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FTMoma
09-21-2005, 02:57 PM
We had our first appt with a pedi otrho yesterday and he took x-rays and said she does have mild scoliosis but didn't give us the degree of the curve. He also wants her to have a MRI of the spine since she is only 6 and has wscoliosis already. Unfortunately we won't be able to do that for a few months as her insurance runs out at the end of the month and now we have to wait for Florida KidCare to accept our application and get that insurance going. We were also accepted at the Shriner's hospital in Tampa, so we should have that appt some time next month. Hopefully they have somewhere we can get an MRI until we get insurance and if not we will just have to wait a little while. I knew I didn't have to keep Alexandra's appt with the pedi ortho yesterday but I just wanted to know for sure if she had it or not and I didn't want to wait til October for her to see a doctor, I am sure everyone understands that feeling. I am also feeling a little better after seeing this doctor that he doesn't feel she has Charcot Marie Tooth either...my husband has it and just told me that is what it was, he had been telling it was just a club foot cause he has been denial that any of his kids could inherit it from him. Thank you to everyone here for sharing their stories as they have helped me see this isn't a very serious issue to have to deal with.

Mary Lou
09-21-2005, 05:07 PM
Has your daughter been seen by a neurologist? My husband's family also has CMT and our daugther's ortho. doctor felt that CMT was the cause of her Kyphoscoliosis (Kyphosis and Scoliosis) but could only be confirmed for sure through testing done by a neurologist. Her neurologist is almost certain (although not confirmed through genetic testing) that she does have CMT and it is the cause of her Kyphoscoliosis.

Mary Lou

FTMoma
09-22-2005, 08:11 AM
We haven't been to the neurologist yet, as soon as we get her insurance again...hopefully before Christmas we will be getting her an appt with the neuro that the genetics doctor recommended.

What kind of testing do they do to determine CMT or not?

Mary Lou
09-22-2005, 08:38 AM
It sounded like they would be doing some sort of blood test to determine CMT or not. However, whatever testing they do, we were told it is VERY expensive and they suggested we check with our insurance before going any further. My daughter is 14 and has been through a lot in the past two years and really doesn't want to know if she has CMT or not. From the exam the neurologist did and what I've observed from my husband's family, I'm sure she has CMT but we refuse to dwell on it. If it becomes a problem in the future, then we'll deal with it.

I really hope you can get into Shriner's for your daughter. At her age, she does need to get an MRI to make sure there isn't any other issues with her back that might need to be addressed. Shriner's should be able to either do the MRI at their hospital or make arrangements for it to be done at another hospital at no or low cost to you.

Mary Lou