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9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks
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**SaucySarie**
You asked if Linc was crawling. The answer is not really. He gets up in 4-point and rocks. He has been doing this since he was 6 months old (when the IS returned). He usually just skoots backward even though he is trying to go forwards. We have been pretty lucky that he hasn't experienced true regression while having the IS. So far it is only like everything is put on hold, and he doesn't really learn a lot more.
9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wksThis discussion has been closed.
Re: **SaucySarie**
Well, at least he can get up there!!! Anna can only get up into 4 point for a split second and she shoots out of it. LOL. My girlies were so close to sitting when they got IS and they lost everything
Only now is Anna close to sitting and crawling and she's been SF since August!
How are things going with the IS? Any other meds working for him? Ayva only became SF after a VERY high dose of ACTH, and it didn't come w/o consequences
Just curious, hope all is well!
I have been following your progress on your blog. Is Ayva tapering the ACTH yet? Is she remaining seizure-free? We had some sucky side effects while Linc was on the ACTH as well. He was a total bear, and slept all of the time, cried from hunger when he was awake, had really high BP and gained about 5lb in 3 weeks. It was crazy. What kind of side-effects is Ayva having?
We had a 4-day video EEG last week, and it appears that the Topamax has controlled the IS for now. Although he is still having focal seizures several times a day...and these can be a trigger for the IS returning. We are trying to increase the Topamax to control the focal seizures. We are having some side effects of the Topamax...total appetite loss. Did you expereince this with Anna? If so, how did you get around it? Did it go away with time? I am having a really hard time getting Linc interested in eating, let alone doing any type of self-feeding. I am planning on talking to the neuro and our OT about this.
Ayva isn't going to start weaning ACTH until May 12th (which is her next neuro appt.) and I *hope* that she is still seizure free. I am analyzing every little movement she makes and freaking myself out about it
For Ayva she can't sleep and is crying all the time and has a high BP. She is gaining some crazy weight though!
As for the Topamax, Anna and Ayva are both on it. For them, they never really had any side effects from it. They maybe were a little less hungry for a few days, but I think though from the IS board that I frequent, others have said the side effect of loss of appetite went away within a few weeks. I just fed them whatever they would eat, even if it meant pudding and fruit as a meal. Any calories were better than no calories, kwim? And only now that she has been seizure free for a while, and starting to gain back her milestones, is she even remotly interested in self-feeding- although she does have a visual problem also and that could have been a factor.
I'm glad to hear the Topamax is helping the IS. For Anna, it went away and has continued to stay away with Topamax alone. I hope the increase can also tackle the focal seizures. It would be great if it could kill two birds with one stone! Good luck with everything, and I will keep you and Linc in my thoughts!!