I am the mom of a 2 year old who has just been diagnosed with AGS. (The blood work came back neg., but the Dr. said he was diagnosing Ben with clinical AGS.) Ben has seizures at least 3 times a month (his bigger ones - lasting up to 2 hours each). The smaller ones are lasting 5-30 seconds each, and he gets about 10-40 a day of these. Does anyone know if there is a chance he will out grow these seizures? Thanks in advance.

Benjamin had Botox injections three times. The first two times, he was okay and it helped for about 4-6 months, but then wore off. The third time, Ben had a neuro-immunological reaction that he almost died from. He went limp, had a fever, and it looked like he had encephalitis. It took months for him to move again. 3 He permanently lost most of his vision from this incident. I have been told that this has also happened to other AGS kids. I would never recommend Botox for any AGS child. If you look in the literature, children have died from Botox injections, particularly severely impaired children. It might be fine once or twice for your child, but how do you know which time it might cause this reaction? It only helps for a few months anyway. Be very aware of this possible side effect before you do it on your child.

dear Mustafa
Thanks for the information and tell you that on May 8 applied toxin Camilla and that physicians consider it to be very good. Camila walks with a walker and they think they will do better with the toxin in his leg.

Thank you very much again!!

Besos y abrazos, Camila y Familia

Dear Juana,
we have done also on our son Sevin the injection of Botox and I know many families who do Botox injection .

We have see for maybe a few months improvements. But later
the effect goes back. But we have seen no side-effects or any contraindication.

From my point of view you can try it on Camila.

My best wishes
Mustafa

Hi I'm the Mom Camila Rios, 11 years Diagnosed with AGS. Camila gotten to bilateral hamstring surgery and after 8 months the doctors want to inject toxin botobulimica in the right leg. I ask, is there Any contraindication for Children with AGS? Please ask if You have information I do get.

Thank you very much, Camila Rios and Family