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Posted by Darla Strickland on October 12, 2000 at 10:31:01:

In Reply to: Re: Looking for answers, 3 yr. old having siezures posted by jim laughlin on August 09, 2000 at 12:14:19:

: : : : My 3 yr. old son started having siezures in Jan. 2000,
: : : : when i found him he was lying lifeless on the floor staring into space and he had thrown up, he was in this state for about 15 min. He threw up a few more times while in this state. The hospital admited him overnight and ran a cat scan, spinal tap, chest x-ray, and blood tests all which came back normal (of course no EEG!!) exactly 3 weeks later he had another one, this time when i picked him up he was stiff, and again threw up several times,he did not stay still though he limped up, eyes again were wide open and staring and he was again none responsive, He stayed in this state for over an hour until the hospital used medical intervention to bring him out of it. he was admited and stayed for 2 day's, this time they did an EEG and it showed alot of siezure activity. He was on dialantin but he was seen at Children's Hospital for another EEG a month later and it showed he was prone to siezures and they also changed his med. to tegretol
: : : : 3 times a day. They did not tell me what kind of siezures he is having and that is what i want to know.
: : : : I would like to find others who have children with siezures to talk to.
: : : : If anyone has had a similar experience and have a pretty good idea what kind of siezures he is having i would like any info.
: : : : Thanks
: : : : Sherri
: : : : burgan@nb.net
: : : Reply: Hi. I have 4 children. My last to children Nick, and Julia both started having the exact and I mean exact same seizures at the age of three! They only have mild EEg disturbance. They too have long seizures, Nick maxed at three hours. They have been on dilantin, tegretol, depekote, topomax. They only have seizures maybe once or twice a year. Both at developmentaly delayed by approximently two years. Please email me. I want to contact you. I would have to write many pages to discuss what we have found. But I think we figured it out. To make a long story short, Both kids do not metabolize proteins properly, their urinary amino acid levels were severely dificient, proper neurotransmitter level were at the severely deficient levels ie. no seizure control. Their fatty acid profiles showed severe aberations. this also implicates neurologic disorders. Call Dr. Patricia Kane, a biochemist in Millville New Jersy . Her company if Body Bio Center. Just call information that can give you the phone number. She is a specialist in epilepsy, autism and learning disabilites. She can peg the nutritional imbalance that is causing the abnormal EEg and seizures. Don;t waste time. We lost 5 years on Nicki until we found her. God Bless and good luck.

: : This is in response to a reply mentioning Dr. Patricia Kane at the Body Bio Center in Millville, NJ. I have been upable to get a phone number for her or her company. I would be very interested in contacting her regarding our son so has a history of seizures and has been on Depakote for several years now. Anymore information regarding her or her company would be greatly appreciated. Thanks.

: listen with skepticism to specialists who tell you that your kids will be fine and they will grow out of it. we lost our ten year old son in june to a siezure. the siezure was either so strong it kept his brain from getting oxygen or it made him not be able to move his head and he suffocated from being face down into his pillow and breathing his own carbon dioxide (much like a SIDS death). he had been to nuerology specialists at age 8 and they told us he would be fine and grow out of it. had a cat scan and sleep testing and they told us we had nothing to worry about. we think he had siezures maybe 1 or 2 times a month usually onl;y for a few minutes in the a.m. waking hours 6-7 a.m. i am not trying to scare anyone and i am no doctor but i want to share with others having this problem to beware.
I am so sorry to hear of the loss of your son. Sometimes when I get tired of all of the things my son has to deal with (seizures and learning problems, etc.) I just have to think that they have extra strong little spirits inside those bodies to be able to deal with all of the things they have to deal with and still be the sweet, happy little guys they are. Sometimes I think they're here to help us, more than we are to help them.
Your reply sounds so similar to my son Aaron. He usually has 1 to 2 seizures a month, in the early morning hours. Yesterday he had a light one at school, and didn't want to sleep by himself last night, so I let him sleep with me. All night long, his breathing was different, and that's how he usually is after a seizure when he falls asleep. He'll go for periods without taking a breath, and then take a big one, or snort and catch his breath. Was your son's breathing like that after seizures? I've never talked to anyone who's seizures sound so similar. We have gotten Aaron a hard foam pillow to sleep on, but maybe we should do away with a pillow altogether. Seriously, I have thought about this problem, because after a seizure, he sleeps so hard, and I've found him with his face down into the pillow, but he was in such a deep sleep, he wouldn't move his head to the side. I'm going to discuss it with my neuro. We have an appt. today.

Also if anyone is still interested in info about Dr. Patricia Kane, I got info over the web: www.bodybio.com. There's a place where you can type in all your info and they send you a packet in the mail. Just got it yesterday, and am definitely going to have the blood workup and fatty acid test done for my son. Has anyone had this done, and are you seeing any results (epilepsy or learning problems)? Thanks for any information!

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