Thursday, November 24, 2005

1st Month

Cameran Alyssa was dx with Infantile Spasms on August 16, 2005 at 6 months of age. She was ahead of schedule and was crawling, pulling to a stand, laughing and babbling up a storm. Then the seizures took over and she lost the ability to babble, smile and laugh. Things we held dearly! Cameran was doing well even though she was having 158 head drops a day and having as many as 75 head drops right in a row but she started losing things she had already accomplished. After 2 weeks of being dx we just noticed one day she wouldn't respond to her name anymore then she stopped laughing and babbling. We could barely even get a smile out of her. These pictures were taken just 3 weeks before this all started. Here she was such a happy baby. We were so glad to have captured these photos of her before IS started. The Zonegran didn't kick in for about 2 weeks before we started seeing a difference. She had her vaccinations the week after being dx and they seemed to agitate it even more. On September 12, 2005 she had another EEG where it was still showing hypsarrythmia. These are especially hard on Cameran as they ask her to be sleep deprived. Hard to do when you have a 45 minute car drive. But she was great although her hair was quite a mess afterwards. It took 4 hair washings to get all that glue out. To this date she is still having 20-65 head drops a day. She usually has 4-5 clusters a day ranging from 5-30 head drops in a row. The Zonegran keeps her in a daze and she doesn't play she will just crawl around in circles and pull up on the sofa and stare at the walls. Brother is having a hard time understanding why she doesn't play anymore but loves her just the same!

Cameran will be going for her 1st MRI Sunday, October 2, 2005. We will see then if there are any problems seen there. Cameran's seizures seem to increase more and more everyday. It's strange but once they up her meds we will see the seizures go down for a couple of days. Then a few days later they will start to climb back where they were. Some call this the "Honeymoon Effect"!

1 comment:

Miss Bad Penny said...

I am sorry to hear about the problems that your baby is having. My niece had suffered from an epileptic seizure since she was only several months old too. She has been taking medication, less and less dose every year, for her seizure since then. I heard from her mom that her seizure has been under control since she was three. And now?? She is a very healthy and happy 10-year-old!! It's gonna be alright, just give it some time.

By the way, the pic that your little angel was happily sucking on her thumb and sitting next to a big seashell?? LOVELY!!