Any moms with a child with Retts?

oandmplus1

I know it's still too early for a diagnosis for us yet, and we do not have enough information to even be sure something is wrong with our DD, but my pedi mentioned some of the regression of her development are signs of Retts and that she is keeping it on her radar. We are starting EI, and going to watch her development and see how things go for now.

I am just wanting to hear your stories. How your child was diagnosed, what life is like for you? When did you notice delayed development or regression?

I just want to be prepared for anything, and have any information I may need if my DD in fact does have Retts so that I can help the best I can.

PnkBride

If she is only 6 months old, then yes, it would be too early to get any type of clinical diagnosis. They can do genetic testing to test for it though.

At 6 months, I'm curious as to what symptoms she is showing. Most girls with Rett syndrome don't really start the "RETT" stuff until after 1 year of age.

Here is a great website with lots of info: www.rettsyndrome.org

oandmplus1

Thank you. Her symptoms really could be anything or nothing at this point, but the doctor specifically mentioned this would be "on our radar", so I wanted to get more information on it.  She has stopped making eye contact most of the time unless you really get her to focus, and she never smiles at faces, only at sounds, tickling or toys. She also has stopped babbling like she used to and mostly only whines. She used to do these things but hasn't in about 2 months now.

Our pedi said it is too early to tell, but the "regression" is what bothers her. We are just kind of in a wait and see phase. I am all new to this so I am just trying to learn what I can.

Thanks for the website.