Jacob's Infantile Spasms
A hopeful story
This is a story about our son, Jacob, who was diagnosed with Infantile Spasms when he was six months old. It is a story with a good ending-and I am creating this page so that parents can see that, despite the horrible odds, happy endings do sometimes happen for families dealing with this terrible condition.
Today, Jacob is almost two. He is a completely normal child. He will be attending pre-school in the Fall. He runs and laughs and plays and builds blocks and shouts the name of everything he sees. When he is around other children his age, he is on a par with them developmentally. The pediatric neurologist has told us, without a doubt, that the horror show of I.S. is over for our child. Jacob has not been damaged, and from here on in he is at no greater risk for any kind of neurological problem than any other child.
We first noticed Jacob's spasms when he was alittle over five months old. Our pediatrician, who was affiliated with one of the best hospitals in New York City, kept poo-pooing my concern, not really listening to me, and finally I overrode her (after only a couple of weeks) and insisted that she refer us to a pediatric neurologist. Jacob was having spasms in which his arms and legs stiffened, and his eyes rolled back in his head. They were lasting for thirty or forty seconds, and happening a half-dozen times a day or more. When the pediatric neurologist examined Jacob, he wasn't initially worried, but then Jacob had an episode right there on the examining table, and everything changed. An EEG was ordered for that afternoon, and the diagnosis of I.S. was made. It was something we had never heard of before. Jacob was put on Vigabatrin that very night. The doctor sent us to a family across town who had a child on Vigabitrin, and they lent us several sachets of medication until we were able to have the drug FedExed to us from a pharmacy in Canada.
Within a day of being on the Vigabatrin-one sachet divided into four doses, given at equal intervals throughout the day-Jacob was already responding. The seizures lessened until they were almost undetectable. But one additional dose was required, so that we were medicating him five times a day, before he was finally and completely seizure free. It took about a week to find the exact right dosage. In the meantime, he had an MRI, and a complete blood work-up, all of which showed no underlying problem. So the diagnosis, for Jacob, was ultimately of Cryptogenic Infantile Spasms. A root cause was never determined. We do not know why he got sick-and we do not know why he got better. He was on the medication for eight months, and then after a normal EEG, was weaned slowly off the Vigabatrin. He has now been off the medicine for eight months.
His development was a bit slowed down by the Vigabatrin, which
does have some sedating effects. He walked at fifteen months,
which was at the slow end of the normal range. But the gap has
pretty much closed now between Jacob and other toddlers. You
would never know, looking at him, that anything was ever direly
wrong with this beautiful, curious, intelligent and active toddler.
The night that Jacob was diagnosed, I went online and typed "Infantile Spasms" into a search engine. What came up was just terrifying and awful. It was a disease that was very hard to understand or make sense of, and it seemed that there wasn't a single story, in any of the anguished stories written by parents of babies with I.S., that turned out just fine. So we are creating this page in the hopes that parents who are blindly searching for the possibility of a happy ending will stumble across this page and see that-although exceedingly rare and lucky-it is possible to have the words "Infantile Spasms" leveled at your child and go through that long dark tunnel and have things turn out well in the end. There were many factors, most of them out of our control, that contributed to Jacob's recovery. Early diagnosis was essential. Without it, he would not be the boy he is today. And every day I am grateful for Vigabatrin, which was a miracle drug for us. We were lucky to have been living in New York City, and to have received care from a pediatric neurologist who had experience with I.S., and had even had a prior I.S. patient who was now a healthy and thriving seven-year-old boy. The neurologist gave me hope from day one, that Jacob would be a "save". It was hard to believe him, in the face of all the grim statistics. But it turned out to be true.
We will never be the same, having gone through such a profoundly close call with our beloved child. But we are immensely thankful, and I hope that these words give some bleary-eyed parent out there, surfing the Internet looking for answers in the middle of the night, a little bit of hope.
Please feel free to email me or my husband if you have any questions about I.S. that we might be able to help with. The email address is: djs17@columbia.edu.
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