I am so scared...his tests results came back posative.

Hi Beth, I am very sorry to hear about your son's diagnosis. I have not read very much about this syndrome. I just wanted to tell you that my son has been having severe clusters of tonic clonic seizures for the past 7 weeks. My son is almost 3 and the neurologist suspects that there is a possibility of Lennox gastaut syndrome. This condition seems to have a very similar outcome. So far my son seems "typical" developmentally and behaviourally. I really understand the constant fear and pain, along with worry that comes with watching your little baby go through all this. In addition I wanted to let you know that after my son's last cluster of seizures an epileptologist was on call that we had not yet seen. This doctor immediately started my son on Vitamin B6. I do not know if you have already investigated this, forgive me if you have. Apparently there is a very small percent of the population that suffers from a deficiency of Vitamin B6 that causes seizures. We have been put on a 2 week trial with the Vitamin (100 mg a day he weighs 34 lbs). The doctor actually wrote out a prescription for Pyridoxine (which is B6), but when you go to the pharmacy they give you the over the counter B6. I know it sounds silly, but this neurologist has seen 4 cases of it in her 12 years of practice. People that have the deficiency see a decrease in seizures within two weeks. It has given us a small grain of hope. I would love to be able to give someone else that hope. We are still to continue with regular meds, the vitamin is just an addition to his scheduled meds. From one mother to another, I am so sorry. I really feel for you, but please try not to loose hope. Your child is still young enough for things to possibly change and adjust in ways we don't yet know about. I never though that when this began I would ever witness my son have a tonic clonic seizure that lasted over 20 minutes. I was amazed that when my son became cognizant after he immediately asked me for some "Super Man Ice Cream"! Your boy is still in there. There is still hope that you can have a wonderful lovely life with him. Our prayers are with you. Please let me know how it goes. Tresa (mama bear)

Beth I am so sorry to hear about this. I wish that I could live closer so I could give you a big hug. Please know that we are praying and thinking of you all. If there is anything I can do for you please do not hesitate to call or e-mail me. I really am sorry...love you and AJ..i will talk to you soon. Kari