tag:blogger.com,1999:blog-5680783898929117118.post6642829480990111240..comments2023-10-03T21:08:50.028-05:00Comments on Miss Mira: A Non-Stop WeekUnknownnoreply@blogger.comBlogger1125tag:blogger.com,1999:blog-5680783898929117118.post-81655478984343087082007-12-28T10:01:00.000-06:002007-12-28T10:01:00.000-06:00Hi Marc: I saw your message from ClubRett. I have ...Hi Marc: I saw your message from ClubRett. I have a sooon to be 4 yo who I too thought would get a postivie Rett diagnosis...but no. SHe doesn't have seizures so we didn't test for CDKL5.<BR/><BR/>What we have been testing for is other metabolic disorders; one that mentions "hand behaviors" is Congenital disorders of Glycosylation (www.cdgs.org) but more likely for my daughter is Mitochondrial dysfunction (www.umdf.org)<BR/>Also there's a online group (of frustrated) but VERY supportive parents in "undiagnosed" stage of life. Please join us there-www.undiagnosed-usa.org<BR/>Kelly-Ann in Minnesota<BR/>www.caringbridge.com/visit/linaeandgrantAnonymousnoreply@blogger.com