Re: looking for support - my daughter has severe scoliosis and soon will be casted

[Guest guest]

Stefanie,

I am 's mom age 11 months and 1 week into his first cast at Chicago Shriners Hospital. Our story is very similiar to yours. We were fortunate to have found the support group prior to seeing the first Orthopedic Surgeon and therefore sought our second opinion at Chicago Shriners immediately. was casted at 67 degrees less than 4 weeks after his initial diagnosis. There is no telling how much progression we would have seen if we would have listened to the initial surgeon. It was these wonderful women who gave the lifesaving advice. You are on the right path for Sabina. If you are in Minnesota you are closer to Chicago Shriners than Philly. Cree is our doctors nurse and coordinator. She is wonderful and would be happy to get you in to see our doctor. The contact information is on the support site, but I would be happy to give it to you if you

need it. Just send me a personal email. had a casting appt less than a week after his initial appt. My friends on the site Chrissy and Amy had their children casted within days of their initial appts.

We are one week out from our first cast and other than little things, is back to his normal self. The first 3 days are the hardest adjustment. He is coping better than I am to all the changes. It is so much better than the alternative and at least worth a try. If you would ever like to chat, I will give you my number. It has been friends from this site who have gotten me through the shock of all of what is going on!

Catie, 's Mom (11mo, 67 degrees to 20 in first cast!)

Subject: looking for support - my daughter has severe scoliosis and soon will be castedTo: infantile_scoliosis Date: Tuesday, November 24, 2009, 5:51 PM

Hello to all of you, I'm new to the group. I was referred here by Mayes, whose daughter has also struggled with PWS and scoliosis.

My daughter has PWS and we discovered 6 months ago that she had scoliosis. I keep noticing a curve when she was learning to sit. I made the doctors xray her. On her first xray laying down at 9 months, it was 45-50 degrees. The orthopedic person we saw recommended waiting 6 months to see what would happen. When they re-measured her at 15 months sitting up, he said the curve was over 90 degrees. We were devastated and also felt so let down by the providers that they would just want to 'wait' to see. The doctor said things like 'tragic' and 'shortened life span.' I cannot even begin to describe my pain that day. Of course the orthopedic person we saw recommended surgery - we later found out he was not an orthopedic doctor but orthopedic surgeon. We're pretty sure he always viewed our daughter as a surgey candidate. He never mentioned casting. He predicted she would fail in a brace and need surgery

anyway.

We got some advice from another provider and were referred recently to Dr. VanBosse at Shriner's in Phili. He looked at her xrays and said we should cast. We live in Minnesota, but are willing to travel to see him. The other doctor locally never even mentioned this option to us. Of course we want to avoid surgery, or at least delay until she is older. She is only 17 months old.

We have her scheduled to get her first cast Dec. 10th at Shriner's in Phili. We see this as the best option right now. I have been reading some of your posts and understand that curves can be reduced in casts, so we are hopeful. Dr. VanBosse has been caring and has taken an interest in helping us, which is so wonderful.

At this point, I am reaching out to other parents for emotional support and additional advice. I have talked to two moms by phone who have said their children under age 2 adjusted fine to the cast. I think what I am really hoping to hear from another parent is that my daughter is going to be okay, and that she'll adjust to the cast and we'll see some results. I know her curve is very bad - but we do not believe it is as bad as 90 - as the doc only took 1 xray of her sitting up all slumped.

I feel so badly, given that she loves her baths and swimming. I recently read about the possibility of a waterproof cast? Is this an option everywhere, or just at certain hospitals? How do children sleep in the casts? Will she be too weighed down to learn to walk? Does the cast hurt or itch? Will she be in pain for long after she gets her first cast? What can I do to make the adjustment easier for her?

Thank you to any parent who reads this and reaches out to me. I am so thankful already to have found this group. I have been feeling so alone.

-Stefanie

Mom to Dale, (age 4), Sabina with PWS and scoliosis age 17 months, and expecting a baby girl in March 2010