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My son is suffering from Epilepsy

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My 10 yr old son is suffering from Absence Seizure for the past yr and a half. The medications he takes is as follows. depakote Sprinkles, zonergran, diamox and lamictal. He takes these meds twice and day and it's not helping him.

His spelling and reading has been affected by this and he's not retaining anything he learns in school. He's been dropping weight and he's always so tired. Not being able to play with his peers.

If there's anyone out there who has some advice please feel free to let me know.

It really feels bad being a mother not being able to help your son when he goes through this which is everyday. Sad

He had steroids giving to him through iv and that didn't help either. What can we do next??? Arrow Arrow Arrow Arrow
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replied July 23rd, 2003
Your Son
Your son is in my prayers. From what I've learned there's not a lot we can do. My son was 19 before getting hit with Epileptic seizures. Have you heard about the high Fat Ketogenic Diet? On Dateline last night I found out that 50 to 70% of kids that go on this high fat diet don't have seizures and eventually grow out of it. Hope your son grows out of it.
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replied July 25th, 2003
Re: My son is suffering from Epilepsy
Tish wrote:
My 10 yr old son is suffering from Absence Seizure for the past yr and a half. The medications he takes is as follows. depakote Sprinkles, zonergran, diamox and lamictal. He takes these meds twice and day and it's not helping him.

His spelling and reading has been affected by this and he's not retaining anything he learns in school. He's been dropping weight and he's always so tired. Not being able to play with his peers.

If there's anyone out there who has some advice please feel free to let me know.

It really feels bad being a mother not being able to help your son when he goes through this which is everyday. Sad

He had steroids giving to him through iv and that didn't help either. What can we do next??? Arrow Arrow Arrow Arrow
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replied July 25th, 2003
I've had siezures since I was 8. I am now 30. There are always times when it is tough. (Peers, family, misunderstandings, etc.) However, for me, I have learned a few things that affect my pet. mal and grand mal siezures: 1. TV/Computer frequency. ( only on certain ones, usually the older ones) 2. Aspartame and like products. 3. Food that I eat. I usually do better when I have a balance on fat and vegetables. I don't do well with sugar sweets. 3. But probably one of the biggest factors for me it getting my sleep. If I don't get enough sleep most every night. I will eventually have a siezure.

A few things that may help some of the family members/friends of loved ones with siezures: It's not always that bad. For me it feels like I'm taking a nap. It looks worse to those around me. I might loose my memory at times, or not have very much energy, but remember it doesn't mean that I'm dumb. I have a rather high IQ. Many people that I know, with epilepsy, do to.

I found ways to deal with it by finding a job that I can be self employed. Worked out situations so I always had someone to take me around to run errands etc. Also try getting in touch with your local rehab center some times they can help with financial aid and employment.

P.S. For me, when I was going into and during parts of the siezures, I could hear extremely well, but I couldn't always respond. One thing that helped me to pull out of a siezure was when people around me started asking me questions. It seemed to help me get my train of thought back on track.

Good Luck.

I hope this can help, I'm not an expert, but I know what works for me.
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replied July 29th, 2003
That is awful to hear.The ketogenic diet has had such great results.I was just checking on them and they sound great.My prayers are with you and I hope that you find relief for your child soon.Here are some of the I have checked into www.stanford.edu/group/ketodiet/. best wishes for a heathy andhappy child, Tammy Very Happy
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replied July 29th, 2003
???
Does he get migraines?
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replied August 3rd, 2003
Re:My Son is suffering from Epilepsy
Tish,
My Daughter has had Epilepsy since she was six. She is now thirty and
has never been controlled. However, it sounds like your son may be
overmedicated. He shouldn't be so tired all the time. I noticed from
your post that you are in Ct. Try calling Dr. Orrin Devinsky at NYU
Medical Center in NYC. The team is wonderful-especially Dr. Blanca
Vasquez. They only take cases of people who are not being controlled-
and they are really very caring and kind. They offer the lastest technology and many options.
I hope all goes well with your son-
Linda
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replied August 3rd, 2003
Experienced User
my sympathy is with you
That is a very tough thing to handle. My prayers are with you also, Tish.
Patrick
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replied August 16th, 2003
Have Faith
Dear tish,
well I really understand what u are going thru.......There is something I would really like you to know.......There is an ngo organization called art of living....It is mainly a process leading a person to knowing oneself it takes you deep within yourself....It is a practise of the mind just sone simple breathing exercises which have helped and cured thousands of people worldwide of several diseases and stress relase......It is mainly yoga and it boosts one's energy...Epilepsy is all about uneven brain waves I am myself an epiliptic and all we need to do is keep our brain in the most stable state and that is what this teaches us....Tish they have this special courses for children and these courses are hapening in 131 countries all over the world.......I really think this wud help ur kid....Give him immunity to take the medications and make him active too as these simple breathing exercises jes boost ones energy levels.....I do it myself and I have noticed the great change in myself...I take a very high doze of tegretol.....Their website is www.Artofliving.Org check it out.......And u are always in my prayers...Jes have faith in "him" he has his own ways of doing things......Take care :d
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replied February 8th, 2009
i understand your son its hard to live with it
hi
i would advise to you to go and see another pedriatician.i am 23 years old and i had petit mal epilepsy when i was a kid.i took phenobarbital until i was 7. i still show signs of being epileptic especially when i drink beer and vodka heavily or when i am stressed.i have an iq of 160.i got a scholarship in med school.being epileptic doesnot mean you will end up stupid.have faith in your kid and tell your wife not to feel sad.just embrace the disease abd be cool about it.if he is not good at school it doesnot matter try to find out which field suits him best.may be he can be an artist.
my prayers are with you and the kid
good luck
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