Mira had her first taste of Chinese food for dinner. We try and introduce new foods every so often (since she gets so tired of chicken + sweet potatoes - we can tell because she is turning orange) so tonight we pureed up everything we ordered. Sure tasted better than it looked.
We thought we were in the clear with the rash on her face, but it came back with a vengeance yesterday, so we have to go another round with her 'supercream' to knock it out for good. She also moved up to 10mg on the Lamictal on Wednesday (week 5) and so far so good.
I had heard through the I.S. grapevine that a new medication is in Phase II Clinical Trials (takes a long, long time for medications to reach this point) that is specifically designed for kids diagnosed with Infantile Spasms called Ganaxolone. The trial is currently recruiting patients, so this week I contacted the company and unfortunately, Mira does not qualify, due to her past AED medication history. If other parents are interested, the link is here: http://clinicaltrials.gov/ct/show/NCT00441896 Ganaxolone is manufactured by Marinus Pharmaceuticals which is here: http://www.marinuspharma.com.
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