Ok i posted this on the yahoo group but i was wondering how many have children that have passed 3 or are healthy with this disease? Has anyone had a child that showed symptoms but got better even a little? Do you have your child on copper? What kind histidine, chloride, or sulfate? In your opinion which is better? Have any of your children had a muscle bioptsy? How are your children doing? If you lost a child is there a common reason of death among your children and other children on here? If so is there any preventative measures you think should be taken? I know have have Alot of question i have a almost13 month old with this disease started injections at 10 1/2 months I see a lot of progress already in him and i know its not just me. he is eating again trying with all his might to push up plays with his toys of course its very limited i just have a hard time getting him to track anything that doesnt interest him he will with baloons and light up toys and beads. His seizures have gotten weaker and less common. his hair actually is growing and looking softer and more normal as we go and since the injections started he is getting teeth 4 now and they keep coming. Is this something that always happens or is he maybe getting results? His head control is also getting better i can hold him by his shoulders only and his head can stay up for a limited time and his legs are unbelievably strond like he can be in a johnny jumper and bounce himself and stand. please let me know! God bless!
Corrine