From the time Noah was born until he was around three months old I witnessed three seizures. Each time I was holding him and each time my heart stopped. They were small with the longest lasting just over one minute and was the horrible night the NG Tube was put into place. Each time this happened I would call his neurologist and also his pediatrician. However, seizures are common with the diagnosis of Agenesis of the Corpus Callosum (ACC) and they were short and pretty insignificant. His head would go back, his eyes would roll back, his arms would shake a little and then it would stop. We were told to keep an eye on it but to expect this as one of the symptoms of his ACC.
On April 17, 2012 we started to notice something different. It looked like a seizure but he was no longer shaking like he had previously. His head would go back, his eyes would roll back, but now he was starting to do a chewing motion with his mouth and then he would stretch his lips. His one arm would go up and down a little bit and some times he would arch his back a little bit. At first it happened one time, then as each day would pass it would go longer and more frequent.
The neurologist told us to give him this emergency drug called Diastat (Valium that goes into the rectum) if he has a seizure lasting longer than five minutes. Well, that day came much too quickly and I was crying as I had to administer this drug into my baby's bum the first time. Then the next day there was another five minute one but I was told not to use the drug more than twice a week.
Long story short, five weeks worth of these seizure looking episodes, two visits to the ER, two different trials on anti-seizures medications....and nothing was working. They got as long as 12 minutes and up to about 8 times a day. I knew there was something more to it and I was upset that nobody was asking to do another MRI or an EEG. So what does any parent do in times like this (or I should say SHOULD do). Put your foot down! Demand some tests! Call every single day and leave a message with the neurologist to be seen! That is what I did and finally it worked.
Now, my husband and I had taken a video of one of his episodes with our phones. We had showed the ER staff (all 20 of them), his pediatrician, his physical therapist, his occupational therapist, and his vision therapist. His endocrinologist even saw a live episode and NONE... I repeat...NONE of them had anything to say about it or that it looked out of the normal. (this is when I decided that doctors do not know much and you have to be your own child's doctor and do your own research). Our baby was pretty much lethargic every day, totally regressing in all aspects of development, and couldn't even smile anymore. We were heartbroken for the zillionth time.
Finally the day came where we were finally able to meet face to face with Noah's neurologist who we love but who is also extremely busy. We showed her the video and in a matter of two seconds she said "that is not seizures that is Infantile Spasms". Two seconds it took. That was all. Even after I had explained to her over the phone three times as well has her nurse and message person in very detailed explanation what his episodes looked like. (Lesson: take a video if you can and email it to them for viewing rather than telling them over the phone what you are witnessing).
At first the term Infantile Spasms sounds pretty harmless. Wrong! So very very wrong. Infantile Spasms are worse than seizures, are very very very harmful to the brain and development, and can even be catastrophic to those untreated in time. Noah went five whole weeks being treated for plain epilepsy rather than Infantile Spasms and so he endured five weeks worth of brain damaging spasms to his already suffering little brain. He was put of a very high dose of steroid called Prednisolone which killed his immune system, made him swell up like a balloon, and caused all other kinds of symptoms. However, the first day we went on the drug his spasms stopped for four straight days. Light was coming back into his eyes again, he smiled, and he finally had an appetite, and our baby was coming back to us. Then day five hit and the spasms started up again. What could be wrong now?!?
Here is four minutes worth of a 12 minute Infantile Spasm that Noah was having daily.it is also posted on Youtube at http://www.youtube.com/watch?v=yi9mxBUmNtQ
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