Friday, April 29, 2011

Pointless Story Part III

If 4.5 million children were born in a year, maybe 1,500 of these children would develop Infantile Spasms (IS) in their first year of life. And maybe 1,200 of these children would have symptomatic IS in which an underlying condition would be identified, of which maybe 400 children would be diagnosed with a brain malformation. Only about 100 children with various forms of epilepsy including IS would have hemispherectomy surgery and of these children, 2 may die.

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?


  1. Every time we have seen Jacob since December, Anthony and I comment on how much he has changed post-surgery. He is so much more alive and he is amazing. I hope that every child with a medical history similar to his is lucky enough to have parents who will fight as hard for him as you have. Keep it up.
    Love, Auntie "Cake"

  2. You know I absolutely 100% agree!

    When I let myself think about all the time we wasted with drugs that were never going to work. Drugs that neuros...we all knew the odds of those stupid drugs working was slim to none. When I let myself think about how far he's come since surgery. And how much further he could be if we hadn't wasted that time...

    it makes me nauseous.

    I absolutely agree.

    Although I would take it step further. Trevy's brain malformation was undetectable with MRIs - no matter how strong they be.

    I DEEPLY PASSIONATELY believe ALL babies diagnosed with Infantile Spasms should be in the process of surgical evaluation from day one. Even those who respond well to ACTH initially. It should just be the protocol.


  3. Just came over from Danielle's blog. I 100% agree also. My daughter was dx with IS on May 10, 2006 and had a left subtotal hemi on May 29, 2009. For 3 years we tried 14 different medications/treatments. In which, NONE of them ever stopped her seizures. She was evaluated for surgery in December 2006 but everyone kept wanting us to wait. Once she became SF after surgery, her development was nothing short of amazing. I will always wonder how much further along she would be now if I would have fought harder. But it is really hard to fight harder to have HALF OF YOUR CHILD'S BRAIN REMOVED when all the doctors want to wait.

  4. I think doctors who want to make a toddler continue to suffer hundreds or thousands of seizures a day while they keep playing with dosages of drugs that haven't made any difference, should be made to wear a 'shock collar' for dogs - controlled by a seizure mommy - for a few weeks. I bet they'd think more about actually helping the child.

  5. Thank you all for commenting. Danielle, I totally agree. Elaine, I have followed Sophie's story from Danielle's link... nobody fights harder than a seizure mommy. And Wendi, most websites still describe hemispherectomy as a radical procedure only for children who have severe seizures, have failed multiple medications, and have experienced developmental regression. This was not Jacob in December 2010. Hopefully, the paradigm is shifting. If not, then what to do?