I called her Neuro yesterday and we talked to eachother for a really long time about what to do and honestly, the girl has everyone stumped. Normally for IS you go right to the top notch drugs because you have a better chance of preserving cognative function, but is it affecting Dylan's cognative function? We don't know! It doesn't seem like it and from everything I have asked and he has told me we would definately know if it did. So do we put her through all that ACTH entails if it's not affecting her? With a 70% chance of success? Ahhhh!
So we are going to go with Topomax, combined with the B6 that she's already getting. Her does is extremely low to start off and then they get her to the optimum amount. Topomax has about a 30% success rate... one in three... I can go with that! I got the prescription filled this morning and the Pharmacist was so funny, they are the tiniest pills I have ever seen in my life... and he sat there for a half hour and quartered them for me! We were laughing about it, what a nice guy to do that for me!
Anyway, I am rescheduling the EEG for another week out, sometime the first week of August. If the Topomax doesn't work to make her EEG regular and stop the spasms we have a big decision to make. If we decide we aren't worried about the risk to her cognative function, the nomal course of IS is that they grow out of them, although most of the time they develop into another seizure disorder.
We went swimming at Kristen's a couple times since I posted last. We went on Sunday for the big family get together and boy, there were a lot of people there! LouAnn counted 43 people! It's was like a Rec Center pool! Everyone had a really good time. Dylan wasn't all about swimming, but I guess I can understand, talk about over stimulation! She was much happier in the pack and play. (Best. Purchase. Ever.)
We also went yesterday and we were planning on being there by ourselves but Garrison and Giselle joined us... even though Garrison spent most of the time trying to drown Giselle! Kristen came out and talked to us for a while too. It ended up being even more fun than I expected it to be. It's nice that they are so close and there's an open invite, if we are bored and need to play for an hour it's 5 minutes away!
Duncan is obsessed with Dylan's room now. I took all of the baby toys out of his room and put them in hers to kind of separate them so now he just spends all of his time in her room. It's very silly! Goo-ya! Goo-ya! Goo-ya! (That's Duncan speak for 'but her room is so fun!')
I forgot! Dylan has another bladder infection too! She had that one about 4 or 5 months ago that she didn't kick so they put her on some strong stuff. Then, her Ped decided to put her on a med that is a low dose daily antibiotic to prevent them for three months. We stopped that med about 3 weeks ago and sure enough! We thought about it Monday and I didn't call, but then I was strongly prompted to call late Tuesday night. I said her pee stunk a little the day before, but not so much today... and they kept asking what else and I don't have anything else to tell them! They act like I am crazy! No symptoms? How could I possibly know? "Look... I know she has one, just give me the meds okay?" I don't think that would fly. Boy, that 10 minutes waiting in the doctors office is looong, makes you think you're making everything up! Especially because she doesn't fever. Bummer though, not sure what they are going to do, maybe put her on that maintenance one all the time? I need to call back in a week or so. Poor little kid!
Twin day, daddy got them all dressed and ready for the day so mom could sleep in until 10! Yay! Go dad!
You wiggle it, he bites it!
And it's SUPER funny!
And really all Duncan cares about in the pool is the cars. It's hard to keep him *in* the pool with them though, after all... cars don't go in the water! Silly mom!
That BIG boy binki right to the left of her? Yea... not cutting it.
So Melisaa tried to get her to stop and smell the roses. (We went home VERY shortly after!)
No comments:
Post a Comment