolis on

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. [email protected]____.com
S.

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A.C.

answers from Phoenix on

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.

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M.H.

answers from Salt Lake City on

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 [email protected]____.com THANKS

L.C.

answers from Biloxi on

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.

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J.L.

answers from Las Vegas on

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: [email protected]____.com

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