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borngmama
06-14-2008, 08:30 AM
I'm not sure what section to post in now! We were ready to see the pediatric specialist,and they had to cancel so we were refereed to a local regular orthopedic Dr. He said she does not have idiopathic scoliosis,its neurological. What? So what does that mean! He said not only is there a 18 degree curve in the upper,the bottom of her spine is not right,something about oblique. Her curve is opposite of what you normally see in idiopathic scoliosis.
He is not comfortable treating her,and said we need to see the pediatric orthopedics specialist,and see a neurologist,which we have already seen many times,but never since the scoliosis.
She's never had an MRI of the spine which i hope is the next step.
Just a quick background in case you can help and figure out what this all means. No telling when we will get an appointment with the specialist. Lindsey is 12,coordination issues,pecus, ex, sprengles,2 spina bifida occulta's, feet turn out,hypotonia,developmental delay and verbal apraxia. She also has a narrow palate,and currently wearing a palate expander.
if any of this sounds familiar ,please let me know, What is neurological scoliosis,and what she we be pushing for,and looking out for? i though idiopathic means unknown,well this is unknown too! This Dr said he's sure everything ties in together,which i've always though but never heard.

Jennie

LindaRacine
06-14-2008, 03:26 PM
Hi Jennie...

I suspect the doctor meant neuromuscular scoliosis, which refers to a scoliosis that is caused by an underlying neurologic condition (e.g., spina bifida, CP, syringomyleia, etc).

I think this type of scoliosis is often reversed when the underlying condition is corrected.

Good luck.

Regards,
Linda

JamieR
06-18-2008, 09:01 PM
I think Linda could be right. My cousin also has scoliosis and hers was caused by her spina bifida.

borngmama
08-13-2008, 12:55 PM
I'm sorry it took so long to write back.

We are still waiting to see a pediatric orthopedics Dr at Miamis Children's hospital. We saw the neuro and i was told even if its neurological,its not like there's a pill thats going to make her all better,we just have to deal with orthopedics at this point,she said she needs an MRI of the spine for sure,but we have to wait until we go to the new Doctor.

I don't understand how her scoliosis can reverse itself,even after fixing something,if there's something that can be fixed.

Jennie

emarismom
08-13-2008, 06:27 PM
Please read my PM.

Pooka1
08-13-2008, 09:35 PM
Lindsey is 12,coordination issues,pecus, ex, sprengles,2 spina bifida occulta's, feet turn out,hypotonia,developmental delay and verbal apraxia. She also has a narrow palate,and currently wearing a palate expander.
if any of this sounds familiar ,please let me know, What is neurological scoliosis,and what she we be pushing for,and looking out for? i though idiopathic means unknown,well this is unknown too! This Dr said he's sure everything ties in together,which i've always though but never heard.

Jennie

Hi. Based on what I could grasp today in our visit to the geneticist, I would ask about ruling out homocystinuria at this point. That is a metabolic syndrome and can be ruled in or out with a simple blood test.

Good luck.

Good luck.