Way Too Many Spasms

Gracie had an extremely restless night. She had many spasms throughout the night and was constantly moving. She awoke to more of the same. We had more today than we have for a long time and many were stronger than what we have been seeing. She was sitting on the floor when one hit and it was so strong it knocked her over. This prompted a call to our neurologist. I'm not sure if I've mentioned it before, but we LOVE our neurologist, she truly is great. We believe that the Vigabatrin is not working, however since we aren't at the full dose yet, we upped Gracie to full dose tonight and will continue through the weekend. If we don't see any improvement by Monday, we will move on to Plan C. We aren't sure what Plan C is quite yet. There are a few things our neurologist has to check out before Plan C is decided. She just came back from a medical conference where there was much discussion and presentation about infantile spasms. In the UK they are using large doses of prednisone with success. We may try this, but Gracie can't be on ACTH to start this and she still has injections to ween her off until January 2nd. There is a chance that the prednisone could replace the ACTH, since it is a steroid. Our neurologist will be touching base with Endocrinology (Auntie Sheila, could you please get your endocrinologists on this!) to see if this is a possibility. The other possibility is the Ketogenic Diet (75% fat, 25% protein/carbs) with a 24 hour fast for starters that is monitored in the hospital as it can be very stressful for little ones not to eat for 24 hours. We expect that Gracie will be pretty zoned this weekend on the full dose of Vigabatrin.

We also had a weight check, blood pressure check, and blood draws tonight. She didn't even cry for the blood draw, she put her thumb in her mouth and just winced through it. Same for her injection this evening...didn't cry, didn't need to be consoled afterward. I think she is getting used to all of this. Her strength just amazes me.

We were at Baldwin this evening and a nurse I hadn't ever seen before came up and asked me if this was Gracie. When I said it was she explained who she was and told me that Gracie was being prayed for on her prayer chain. It amazes me how many people are praying for our little cherub. I can't tell you enough how much we appreciate the prayers.

Love,
Lisa, Jeff, and Gracie Gumdrop