I havent wrote in a while but we have found out through an epilepsy medical center from Austin's epileptologist that he has a Tumor on his brain and that it cant be removed or he would die on the table. We are very disappointed and sad but we are glad we found answers. We are cherishing every minute of every day. His seizures has decreased dramatically with the pheno and depakote. We are very excited about that but the meds are really messing with his everyday life. The make a wish foundation has granted him a wish to go meet spongebob in universal stuidios so we are looking foward to that soon. Please keep us in your prayers and I will keep you posted.
My heart truly goes out to you. I will keep your little boy in my prayers. I will be praying the hardest for you. You, as his mother will need all the strength the Lord can give. Don't forget to take care of yourself too. Please keep us posted.
Thank you for letting us know. I truly am sorry. I do wonder though if Gamma Knife would be an option since it is non-invasive. Did his neurosurgeon discuss this method? You mentioned an Epilepsy medical center. Did you mean a Comprehensive Epilepsy Center? It ask this since it can get confusing just who has what training etc. The Epileptologist will have a certificate on his wall saying he completed a Fellowship in Epilepsy or Neurophysiology. Without that, he is a general neurologist without the extra training. Just some food for thought. I would be interested in knowing what his neurosurgeon thinks about the Gamma Knife. Phoebe
Austin has a neurologist back here at home where we live but his epileptologist is at MCG medical center 3 hours away from us. He also has a neurologist and neurosurgeon there also. He also has a neurosurgeon about an hour away from home. Austin has alot of doctors. Because I have never settled for one opinion when it comes to his care. MCG is an comprehensive epilepsy medical center. Austins epileptologist went to Albert Einstein College and Duke Universtity and those are the best colleges around anywhere near our home town. They had considered gamma knife surgery but the tumor is a hyplothamic hameratoma tumor and it covers the left side and half of the right side of his brain. So we had a meeting with all the doctors at MCG and they said it was to risky to do it because his blood vessel that runs straight to his heart from his brain is right in the middle of the tumor. But we have faith that something will come available to help him. Any of you hear anything please let me know. I hope you all are doing well and thanks for all the input, prayers and info.