To all of the families and children who came before Jacob, we thank you. Jacob is only 1 child. Our child.
Epilepsy surgery, particularly hemispherectomy surgery, seems to be a primitive measure. Even so, hemispherectomies performed today are more advanced than a decade ago - thanks to the children who came before Jacob and advances in diagnostic imaging. Perhaps when Jacob has grown to be a man, stem cell therapy will be available because of children like Jacob whose brain tissue was donated for epilepsy research.
I travel in small blog circles - infantile spasms and epilepsy surgery. I have been troubled by the stories of children who had been diagnosed with IS and had relapsed and from the number of drug trials that these children had endured before being considered for epilepsy surgery.
Jacob's epileptologist characterized Jacob's seizures as "relatively mild" and during the conference at which Boston would determine whether Jacob was a surgical candidate, there was discussion about proceeding with additional drug trials because Jacob had only been on phenobarbitol and depakote. However, the panel considered our wishes - to prevent seizures, however mild, and anti-seizure medication from impinging upon the development of the right hemisphere of his brain.
Jacob's neurosurgeon intimated that all roads would lead to epilepsy surgery whether we decided to proceed with additional drug trials or wait and see if Jacob's seizures became more severe. Although Jacob has significant developmental delays, he did not regress after he was "cured" of Infantile Spasms. He came back to us and we were unwilling to experience losing him ever again.
There is no cure for brain malformation however. The point of this seemingly pointless story? I unequivocally believe that every single 1 of the children who develop IS as a result of a brain malformation should be considered for epilepsy surgery upon diagnosis.
What are your thoughts?