[lactationlady]

It looks like her right hip is starting to subluxate. The ortho says she will eventually need surgery.

I asked if there was anything we could do to help and she said only PT to strengthen the muscles as much as we can.

I also asked if there was anything she is doing that make it worse - she bum shuffles to get around and often sleeps folded in half at the waist - but the dr said it was just because of the hypotonia and joint laxity.

Does anyone have any other info or advice?

This is a very, very common problem among kids with Kabuki Syndrome, so I wasn't terribly surprised. She has been bursting into tears randomly lately, like she is hurting. I wonder if it is the hip?

 

[AuntG]

Poor baby

Just wanted to send hugs.

Do you think it's popping out and hurting her? Maybe it just scares her? I dont know. Poor thing.

Out of curiousity, what does PT do with her? What are her PT goals?

 

[lactationlady]

Quote:

Originally Posted by AuntG Poor baby Just wanted to send hugs. Do you think it's popping out and hurting her? Maybe it just scares her? I dont know. Poor thing. Out of curiousity, what does PT do with her? What are her PT goals?

Thanks for the hugs.

I wish she could tell me if she was hurting. She is verbal, but I don't know that she could tell us if, or where she was hurting.

She does not yet crawl, stand without support or walk, so our PT goals right now are crawling and standing. We do a lot of standing at the couch playing or at her play kitchen, etc. She can get in a 4-point crawl position, but can't move forward once she is there. We are working on army crawl so that she can get the idea of how the movements work.

Just as an aside, she started PPCD (preschool program for children with disabilities) in Feb. They only children in her class that she EVER mentions or will have anything to do with are the two little boys with T21.

 

[AuntG]

Quote:

Originally Posted by lactationlady Just as an aside, she started PPCD (preschool program for children with disabilities) in Feb. They only children in her class that she EVER mentions or will have anything to do with are the two little boys with T21.

Sweet! They probably feel each others' similarities? That's cool.

Do you do any binding at all?
Check out this journal article from Physical Therapy Journal. http://www.ptjournal.org/search.dtl
It wouldn't let me link to the pdf.
Do a search for dysplasia and you should get an article about a trochanter girdle for preventing dislocation when weight bearing. Is this something you guys utilize already or could utilize?

 

[lactationlady]

No, we haven't done any binding. I will read the article tomorrow when I am more coherent. Thanks so much for sharing the info!