[DragonsMom]

27 month old, not walking yet but cruising. Not talking and barely communicating / interacting. Very content. Loves the water. Eating / feeding issues. Complete lack of any instinctual behavior since birth. Had MRI with 'normal' result. Had DNA chromosome test with 'normal result'. Has glasses. Very clumsy. No anxieties. Very tiny & under weight.

I will explain in more detail in another post some of the things that we have been through. For the most part I just live my life and try to make sure that my daughter has as much joy as she can but sometimes I worry. The fact that she has no instincts makes me wonder if I am doing everything I can. She has PT, OT, ST and early intervention all twice a month each. I just wondered if anyone else recognized these symptoms.

Thank you

Ruled out by therapists & doctors:
Autism
Cerebral Palsy

[QueenAngie]

Welcome to the board!

Give your little sweetie lots of hugs & kisses! Bet she is the little sunshine at your home.

Glad that she is in early intervention with the PT/OT/ST.

No answers for me, but maybe another new friend online here can help.

[mollymae]

Have they done any test for dyspraxia?

[DragonsMom]

Originally Posted by mollymae

Have they done any test for dyspraxia?

Hi Mollymae,

The ST mentioned "apraxia" I believe but didn't diagnose her. Do you know what testing can determine that and what specialist runs that test? Does dyspraxia or apraxia have anything to do with Rett Syndrome? If she had a chromosome DNA blood test that came out 'normal' would that mean she does not have Rett's? I'm sorry about all the questions but any knowledge that you have on anything is so helpful to me.

Also, thank you for the welcome QueenAngie I need this place so much.

[mollymae]

I have a friend whos little boy is dyspraxic and he honestly didn't talk till he went to school. ( speech dyspraxia) He didn't walk till he was nearly 3.

http://www.dyspraxiafoundation.org.u...d_symptoms.php

I've also been told of a condition that sometimes accompanies it called Asperger Syndrome

Sorry I can't be anymore helpful, my knowledge is very limited but I just thought I'd mention them, so perhaps you could look into them.

I hope you start finding some answers soon.

[MJ7]

Dyspraxia is the first thing that comes to my mind too. Seems the act of crawling and walking also seem to stimulate language skills. Good for you getting your dd into services so young!

[QueenAngie]

I was also going to suggest Asperger Syndrome,
but I am not an expert in this area.

Have you tried for 2nd opinions from another doctor?

[DragonsMom]

We've been to the Cleveland Clinic, Rainbow's and Yale Children's Hospital. We're back at Rainbows but yes, we've had so many different doctors and pretty good ones, I might add.

I guess every once in awhile I freak out. I don't know why-- most times I am okay with everything but then I get worried that something was missed or that we should be doing something that we're not. Honestly, I know this is terrible but I don't trust the doctors to guide me. I think when I get these feelings, even if my friends and family think I should relax that maybe I get them for a reason.

I trust the therapists far more than I trust any doctors because of the progress my daughter has made in the year that she's had therapy. Not only that but they are a support to me. The doctors are SO negative and when we are there for an extended period of time things seem to just get worse. It's so amazing what positivity and encouragement can do for a parent and then how it follows suit to progress with the baby. I wouldn't believe such a thing if I didn't experience it. I really do believe everything happens for a reason.

I'm going to read up some on dyspraxia. We are in a bit of a pickle just because of the fact that 7 months ago we moved from Ohio to Connecticut and now we just 3 weeks ago moved back to Ohio. Our therapists in Ohio are the absolute BEST therapists I can imagine there being and I'm glad to be back. We're not sure whether or not we'll be placed with them again we're going to fight for it as hard as we can. The sad news is that our previous ST has retired.. boo hoo.. she was the one that had mentioned apraxia to me which I'm wondering now if I misunderstood her and that she was talking about dyspraxia. Luckily I kept in touch with all of them- we all exchanged contact info when we moved. Grace is one of their "super babies" as they put it because she has such a significant delay but makes such wonderful progress so we've all kept in touch. I went to conferences and such in CT for Sensory Integration Dysfunction and passed on all of the materials to them, things like that. I'm rambling now. I'm sorry, it is so good to have friends that understand. I am really happy to meet all of you and likewise want to extend the invitiation that if anyone needs someone to talk to I'd be honored. I have been through a lot and have a lot of knowledge to share as well. Even though I can be a basket case from time to time I try to pay it forward for all of those that have helped me through the tough times.

Nice to meet you all,
Erin

[LilMomma]

Hi,
You had mentioned Rett Syndrome. My daughter has that, she was diagnosed with it at 24 months. Dyspraxia can be a part of Rett Syndrome as can all the other things you listed. My child has scoliosis, hypotonia, developmental delay, was diagnosed as failure to thrive because of several feeding issues, and now has a feeding tube. She has seizures. She has never sat up on her own, stood, crawled, walked or talked very much. She used to say a few words, none now. Rett Syndromes' severity varies from child to child. Some kids can still walk a bit with help, some learn to communicate via flash cards and the like. In any case, all you need to do is go to a geneticist and tell him you would like her to be tested for Rett Syndrome. They will draw some blood and check it out. You can't really just read up on Rett and say "oh my child has this" since there are soooo many symptoms, it's just best to have bloodwork done. Also, Rett can be misdiagnosed as Aspergers, and Autism. Another reason to see a geneticist. I wish you and your daughter all the best, and hope she does not have Rett. Although I understand how badly you want to figure out what is going on with her. Kudos to you for getting her early intervention and therapies so early. Feel free to contact me anytime.