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Old 02-12-2005, 06:22 PM   #1
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Question nothing is working

HELLO I'M VERY NEW TO THIS SITE MY 12 YEAR OLD DAUGHTER HAS GENERALIZED EPILEPSY AND NOTHING SEEMS TO BE HELPING HER THE DOCTORS HAVE MENTIONED THE KETOGENIC DIET HAS ANYONE HAD SUCCESS WITH THIS .

 
Old 02-13-2005, 08:30 AM   #2
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Re: nothing is working

Quote:
Originally Posted by chaz's mom
HELLO I'M VERY NEW TO THIS SITE MY 12 YEAR OLD DAUGHTER HAS GENERALIZED EPILEPSY AND NOTHING SEEMS TO BE HELPING HER THE DOCTORS HAVE MENTIONED THE KETOGENIC DIET HAS ANYONE HAD SUCCESS WITH THIS .

Hi,

My son who's 10 has generalized epilepsy also. Petit mal (abscence) and grand mal (tonic clonic) We just added another drug (Keppra) to his depakote. He was not having seizures (still a slightly abnormal EEG) on 1500 mgs of depakote but he became a zombie on it. We backed off on the depakote to 1250 mg per day. He was doing alot better (no seizures for over a month) but just had a grand mal this morning. Must have stayed up too late the last couple of nights and with the Keppra he's having a hard time getting to sleep. Even an hour past his regular bed time can set him off. Sigh. We haven't tried the keto diet yet. Seems very difficult to follow and carries with it some pretty serious side effects as well. The neuro wants us to increase his Keppra by another 250 mg in about a week. We'll see. I just don't know how this child is going to be able to get the 10-11 hours a night's sleep he requires not to have a seizure for the rest of his life.

Sorry I couldn't be much help for your regarding the diet but I'm here to listen. E can be a very frustrating and scary disease as I'm sure you well know.

Take Care,
Julie

 
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Old 02-13-2005, 01:28 PM   #3
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debvid HB User
Re: nothing is working

My daughter is 14, we have never tried the diet. I asked her neuro about it not too long ago. She asked would Bonnie stick to it? Bonnie said no. She then said it made no since to put her in the hospital and get her on the diet for her to then not follow it. She said it is very hard at this age for them to follow that diet, it does help if they follow it.

Julie, I posted a reply on the thread about Gage about the sleep issue. I don't know about Patrick but Bonnie will never get that much sleep during the week. Now, on the weekends she will stay in bed all day if I let her! I wish she could just catch up on her sleep on the weekends and it would help. Bonnie does good to get 5 hrs a night during the week! Her neuro said she realizes they are not going to get that much sleep with all the activities and her age. She tels Bonnie she has to be in bed by 11. Well we try! Bonnie was on Keppra for a very short time. She is on Lamictal and Trileptal, trying to get off of trileptal.

Debbie

 
Old 02-13-2005, 09:14 PM   #4
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Re: nothing is working

In my opinion, it is worth a try since there are people who have had great success with the diet. I also know of others who have come up with other dietary methods to decrease their seizures as adults. The ketogenic diet practiced daily without breaking the schedule may hold great promise, but it has to be tried to know. Phoebe

 
Old 02-14-2005, 06:49 PM   #5
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buliem HB User
Re: nothing is working

Hi Guys,

Don't know what we'll do with Patrick. He had another seizure last night. This is the first time he's had two big ones in one day. Fell out of bed, got up and we think fell down again. My husband came in and he was standing there with his hands in the air. Automatisms that neuro said. I'm confused because he has a diagnosis of generalized idiopathic seizures and it's my understanding that automatisms go with partial seizures. Any ideas?

At least I adverted another $1000 trip to the ER. The neuro wanted him to go because he was afraid he hit his head and had a concussion. Pat did want to sleep most of the morning away and was pretty out of it yesterday after the first. You would too after two grand mals. He did have a headache (again from the seizures I'm sure) but the neuro checked him out anyway just to be safe. Glad I didn't let him force me into another ER visit and a CTscan.

Upping the Keppra by another 250 mg. Neuro seems stumped. Says to stick with the plan as of now but it'll probably change. Meanwhile I've had a migraine all darn day. Started last night right after the second seizure. Stress/sympathy headache I guess. Thanks for reading all.

 
Old 03-02-2005, 11:58 AM   #6
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momsbrandi HB User
Re: nothing is working

My friend has a 5 year old son with epilepsy. Meds did not work for him. She has had him on the ketogenic diet for about a year now and they have had great success. She is very strict with his diet. Watches EVERYTHING he eats. He's now in pre-k and she brings his lunch to him everyday. He is used of the diet now. It's time consuming, but, it works.

 
Old 03-03-2005, 10:03 AM   #7
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Re: nothing is working

dont feel bad I was used like a guinea pig for 23 years till they found a medicine that would stop my seizures but the biggest help of all was prayer. i used to have them once a day to once a month it was unpredictable

Last edited by bputley; 03-03-2005 at 10:03 AM.

 
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