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James is official done with Sabril now. While we do think it helped with the infantile spasms, he is still having them. They just don’t seem as strong as they were a year ago.
Here is a video of the spasms that Stacy took a couple of days ago:
Here is a video from January, before he was diagnosed with infantile spasms:
We have been dealing with these spasms for almost a year now. The neurologist originally suspected infantile spasms back in December 2009 after Stacy described them to the neurologist. However, after doing an EEG a couple of days later, the neurologist did not think they were infantile spams, and wasn’t sure what they were. In February, Stacy showed the neurologist a video she took with her phone and the neurologist again thought they were infantile spasms and ordered another EEG. On February 11th, we got confirmation that James does indeed have infantile spasms.
We’ve tried the ACTH injections; we’ve tried other seizure meds; we just finished with Sabril. ACTH and Sabril are supposed to be the top treatments for infantile spasms. So why is he still having them? Is there something else going on that we (or the doctors) are missing? As Stacy said in the first video, we just want these to go away! It’s just very aggravating. We feel so helpless. We’ve got to find something to get rid of these damn spasms!
Please pray that we find something that works.
