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Old 12-09-2002, 07:20 PM   #1
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Post epilepsy and diet

Hi Eneryone
I am brand new to the board. I have a son who began having seizures at 2 and is now 3 1/2. He is on no meds because we found the causal relationship with his diet. He is sensitive to corn, wheat, dairy, almonds and gluten in general. Occassionally he has seizures that I can't blame on diet but they occur in the morning or after eating. I have wondered about the blood sugar thing. He actually gets a ketosis or sweet/sour smell about him during these times and he also has difficulty with bowel movements-not constipated but requires a lot of effort with a lot of spaced in between. Our Drs say there is no link with diet. He had one kernal of popcorn and had seizures for 4-5days. Now he is fine. Has Anyone read any research on this or talked to GI specialists?
Thanks,
Christine

 
Old 12-10-2002, 06:21 AM   #2
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Welcome, What type of seizures has your son been diagnosed with? When you say he had seizures for 4-5 days do you mean one per day or continuous seizures. I also tried the diet thing. It cut my daughter's seizures from once a week to once a month. See my previous posting entitled "See If This Helps". However, I have since learned that she was misdiagnosed. Went to an epileptologist and he told me she has a brain tumor. Just getting started on this so don't know much about that right now. However, I'm glad I altered her diet - basically put her on a low carb diet with no grains or dairy - as it substantially reduced the frequency of her seizures, thus I feel it will require less meds to help to help her. I did finally put her on the meds and am now, with my hindsight, wishing I had from the start. She had a very bad reaction to carbatrol and the docs wouldn't listen to me. It scared me from the meds and the docs. I really like the epi. that she's seeing now. Please reply and let us know how he is doing. I think sometimes they can have little things they can't describe very well. For instance, my daughter had rumbly feelings in her tummy that never went away until she started the meds. Feel now those were small seizures or auras. lazoo

 
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Old 12-10-2002, 07:21 AM   #3
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My son was diagnosed with benign rolandic epilesy with opercular status which was diagnosed using only an veeg and cat scan. It happened while visiting BC Canada and we were in Childrens Hospital there. He started with slight lip twitching in March. Then in late May/June, he had a seizure-he was foaming at the mouth and coul not speak and had a stare-look in his eyes lasting for 5 min then he slept. Finally in June he began having these things plus a feeling of toe pinching. Basically he was in a state of constant low level seizure and it would spike to a higher level, occassionally involing his arm or foot. This went on for a week while we tried to get treatment for him (no doctors in BC Canada) The doc wanted to put him on an addictive experimental drug only available in Canada. While we thought about it I had a feeling it was his diet. He was living off of french toast with imitation corn syrup, chicken nuggets and french fries.
We were staying in hotels and he wouldn't touch anything else. I immediately put him on an elimination diet and he stopped seizing. At our follow up, the doc said we were in denial and could not be right about this. We came back to NJ in May and saw a neurologist. He said he thought the diagnosis is wrong and ordered lots of tests. Now we are waiting for health insurance. He also had residual sppech articulation problems but these have mostly resolved too. Now he has seizures once every month or so. Usually they are small but reoccur throughout the day visibly 3-4x and for the next 3-4 days. Each day has less and less. He is also completely aware through them. Lazoo thanks for the other posts- they are a starting point for me.

 
Old 12-10-2002, 08:23 AM   #4
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I am new to dealing with this in humans but I have dealt with it in dogs quite extensivly over the past 10 years. I know for a fact that diet can be a contributing factor in the onset of seizures. It seems to be fairly well accepted that stress can contribute and an allergic reaction to food is very stressful.
For the dogs that I have dealt with Corn, soy, and thyriod have been major factors requireing monitoring.
I have had a dog whose seizures were under control start seizureing again and have called the dogfood manufacture and been told that they had changed their formula to include soy or corn.
Surprisingly the vetinarian community is much more open to researching these links.

 
Old 12-10-2002, 08:38 AM   #5
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Did you have the tests repeated in NJ or are you waiting for the health ins to do it? Do you remember the name of that drug in Canada? Does he eat any green vegetables or take vitamins?

 
Old 12-10-2002, 08:41 AM   #6
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Funny you say thyroid. I have wondered so much about that. My daughter has always registered a very low body temp 97.0 - which I know the body regulates body temp. Also with a low body temp, I know the body's resistance is lower and things like cancer can get a hold. Wish they had more answers.

 
Old 12-10-2002, 11:03 AM   #7
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We are waiting for our insurance to kick in because the tests are so expensive. I will say, to the doctors credit, he did order many blood tests to rule out GI disorders (even though he said there was nothing in the lit to support it). The only thing that also contributes is stress. We have moved 2x and with each time, we see an onset of more seizures or a higher level of sensitivity. But his being very upset about something would never be the cause of a seizure alone. Also, we switched to almond butter due to common peanut allergies. He ate it everyday and after a few monthes he was very allergic to almonds-consistent with the food allergy literature about overloading on one food. I wonder if it is something like celiac. I once did physical therapy with a woman who went undiagnosed for years. She was all over the country seeing specialists and finally ended up in a coma. The disease forced her body to basically eat her brain. She took years in rehab to walk, talk and function again. There must be other diseases out there that can effect the body as much as gluten intolerance.
A note about temperature-when he is in the seizure mode and is having the difficult bowel movements as well, he complains constantly that he is hot. Last night he said he felt so hot that he was having seizures. So at 3years old, he associates hotness with them. But he doesn't have an internal fever.

 
Old 12-10-2002, 11:05 AM   #8
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Sorry.
The drug was ospolot.

Is there much scientific literature about food allergies causing epilepsy?


 
Old 12-10-2002, 11:11 AM   #9
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He doesn't eat green veggies. I go back and forth on vitamins because some seem to set him off. But, we have started him on Superfood a mix of bluegreen algae. seaweed, wheatgrass etc and he went for the longest time ever without seizures. He even had a bite of wheat 2x and spelt pretzels. That is when I gave him the popcorn kernal. To test the allergy and boy did he have it. I don't know about artificial stuff. Our family, except for the time when we were in hotels for 8 weeks, eats well. Organic, mostly vegetarian.

 
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