Re: Looking for RSS kids with Scoliosis

[Guest guest]

My 4 yr old son is not RSS, but SGA (small gestational age) or small

stature & has scoliosis from a tethered spinal cord. He is doing

great since having surgery to correct his spinal cord in July '03. I

would love to be in contact with another parent of a child with

scoliosis!

[Guest guest]

My son was not a premie. He was actually full term & weighed 6 1/2lbs! He

just didn't grow much from there. Caleb has an S curve also! The curve

was getting worse & his leg limb difference was getting worse. from

MAGIC suggested seeing a genetisist, who suggesting seeing a neurologist.

We were already seeing an orthopedist at another hospital who put us on a

wait & see program. Since having the sugery to correct the tethered spinal

cord, we haven't seen an orthopedist. Mostly because his scoliosis has taken

a back seat to all his other stuff. The dr have never suggested a brace or

surgery for the scoliosis. I thought a brace doesn't do much for scoliosis that

a child had since birth. Surgery on a child is soooo scary for a parent!

Research as much as you can, is my suggestion.

Feel free to email me personally.

[Guest guest]

Hi,

Mercedes also has scoliosis. I wasn't told the percentage of the curve.

She is 6 y/o. She is 37.5 inches and 37.5 poound.

Yes, stuffed her because I was listened to a GI doc who thought she needed

calories.

I've stopped stuffing her and have stopped the extra calorie tricks since seeing

Dr. H. at the convention.

Stupid GI doc.

Marcy Conley wrote:

Hi Katy

na has been diagnosed with rss by one doctor and 2 say no its sga. We have

been told along with her assymetry she has scoliosis. It was 12% 6month ago but

last week it was 15% so it is slightly worse even with the exercises. She has

leg lift in her shoes. She is 4years old.

We hope to go to the convention to see Dr. H and get the expert opinion if

finances get better.

Marcy nas mom 4yr 27lbs 35inches.

katyudine wrote:

Hi..

A mom has written me regarding her son who has scoliosis. I would

like to encourage her to join the listserve, but in the meantime want

to connect her with parents who are dealing with similar issues. Her

son is 8.

Let me know!

Thanks,

Katy Frissora

RSS Division Co-Consultant

MAGIC Foundation