[nevusmom]

Hi all!

It has been a while since I posted about Megan's progress.  It has been...interesting.  She had 2 seizures last week, but she was also under the weather and incredibly tired due to the illness keeping her awake.  There does seem to be a relationship between how tired Megan is and seizure frequency.  At any rate, since I last posted, she has had 3 seizures.

What is really interesting is that on several occassions, she looked like she was heading into a seizure, and then it just stopped.  Kind of like almost sneezing?  We have upped the amount of ambrotose we are giving her...we were giving her half the adult amount daily, but are now giving her the full dosage.  We are keeping the other products at half the adult dosage. My thought is whatever her body doesn't use, it will simply excrete.  Any thoughts on this?

Kathy S.

[Barry]

My daughter has been taking ambatose and glcyo bears for the last two years. In addition, she has been on a diet of no nitrates, white sugar, white flour, casein found in milk and red dye number 40.  We found that if she did not have any of these seizure triggers, she would be seizure free.  However, we were not able to eliminate her seizures totally, she would still have one about every month or so.  We also went to Neurotherapy Center of Dallas and had neurotherapy done.  By training her brain waves, we seem to have eliminated or nearly eliminated her seizures.  Since we started the program in May, our daughter has had only a slight seizure,( after a soccer game, when she was exhausted, another seizure trigger) during the past 7 months.  I think the glyco nutrients helped, but the neurotherapy really helped.  A combination of treatments seemed to help.  Thank you for all the great information in this site!

[Karen W.]

I know very little about these therapys but congratulations on the success thus far, it sounds like a drastic improvement.. I am very happy that your combined treatments have helped! It is nice to here good things like that! Thanks for posting and good wishes for continued success!

[Barry]

 []Thanks Karen.  I have more information on seizures and alternatives but did not want to go into detail because this site is for gyclonutrients...I'm a newbie and did not want to violate any rules.  Our pediatric neurologist who introduced us to glyconutrients left his practise to go into teaching so I'm looking for assistance from this site on how to use the glyconutrients to continue to support our daughter.  Based upon what I've read thus far we'll keep her on a regular dosage.  Right now she takes 1 teaspoon twice a day of ambratose; isotonix multivitamin (has probiotic); and 200 carbatrol in AM and 300 at night.  If she continues to be seizure free by the summer we will start taking her off the carbatrol then.

[nevusmom]

Hi all!

It has been a while since I last posted.  Where has time gone?  At any rate, we finally had to start Megan on Trileptal to control her seizures.  They were starting to occur more and more frequently, even with the upped dosage of the ambrotose.  We started her this past Monday on the Trileptal, but will keep giving her the ambrotose until April.  Megan's neurologist suggested taking her off the ambrotose at that point to see if it makes any difference or not.  If she remains seizure-free on just the Trileptal, we will probably just use it and quit paying for the ambrotose.  Ah well.  We tried.  Another avenue we MIGHT try is the "gluten-free" diet...is there a forum for that? 

Kathy S.

[Greg Smith]

Thank you for the update on your daughter. I'm sorry to hear that her seizures have not been brought under control by taking the "glyconutrients". I'm also not all that surprised. Here's hoping you folks find something that really works for her!

 Greg Smith