Hello everyone. I was wondering if anyone out there knew anything about retts syndrome. My daughter cayla is 19 months old and for the longest time we have believed her to be autistic, but today while i was researching the web as i do everyday I came across retts syndrome. It was very startling because there where a lot of her symptoms on that list. My daughter cannot crawl or walk,she has sever low muscle tone. She can sit without support. She has extremely small feet, which was a sign of retts. She wears a size 3 shoe and it isnt very tight. She also weird hand movements. She has always had that from day one. She has always rocked back and forth, and she rolls her eyes back, mostly when she becomes frustrated. She has very bad tantrums where she will bite her arms and scream. The only thing that calms her is spongebob the cartoon. Sounds silly I know but it works. I was wondering if anyone knew who i would go to for testing. She has had genetic testing done by her developmental ped. I put a call into him to see if her could test her, but have not received a response as of yet. I am so scared that it may be retts syndrome. It was bad enough to know your child has autism, but it would be far worse to hear Rett's syndrome as a diagnoses. Please if anyone knows anything write me back. Thank you Rochelle

Olny thing i have to add is..Retts kids usually have smaller heads.. then they are supposed to.. also the strange hand thing u mentioned... is it more like wringing??.. like as if she were wringing out a dish rag..?.. Retts kids have autistic behavors...i would wait to heard back from your dev. ped... good luck ... :wave:

Rhetts children also tend to gain their milestones "by the book", then seem to suddenly lose them.

Please consult with your Ped or a child Psychiatrist.

HUGS
Heather

hello there thanks for the replies. My developmental ped has returned my call now and we are in the process of getting the test scheduled. I am so scared that it is going to be retts. I think the thing that bothers me the most is her little feet. I have always thought they were way to little and that something was wrong. She doesnt do the hand wringing but she does the hand mouthing constantly. She is constantly pulling at her tongue and always has her hands in her mouth. She also can not bear weight in her legs and can only stay on her hands and knees for about 20 seconds. Thanks for the support. rochelle