Wednesday, September 24, 2008

Atul turns two on 30th of September and ...

...whew what an year. Atul was dx with IS at 6 months and has been on 7 medicines so far. His seizures have managed to overpower them all and my dream of seizure free days are getting grim. As of now he is on 3 medicines and still having more than 30 spasms a day. There has been no upside, he is still floppy, arches his back constantly and shows no interest in his surroundings. What I am concerned about though is wondering if he will ever be able to focus or learn new skills. I realize this is very much a waiting game.

The Infantile spasms group has been a huge support for me in this journey and they have helped me cope with the situation I am in. There have been plenty positive and negative stories in that group. I noticed that kids with DS and IS or kids with MSC and IS have recovered well as compared to the irreparable idiopathic cases like Atul. Every kid with IS is different. While some have responded positively recovering to an extent of near normal kids, others have departed to be one of the angels.
While Atul’s IS cause is still a mystery, I wish there was a way out for him in this vast ocean of IS. However excluding the numerous issues with him, his medicines keep him knocked out most of the day only to lighten up with occasional laughing seizures once in a while and I have begun to enjoy that laughter even if it meant another seizure type.
This was a difficult post for me again and this blog is a place for me to vent...


Stumped said...

Wish you would find that perfect medicine for him to stop the seizures.. Once they r controlled, he will be able to gain all the skills.. Have faith.
Love ya.