My apologies for not posting sooner. I had intended to get this up by Tuesday, but here it is Thursday and, well, I guess two days late isn't too bad.
Anyway...
The update is thus: We have canceled the surgery(ies) for the strabismus (lazy eye) correction and hypospadias follow-up. We will re-schedule after the seizures (sz) are satisfactorily gone. As for the treatment of the sz, we began Monday night with a whole 25mg tab of the Topamax and will continue for ten full days doing a half tab in the morning and full tab in the evening. After that, we will increase to a full tab in both the am and pm for almost two weeks (because the 10 day mark falls on a weekend) before following up with Dr. Burris. So far, as best I can tell, Lucas is sleeping a bit more, but also, today seems to have had noticeably fewer sz! I did not witness any when we were up for his middle of the night meds and feeding and so far this morning (since just before 0600), he has not had an overwhelming slew of sz. ( I think he's had about 12 or 13 so far today, when by this time lately he'd already had over 20, maybe even 30.)
We'll continue to keep track of how many he has, but I feel really really hopeful that this dose increase is going to work and we won't have to mess with any other drugs (or their nasty side effects)! I'll keep you posted again soon.
Thank you for your prayers and support. I feel that our recent trials are so trivial compared to those of so many others in our region of late. All those effected by the flooding and the tornado that swept through the Boy Scout camp, our prayers are with you too.
Blessings to you all.
The DeSantis Fam
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