As my last post explained, Paige is finishing a month long course of a high-dose injection steroid to control her infantile spasms. According to her Epileptologist, the medicine should work in the first two weeks and the last two weeks are for weaning. We just finished up week three of the steroid and just had a 24 hour EEG to see it worked and we have the results….
After over a month of bad news and setbacks, we finally got a shred of hope! The EEG report showed that the ACTH (steroid) did stop the spasms and they should *fingers crossed* be at bay for a while. How long they will be under control is still a question – it could be 10 months or it could be 10 years. We don’t really know. But, at this very moment she is not having seizures and we are celebrating.
Paige was pretty out of it for a while and it was hard to watch. She gained about four pounds and got really swollen. Our normally smiley and cuddly baby was very irritable and uncomfortable and it broke my heart. Within the last few days her smile has come back and she is getting back to her normal schedule and routine. We are elated!
We know that Paige will be prone to many seizure disorders in her life due to her Lissencephaly but, as we said, we have to take the good with the bad and these past few days have been good. Her EEG’s will never be normal but her doctor said that Paige’s was the most normal looking one she’s ever seen for a kid with Liss. She also predicted that Paige might have a burst in development soon and, even though I’ve always believed that she will, it makes me more hopeful.
We’d like to thank everyone for their prayers and I thank God every day for taking care of her. And how about a shout out to science and medicine, too?! I’m always amazed at medical professionals and we thank them for taking such good care of us, especially Miss Paige.
*sigh* It’s good to breathe again…
“Good news is rare these days, and every glittering ounce of it should be cherished and hoarded and worshipped and fondled like a priceless diamond.” -Hunter S. Thompson