It goes without saying but, our family support this week and always is just amazing. I would not have made it through the week without the Grandparent's, Hannah and Riley's nursing staff who help to make our crazy life semi normal! And who are available to drop anything and everything "just in case" things don't go as planned.
Riley's Infantile Spasms are back. We're devastated. After staying on the ACTH longer then initially planned and going a few months without spasms or seizures we really thought the ACTH had done it's job and that we were in the clear.
This is not the case.
While trying to be positive about this new development I am reminding myself that the IS's are not as long or strong as they were before and they haven't been as frequent.
We did already up the dose of her Depakote a couple weeks ago and now I wonder if that was really necessary. While talking with Riley's neurologist yesterday and discussing the various options that we have in regards to what to do next I actually said I didn't want her to be a zombie. I hate that I have to even say that out loud.
Riley's seizure meds are heavy and sleep inducing. They would probably knock any of us out with 1/2 the dose that Riley gets. The less medications we can have Riley on the better. But increasing/decreasing and monitoring what is in her system takes time and unfortunately we don't have the "right" cocktail just yet.
I want Riley to experience life. I want Riley to enjoy our family time. I want the Infantile Spasms to go away.
We've declined to do another round of ACTH. The side effects were awful. Riley was not herself at all and is still recovering from the weight gain and hormonal changes she experienced.
I am waiting to hear back from the doctor. We discussed two different meds and he will be reviewing them with the doctor that is taking over Riley's case in June.
Looking at Riley and seeing her do so many new things recently makes it really hard to take this newest set back.
At a little over 2 years old Riley has been through too much. I'm trying to see this as just another bump in the road for Riley and our family.
So, here we go again. Praying we find something to keep the IS's away.
Dave, Megan, Logan, Mason and Courageous Riley!