Sunday, August 20, 2006

Easing back into the real world...
We are slowly reemerging into the world outside our bubble. From the day Sophie started the ACTH treatment (which was May 11, 2006 - the day she turned 7 months old), we had to keep her somewhat isolated. As you know, we are now able to take her wherever we desire. Easier said than done. As some of you know, I am slightly (just slightly - hah!) germaphobic. Sophie, on the other hand, wants to touch everything with her hands AND MOUTH (yuck)! Oh, and she is so incredibly excited to see new people and new things. Leave her toys behind - those are boring. If someone even glances in her direction, she lights up. Her smiles can melt anyone's heart. She does this whole body smile. Her arms and legs kick out. Her head tilts back. Her eyes light up and she has this wide open mouth grin. It is so adorable. The only problem is - it is so inviting. So I keep my guard up, try not to let strangers get too close, and if they do, keep lots of antibacterial wipes handy. As the months go by and I am more confident that her immune system is stronger, then hopefully, I will be less paranoid.

Seizure update... She is still having them. Today was not a good day. I will be calling the doctor first thing tomorrow morning to discuss her medication level. She is currently on 105mg/day of Topamax. She started at 30mg/day and we have been increasing it by 15mg every week. She had about 60 seizures today compared to 10 seizures a day she was having. I believe she is teething, which I have heard can increase seizures. A lot of things can cause an increase in seizures or even cause a child who gained seizure control to start having seizures again, such as ear infections, the flu, teething, etc. Also, I have heard that an increase in medication can cause an increase in seizure until your body adjusts to that level of medication. The other day, I read an article that quoted a professor of neurology that said "All of our seizure medications are controlled poisons, all with significant side effects". With all that said, we will probably not know why her seizures increased today, but hopefully today was just a fluke.

1 comment:

Great Aunt Barb said...

It looks like Sophie had a great time!! I bet it was wonderful for all of you to have a real family outing. I just told Grandma Deb the other day that Sophie probably thinks she's entered a whole new world since she can finally get out and see all those new faces and new things. All those toys are nice....but there's nothing like exploring the real world... seeing new faces and new things!!

Love,

Barb