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Old 07-01-2004, 09:15 PM
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parents of young children with Epilepsy

Hello, I am new to this so please bear with me. In January of this year my youngest (Charley age 4) was diagnosed with Epilepsy. I have done tons of research through the use of the Internet as well as asking our Neurologist a million and one questions. If there is anyone who knows about Epilepsy, I'd love to learn as much about it as possible!! Or if anyone would like to tell their expeiences with it, I would love to share. There is not a support group in our small town at this point and the nearest one is 3 hours away, so tht makes it difficult to attend. Thank you, momto4
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Old 07-03-2004, 05:53 PM
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My son had epilepsy at a young age. He is no longer with us. I would like to answer any questions that you have to the best of my ability. I had 16 years of experience in this as a mother. If you would like you can email me and I can tell you quite a bit. Let me know. Thanks.
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Old 07-04-2004, 01:12 PM
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My youngest son (1yr.) has had epilepsy his whole life due to a brain hemmorrage. We just started to wean him off of his Phenobarb. and we now have actually seen the seizures. Just the starring off to the left corner of his eyes. He was just at the Neurologist and I picked up some great pamplets. I would be more than happy to mail them out to you.
One thing that I have learned is not to overwhelm or obsess yourself. In the beginning I was contacting every organization, support group, Dr.'s etc. looking for answers nobody could really give me. I'm starting to slow down a little bit. But you want the best for your child and it's hard not knowing what to expect since a lot of people's opinions differ.
Best of luck to your family. The best news I can give you is that some forms of childhood epilepsy seem to be quite good of the child outgrowing them. And also there is no link between a lower intelligence score in an epileptic and a "normal" person.

Also I have some information on:
The Epilepsy Foundation of America.
4351 Garden City Dr.
Landover, MD 20785
1-800-EFA-1000 or 1-301-459-3700
www.efa.org

Hope this helps, if you ever need someone to talk to, please PM me!

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Old 07-04-2004, 01:18 PM
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Hello,

My 9 yr old son was diagnosed right before his 4th birthday with a seizure disorder or Epilepsy. 50% of seizures the Doctors know how the seizures started (example: hitting head, car accident etc.). The other 50% the doctors have no answers for. There are several kinds of seizures.

I learned on the internet what the kind of seizure my son had is called (Absence). My son spaces out then closes his eyes. My son has been on medication since the first episode. He started off on Depakote sprinkles, then they later added Tegretol since he still was having what they call breakthrough seizures. After almost 3 yrs of breakthrough seizures another Doctor decided to switch his off Tegretol to Topamax. But he had a reaction to the Depakote/ Topamax mix and now is on Keppra and Topamax. He is still having breakthrough seizures but the seizures have changed to spacing out spells for a few minutes. Luckily we don't have to end up in the Emergency Room, like we used to with his first seizures.

We have been told that he may outgrow having seizures. And over the years, we've seen him have different kinds of seizures.

We just take everyday one day at a time. If he doesn't have a seizure, it was a good day. It's been hard letting him go to school and be without me, but I've given the Teacher and the school nurse information about him just incase they have to take him to the E.R. without me. On the medical history for my son, it includes: name etc, meds and amounts, past seizures.
(After every seizure, I add it to the list and also update any new meds or amounts). Despite the seizures, my son is a happy active boy.

I hope this helps.

If you like you can contact me too.

Kathy

[email protected]
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Old 07-04-2004, 02:04 PM
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Child with seizures

I too have a son that was just diagnosised with seizures this past March. Unfortunally he got them from me. His are heredity but they are that the same as mine. Even though I had them as a child and you know what to expect, it is hard to see your child go through that. I do not have them any more but migrain headaches instead. I am hoping that my son will out grow them as well. The seizures did not affect me mentally. I am a Physical Therapist Assistant, have two sons and a husband and a loving family on both sides that are behind us all the way.

Do not worry yourself with looking up info. It will just make you worry that much more. I am sure he will be fine and I will keep you and your family in my prayers as you go through this new aspect on life for your son.

Unless the doctors tell you to, I would not hold him back from anything he wants to do. My son, who will be three in August, continues to take swimming and does whatever he likes (within reason of course).

I hope this gives you some encouragment.
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Old 07-04-2004, 02:11 PM
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young children

Thank you both for the info as well as the compassion. I agree that taking things one day at a time is the best way to handle this!! I am so thankful that I found this site (quite by accident I might add!) Everyone seems to be so nice and caring here!! Thanks to everone from the bottom of my heart!!!!!!!!!
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Old 07-06-2004, 06:39 AM
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I don't have a child with epilepsy, but I have had reason to research this for friends who have a daughter with it, and her's hasn't responded well to any of the meds they've given her. What I found all over the place is that a ketogenic diet is recommended for children with epilepsy. That is a low-carb diet that induces benign ketosis, such as the Atkins Diet. This is not a fad thing, this is suggested by Johns-Hopkins, Mayo Clinic, Stanford, and other reputable medical sources.

http://www.neuro.jhmi.edu/Epilepsy/keto.html
http://www.epilepsynse.org.uk/pages/...flets/keto.cfm
http://www.ninds.nih.gov/health_and_...s/epilepsy.htm
http://www.stanford.edu/group/ketodiet/FAQ.html
http://www.epilepsy.com/epilepsy/ketogenic_diet.html
http://www.wellnow.com/there/epilepsy.html

There are books on the subject, notably "The Ketogenic Diet: A Treatment for Epilepsy" by Dr John M. Freeman, which you can get at Amazon.com

Hope that helps!

Rani
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Old 07-06-2004, 01:56 PM
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epilepsy

thank you very much for the information!! I will look into this!!!
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Old 07-06-2004, 02:53 PM
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Glad to help and I hope this helps your son.

Rani
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Old 07-07-2004, 03:36 PM
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epilepsy

Our Neurologist has mentioned this diet, but, I wasn't very familiar with all that it entailed. Thanks for the information, I will do some research on it!!
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