New diagnosis....been here before

[FTMoma]

I posted here a few months ago about my then 6 yr old dd. Well she is 7 now, has been disgnosed with mild scoliosis...never given a degree of curvature. Well at her 7 yr check up I asked the pedi to refer her to an ortho because of the scoliosis, and he said lets start fresh...he is a new pedi and I really do like him...so he sent her for an x-ray. I called a week later and he said it is only mild scoliosis and there is nothing they can do and she will be fine. Well when he ordered the x-ray he had them give me a copy of the films cause incase she needed to be refered I could take them to the specialist. So I had the films and took them along with the report to her genetics doctor and showed them to her and I was informed she not only has scoliosis but also a mild-moderate form of kyphosis. The genetics doc wants her to see an ortho, but my problem is the doc has to refer with her insurance. The genetics doc said she will talk to the pedi and ask them to refer her as she wants her to see an ortho for the scoli, kypho, and flat feet. Just as a background she is seeing a genetic doc as she is very small for her age, 39 pounds and 46 inches tall at 7 years old, along with almost no muscle tone. She wears a size 18 months in shorts for the waist size....but thankfully we have found Old Navy pants have adjustabe waists so we can get her a more normal size for her height and she isn't wearing only daisy dukes all the time.


What other options do I have besides waiting for the pedi to get off his butt and refer her?

Thanks
Julie
Mommy to 4 girls

[LindaRacine]

Hi Julie...

I'm not sure how easy it will be without a physician's report, but you might want to try Shriners:

http://fla-shrine.org/

Regards,
Linda

[FTMoma]

We went to the shriner's in Tampa last October and they said she doesn't have scoli and it is a posture problem. I am now wondering if maybe since it wasn't a bad case like they usually see if that is why, or maybe it was caught too early for them.

[Carmell]

Hi,

The description of your daughter sounds like she has enough "separate" things going on that someone needs to collectively put them together and make sense of what her make up is about. Do you have a developmental pediatrician in your area? This would be a good start. With your short description, she could have many things going on that are not yet documented. IMHO, she needs a full spine MRI to find out if a spinal cord issue is causing/contributing to the scoliosis and kyphosis. She also needs to see someone about the low muscle tone. Even if there is nothing besides PT to help the low muscle tone, someone who knows about it needs to document it. Does she have GI issues? Many of our kids have GI issues that parents don't think are important enough to mention to a doc.

Keep looking for a doc who will help you. Does your DD have any pain or tingling in her legs or feet? Does she have episodes when her legs give out on her? Don't give up.