I am a mom of a 27 year old Rett Syndrome daughter. I can answer your questions.

Beverly - posted on 02/22/2015 ( 2 moms have responded )

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I am the mom of a 27 year old daughter with Rett's Syndrome. When Mallory was diagnosed at 2, the disorder was just being recognized here in the US. Most girls were misdiagnosed as Autistic. I had sooo many questions and I went through a period of deep depression.When would I lose her? Did I do something to cause this? Why my child? Today, we have come out the other side of the darkness of this disorder, and now I can honestly say, we are both happy again. Retts doesn't define who Mallory is or what her quality of life will be. Hopefully I can be a resource for moms, like I was, who have young children with this disorder and feel overwhelmed. I needed hope, and I can give that to them. I have been though it all and so has Mallory. We help ourselves when we share our experiences. I would love to help anyone who is going through this.

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K - posted on 09/29/2015

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Hi!

I know this post is a little older but I figured I'd give it a shot.

You're post hit me b/c I think I'm getting into a anxiety driven depression but I guess that is probably normal when talking about someone and something you love so much. I will let you know that before I start, I am going to start going to therapy soon to try and figure stuff out on how to try to handle my daughter's condition.

I know the internet is a valuable tool but it's also making me convinced that my daughter may have Rett's. I know you said that your daughter Mallory was diagnosed at 2. Did she develop normally or was there always something a little off or different about her?

I keep beating myself over the head on what my daughter potentially has.
She has a developmental pediatrician looking at her 11/2/15 and while I want to know what her issue is, I dont because I am so fearful.

She is one years old and she is in Early Intervention.

I know you are not a specialist in the disorder but it may be helpful to understand how your daughter behaved.

You see I always thought there was something different about my daughter.
She was miserable up until 9 months old when she was put on Prilosec then the constant whinining and crying stopped for the majority of the day. She reached all her milestones later. 10 months she sat up, 11 months started to crawl, and 12 months she pulls up for a short period of time. But the physical aspects are not all that I am concerned about.

It's mostly her social. She rarely makes eye contact, she goes to a child group and doesn't even acknowledge that anyone is around her, she rarely smiles and laughing is even rarer. She plays with toys but not always. She can only eat pureed foods except for the occasional cookie here and there. She stares into space and is in her own little world a lot. She doesn't hold onto things for long without dropping them. Her arms are always up like an airplane. She has been lately holding her hands together... not excessively but more and more.

I know some of these things may seem like normal baby behavior but to know her you know something is just not right. I first thought autism or aspergers but now that I see that Retts affects mostly girls, I am so petrified.

I know this is a lot but i'd be appreciative of when you knew and what she was like.

Thank you.

Kinda - posted on 02/24/2015

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Each state should have a Rett Syndrome contact. From what I understand, they contact other parents of Rett children. There is limited information in some states so working with your state representative and the website can help get the word out to new parents of a Rett child. Bless you! A Rett child is incredibly special, just like their parents.

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