Food and Drug Administration: Study medication NNZ-2566 used in Rett Syndrome
My daughter, Chelsea Lauran Parris, age 27, has Rett Syndrome. She is a participant in the safety double blind study of NNZ-2566. This study is med vs placebo. She took a low dose of 35.5mg/kg twice a day. After her starting dose of 10mg/kg she went over 2 minutes at a time for over an hour without wringing her hands (which is a trait of Rett Syndrome). She became more attentive, used her right hand purposefully (which she has never done), started making babbling vocalizations, and her body became less rigid. She has always been severely constipated and that ended also with us being able to get a bowel regime going. She was on her medication for 14 days. We saw no negative side effects from her medication. 36 hours after going off her medication, her hand wringing resumed with great intensity. She became rigid again. Her babbling decreased. Her eye contact went back to the way it was before. I would like for the FDA to consider making NNZ available so my daughter and others with Rett Syndrome may start receiving it. We do not know, nor do the doctors or any members of the research team know if Chelsea had the med, NNZ or a placebo. I feel like she had the medication and not a placebo I would like for her to have the opportunity to take a larger dose and improve her quality of life. I am requesting that this medication trial be opened very quickly. That all Rett Syndrome females be given the opportunity to receive NNZ.
Open study medication NNZ-2566 used in Rett Syndrome
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