In addition to Charlie's infantile spasms she has partial seizures. People live with partial seizures every day, they aren't developmentally detrimental the way the spasms are. C has sub clinical (meaning we can't see them) and clinical (we can see them) partial seizures. Lately, we have noticed more clinical partial seizures then we have in the past. When she has these her eyes blink pretty rapidly and her entire body trembles.
Wednesday morning Charlie Claire had 7 seizures in one hour and then passed the heck out...seizures take a lot out of you. We called the neuro's office and her neuro really doesn't want to add any more meds to the mix right now and would like to just stay where we are until surgery. His nurse told me that if C is drowsy this can trigger the partial seizures. They also sent us to get blood work done to check Charlie's phenobarb level because it could potentially be too high, they may need to decrease her dose. C was such a little rock star at the lab...she didn't flinch or shed a single tear. We do have to give Miss Sandra some credit, she is by far the best phlebotomist we have come across! The nurse also said the increase dose of the Sabril should help with some of the partial seizure activity.
Today C has had the most spasms that she has had since starting the Sabirl so we aren't super confident that the dose increase is going to work but tomorrow is another day so we just need to see what that brings.
On a brighter note...we are super blessed...the Sabril was going to cost us $250-$300 a month but we qualified for copay assistance and the medication is free up until $1300! After the (successful!) surgery, C will be tapered off the Sabril so we hopefully won't have to worry about hitting that $1300 limit.
Even with all of this craziness going on in Charlie Claire's little brain she is impressing us every day with her determination and development. Here is a picture of what we worked on the other day with Miss Wendy and C practicing it today! She has the whole concept down pat AND she is using BOTH hands! ps - if you look real close you can check out her little baby mohawk! :)
Please keep the thoughts and prayers coming...!
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