scoliosis

wildflower_142 · #1 May 22nd, 2012, 10:16 AM

has anyone here ever dealt with or had a child with scoliosis. Did i tell you all that Ashleigh (my 13 year old was diagnosed with it?) I can't recall if i did or not. Back in april the school nurse called me at the house (no surprise, because of Ashleigh's diabetes i get calls from the school several times a week!) Anyway she said that I would be getting a letter in the mail, but wanted me to have the heads up. they did the scoliosis screening at the school and Ashleigh failed. She suggested i get her into a doctor to have it checked out. So called our family physician and get an appointment for a week later. in the meantime i got the letter in the mail for our doctor to fill out and return to the school.

Took Ashleigh to the doctor and he agreed with the school nurse. I didn't notice anything with Ashleigh standing up, but when she bent forward i could see how one shoulder was humped up more than the other. But to confirm it she needed x rays done. So we were sent to get back x rays done (oh btw i have catie with me the entire time. As you can imagine this is not a leisurely trip). X rays done, and the doctor calls us the next day. She has a 40 degree curve in her spine. Then he also mentioned a 38 degree curve. So not sure if she has 1 or 2 curves, either way she has scoliosis. They set us up to see a pediatric orthopedist on 5/25. I'm assuming a brace is in order. Everything that i've read they say once you reach 20-40 degree curves you get a brace. At 50 degrees you go to surgery.

anyone know if you are limited in activities with a brace on? Ashleigh is supposed to start marching band this summer, and i'd hate to tell her she can't do it. Guess we'll find out for sure on Friday.

MellieB · #2 May 22nd, 2012, 03:00 PM

I wish I had some answers for you but I'm afraid I don't.

Rodger was diagnosed with it when he was younger. It caused him a lot of headaches and at times still does. He never used a brace but did need inserts in his shoes to help balance him out.

mommy2Breana+Brandon · #3 May 23rd, 2012, 08:30 AM

Sorry I have no answers for you either.

I wouldn't think it would effect her that she can't do marching band.

I hope you can get some answers.

SusieQ2 · #4 May 23rd, 2012, 12:10 PM

My neighbors have 3 girls and they all have it. The middle girl had surgery this past fall. She had a very severe case and wore a brace for 2 years. She had to wear it 23 hours a day. She could take it off to shower and for a little break at that was it. I don't think she really had any physical restrictions with it. The surgery took a few months to completely recover from.

Her older sister is having the surgery done this summer and the youngest one probably won't need it.

I hope that everything turns out okay for your daughter.

wildflower_142 · #5 May 24th, 2012, 10:33 AM

yes i did read that the surgery takes a couple months to recover from, and that she'd probably be out of school for a month. Hopefully we dont' have to take that route. I would be very surprised if they didn't give her a brace with a 40 degree curve. i have her xrays here at the house, but haven't opened them. I did tell Ashleigh that she would probably have to wear the brace for 23 hours a day. Tomorrow's her appointment so we'll see what they have to say.

wildflower_142 · #6 May 25th, 2012, 01:41 PM

had the appointment today. First they looked at her back, pointed out how her left hip stuck out further than the right (i did notice that when we were taking a walk). And then when she bends over how the right side is humped higher than the left. All outward signs of scoliosis.

They re-did her x rays because the original ones were hard to read plus they only did it from the front. They wanted a side view also.

The scoliosis is worse than the 40 degree curve that we were originally told. She has 3 curves in her spine. The largest is 55 degrees, the next is 45 degrees, and i can't recall the 3rd. I think it was 20-30 degree range. She is beyond the point where a brace would help. We need to consider back surgery. We have to go back to the orthopedist on July 6th. They want to give us time to think about the surgery, write down any questions we may have. We can pick when we want surgery (he did state that it's not life and death, and it's totally up to us whether we do it or not. But since her growth plates show she is still growing most likely the curve will continue to get worse).

Surgery would be 7-8 hours long. She'd spent about 4 days in the hospital, the first night would be in the ICU. She would be out of school between 2-4 wks after the surgery.