Hi Lori,
Welcome to the group! It must be very difficult to watch your precious little
one suffer this way. Even more challenging is the fact that he is not yet old
enough to communicate to you how he is feeling, so you must be very vigilant
over his care.
One thing I learned from my experience with anti-seizure medications is that
they can severely deplete vitamin stores, especially the B vitamin group,
including Folic acid and Biotin. Will your child's doctor work with you to
prescribe or administer doses of these vitamins to offset the effects of the
medications?
Another thing that I have learned is that food allergies or sensitivities can
play a part in seizure activity. Two major triggers for me are wheat and dairy
products. I can tolerate goat milk just fine, but cows milk does not settle
well with me. I also struggled with soy milk, and began to use almond milk for
baking, etc. In addition, certain vegetables, particularly the "night-shade"
varieties, can produce seizures for me. It has been difficult, but I am
learning to stay away from tomatoes, eggplant, beets/turnips, and peppers. When
I first started this approach, I began by eliminating one food at a time to see
if there was a difference. Even if it didn't hinder my seizures, I stopped
using certain foods if they caused indigestion, a runny nose, or general
malaise. Over time, I'm learning which foods specifically initiate a
neurological response.
A book by Patricia A. Murphy, called Treating Epilepsy Naturally, may give you
some good ideas. I know that it really helped me.
Best wishes, welcome again - and keep us posted on your progress!
Carrol
pl9071@... wrote: Hi
I'm also knew, and I agree I thought this would be an active group. My son
who is 3 1/2 has myoclonic seizures along with myoclonic sleep. He started
having seizures when he was 9 months old. He has a rare chromosome disorder
which gives him these seizures. He has severe low muscle tone, severe
developmental delays. He was started on klonopin at 9 months old, then as he
was growing and teething he started having different forms of seizures so
they added tegeratol. I must say when he was on it he had the best
developmental growth, I don't know what happen but as he was turning 2 he
started having fright seizures and they took him off the tegeratol and put
him on depakote. I must say the depakote does control his seizures for the
most but he lost what little speech he had. He is in preschool m-f he gets
pt, ot, sp, mt every day. He is getting back to where he was but it is coming
very slow. He doesn't walk or talk but he is beautiful and loves to cuddle
and give kisses.
Thanks for listening.
Take Care
Lori


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