MYOCLONICS GO AWAY!

Some of the jerks start off looking like "startles" or "falling" reactions. Kind of like when you lay a newborn on his/her back with no clothes on. They look like they are falling and there arms and legs fly up in the air. They throw their hands up as if they need to grab on to something. Well that's how Matthew's started out when he was one year old. The neuro didn't call them Myoclonic then, he called them something else I can't recall the name. He was put on 60 mg of topomax. It stopped them because it kept Matthew groggy and like a zombie.
HE started this six months ago: Any little noise would scare him so bad, he would jerk. Most of his was noticed when waking up in the morning or from a nap. You have to be really quiet when you first go to his bed to get him up. It's the least we can do for him considering his blindness. I thought that was why he was having the jerks because we were not letting him know we were coming or just touching him would scare him if we didn't say something to let him know we were close by.
Well, this turned into more jerks every morning, every time he woke up, even from his naps. Jerk after Jerk after Jerk. Sometimes as many as 50 in an hours time.
When he has the jerk, he looks up over his shoulder as if he was looking to see who was "plucking" him on his head. IF he's in his walker or standing up, his knees buckle and his head drops. He never loses consciousness and the doctor says they arn't hurting him but they make Matthew irratable.
Next he started having them when he was going to bed at night or going to sleep for a nap. Not as many when falling asleep but enough to keep him from going to sleep sometimes.
I did some research and found that diet has a lot to do with seizures. Some are even treated with a high fat no sugar diet. That got me to thinking. The same time we switched from infant formular to pediasure was about the time his jerks started.
Pediasure is loaded with sugar! He was on it about 4 mos before I realized the connection. I took him off the pediausure for two weeks. His jerks were less and less every day. We switched back to infant formular, added Polyvisol vitamin drops and one half tums with calcium to make up for some of the vitamins missing when I stopped the pediasure. The neuro also put him on Lamictal an he is totally weaned from the Topomax after about 4 months of slowly reducing it.
To confirm my experiment, I gave him a bottle of pediasure before nap time after he had been off of it for two weeks. When he woke up he had about 45 jerks. That told me it had something to do with the sugar.
The less sugar I give him the lesser the jerks. I took him off the pediasure before the full dosage of Lamictal was given so I am positive it was all the sugar in the pediasure.
We have switched back to the infant formular, as only a suppliment and he's doing much better.
If I could get him totally off the sugar, I believe he would be seizure free. That's what Im working on now. I use Splenda (made from sugar) in most of his food and drinks. His phenylbarbitol is loaded with sugar too but there's not any thing I can do about that.
Things like diet and sugar were never mentioned to me by his neuro. I wonder why? I'll be asking next time we go back.
I have learned to always try home rememdies before loading your child up on antibiotics or seizure medicines. Of course I had to learn the hard way. His croup virus is almost gone except for a little runny nose.
Well I am exhausted. We are heading to Shriners Hospital tomorrow for more botox shots. Maybe. Last time we were there they said his legs were not worse but not better either. I plan to ask them about casting.. Something else that could delay tendon release surgery as long as possible.
I am going to bed now. Good Night.