Comments on: Mother Shares Her Story of Hope http://epilepsyoutreach.org/blogs/epilepsymoms/blog/2009/03/10/arlene-martell-shares-her-story/ A blog for moms of children with epilepsy Wed, 16 Sep 2009 20:25:29 -0700 hourly 1 http://wordpress.org/?v=3.1 By: Donna http://epilepsyoutreach.org/blogs/epilepsymoms/blog/2009/03/10/arlene-martell-shares-her-story/comment-page-1/#comment-32 Donna Wed, 02 Sep 2009 17:23:42 +0000 #comment-32 thank you for posting this....I have a 15 year old son who had petit mal seizures usually when running a temp or not feeling well from 18mos until 5 yrs then they stopped-(no meds). Last year at the end of Sept. my son began having long lasting granmal seizures. He also has autism but is primarily a nonspeaker. He has been GF/CF for many years and utilizing supplements a year prior to the seizure onset. We were forced to stop all supplementation in Feb for our rx costs for the seizure meds were running us over 1400.00 a month. My son's epilepsy has been out of control before and continues to be.We have tried many meds and currently he is on 4 plus B-6 (B-6 decreased the everyday frequency) yet still having seizures every 5-7 days. He has lost so much... right before the seizures began he was talking and making huge strides now it is hard for him to stay awake, drooling and often unable to contol motor movements. He has lost close to 30 lbs in 7 weeks and his urine is cloudy. The neuro and nephrologist both said to me not to worry for we have to get the seizures under control. I am soooo frusturated and truly wonder if the side effects of the medicine is not part of the problem. They looked at Lennox Gasteu syndrome and said it was possible but not a definitive fit. What they usually say to me is"this is a really bad seizure disorder and he can not keep having them".... I can deal with the autism but the epilepsy-it kicks my butt!!! I too feel like I am just watching him wash away from me and truly fear the long term outcome and mortality. We have not tried the Ketogenic diet-how does that work w/ GF/CF??? OBTW- did yousee that on the ARI website there are 2 scientists collecting data on individuals on the spectrum who have epilepsy? thank you for posting this….I have a 15 year old son who had petit mal seizures usually when running a temp or not feeling well from 18mos until 5 yrs then they stopped-(no meds). Last year at the end of Sept. my son began having long lasting granmal seizures. He also has autism but is primarily a nonspeaker. He has been GF/CF for many years and utilizing supplements a year prior to the seizure onset. We were forced to stop all supplementation in Feb for our rx costs for the seizure meds were running us over 1400.00 a month. My son’s epilepsy has been out of control before and continues to be.We have tried many meds and currently he is on 4 plus B-6 (B-6 decreased the everyday frequency) yet still having seizures every 5-7 days. He has lost so much… right before the seizures began he was talking and making huge strides now it is hard for him to stay awake, drooling and often unable to contol motor movements. He has lost close to 30 lbs in 7 weeks and his urine is cloudy. The neuro and nephrologist both said to me not to worry for we have to get the seizures under control. I am soooo frusturated and truly wonder if the side effects of the medicine is not part of the problem. They looked at Lennox Gasteu syndrome and said it was possible but not a definitive fit. What they usually say to me is”this is a really bad seizure disorder and he can not keep having them”….
I can deal with the autism but the epilepsy-it kicks my butt!!!

I too feel like I am just watching him wash away from me and truly fear the long term outcome and mortality.

We have not tried the Ketogenic diet-how does that work w/ GF/CF???

OBTW- did yousee that on the ARI website there are 2 scientists collecting data on individuals on the spectrum who have epilepsy?

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