Does anyone have a child with scoliosis?

[laughinplace199]

DD14 was diagnosed a little over a year ago. At that point, she just went to the pediatrician every few months and he'd measure her back. For a while, things were the same or even getting a bit better until her last appointment in October. It was getting worse, so her ped sent her for an xray to compare it to the initial xray the year before. He said he wasn't worried but she should have another xray in 3 months. Well, we just had that one and it's a little worse, so he's sending DD to the Spinal Program at Children's Hospital in Boston.

I have no idea what to expect when we see the new dr at Children's. Anyone care to share their (or their child's) experiences?

 

[luvmarypoppins]

Wishing your dd all the best.

Did they tell you what the degree measurement of the curve is? That is important to see how much it changes etc.

I had to have surgery when I as a teenager I had 2 curves. I had to have 2 rods put in. They are out now due to some complications.

I think that once it goes over a certain degree then physical therapy etc. or bracing really wont help. My friends dd tried the brace and pt and she ended up having surgery anyway.

Its good your dd is going to a center that specializes in it.

 

[laughinplace199]

Thank you. Her measurement was 26 degrees.

I can only imagine how scary it must have been for you to have surgery as a teenager. Thanks for sharing your experience. Her doctor said he doesn't see surgery in her immediate future and that the spinal program at Children's is one of the best, so we're just keeping our fingers crossed.

 

[DVCJones]

My DD is younger than your DD, but seems to be following the same path as your DD. We have always gone to Boston Children's Hospital. They are FABULOUS!!! Don't be surprised if they choose to continue to watch her for a bit longer. Girls don't grow much after 14. Many even stop growing by then.

Good luck. You are in good hands.

 

[Hardy]

My son has scoliosis. Has your daughter started her period? The biggest concern with a curve is how much more it will go before growth stops. If she has a lot of growth left, that is a lot more concerning than if she started her period 2 years ago and is basically done skeletal growth. Right now my son is 12, has a ton of growth left and has a very high curve. It is difficult to treat. He wears a high boston type brace 23 hours a day, but has been fitted to a nighttime brace he will get soon to help better control the curve. We are hoping to avoid or delay surgery. His bottom curve is at T8 which is at the upper limit of treatable by brace and is top one is not correctable except by surgery. The hope is that holding the bottom curve straighter will improve the upper curve. He may need a Milwaukee brace or just give up and wait for surgery, we just have to see.

If your daughters curve remains at 26, it's really nothing to worry about and won't affect the rest of her life. Once it gets to 45+ you are kind of looking at surgery point. So she may or may not need a brace, either full time or just at night, which is intended to hold the curve, not improve it.

We don't have surgery experience or anything yet (or ever will I hope!) but we are recently starting this journey (started bracing in dec) and I'd be happy to share anything we have learned so far.

Sent from my iPad using DISBoards

 

[sukhakuli]

Make sure they take measurements standing and laying down. For me, I have a 20+% curve standing, but only 7% laying down. We found out my legs are different lengths, which is fairly common with scoliosis.

 

[jtirishbelle]

Have you taken her to a chiropractor?

My daughter had slight curvature of the spine, and it was corrected after repeat chiropractic visits. I would think surgery should be a last resort, especially at that age.

 

[lauradis]

Have you taken her to a chiropractor?

My daughter had slight curvature of the spine, and it was corrected after repeat chiropractic visits. I would think surgery should be a last resort, especially at that age.

This worked for my oldest son.

Make sure your dd is aware that she will need to pick a career that isn't hard on the back too.

 

[Luv Bunnies]

The nurse at my son's school called me last spring and said she had just done scoliosis checks on the 8th graders. She noted that my son has an 8-9% curve and that I should take him to the pediatrician for follow-up. The doctor's initial measurement showed 8%, which was confirmed by an x-ray. At his 6 month check, nothing had changed. The doctor will continue to measure over the next few years, but doesn't think it will get any worse.

My son is tall - slightly over 6 feet at age 15. He had a few really quick growth spurts last year, which the doctor said can contribute to the spine being curved. The only real effect is that, when his arms are at his sides, one hangs just slightly lower than the other. The costumer in his theater group noticed it last year when she was fitting him for a costume. This year, he was playing a well-to-do man in Cabaret and she wanted his suit to look impeccable. While fitting him she said, "Oh that's right. You're the guy who needs his sleeves adjusted."

 

[summerblue]

Okay as a person who has scoliosis, mine has not gotten worse since I was 17 (in my 30s now). I occasionally have discomfort but have been regularly seeing a chiropractor since 18. I wore a back brace while sleeping from the time I was 14 until 17.

I have two step sisters, one had severe scoliosis but also gad a muscular disease so her muscle tone was not strong enough to prevent it from getting worse. She had surgery at 15 due to the severity of her curve. Absolutely completely not related to the surgery but due to muscular dystrophy she lost her ability to walk, which was already going before surgery.

My other sister, is a spoiled brat couldn't stand for anyone to have extra attention, so insisted on surgery ( by the way they had two rods put in on either side of the spine), even though her curve was not at a severe level, they did the surgery she recovered quickly, she has birthed two children and no residual problems from the surgery.


And yes have measurements taken standing and lying down, DD had a chest X-ray while standing and the dr swore she had scoliosis, took her to the specialist done one laying down and no curvature, different length legs as well as he said she was probably standing awkward when the first was taken.

 

[laughinplace199]

Thanks so much for sharing your stories!

DD is a late bloomer and has not started her period yet, so that is part of the concern since she is still growing.

Her pediatrician wants her to be seen by the spinal dr within the month, so we'll see what happens once we get an appt.

Thanks again!

 

[InMemory]

My son was diagnosed at the beginning of Dec. we go tomorrow to pick up his brace we are all a bit nervous. He is 13 yrs. old but is the size physically and mentally of a 6-8 yr. old. Just some insight a band aid on our knee makes it hard to walk ....a new pair of shoes means we limp for a week. He has huge sensory issues. Just wearing the body sock for measuring was sending him into tears so I fear we have a long couple weeks ahead of us getting used to this. He measures at 37 degrees right now and we believe he is at the start of this. Dr. Thinks surgery is imminent. Brace is to hold it off as long as possible and see how fast he progresses. Bone age he appears to be about 8 so he'd technically have many years left to grow but he doesn't exactly follow the norm so it's anyone's guess. His curve spans from T7 to L1. Glad I found this thread. I'm sure I will be back for advice.

 

[laughinplace199]

Thanks for sharing your stories, everyone!

We went to the dr at Children's yesterday. DD will have to wear a brace 14-18 hours a day. I think neither of us was totally prepared for this, and DD is so upset.

She was measured for the brace yesterday and we go back in a few weeks to get it, We'll also meet with a physical therapist and a few other people as well. They told us to plan to be there all day.

I know this isn't the end of the world and things could be worse, but sometimes it's hard to be 14, even when things are going well.

 

[InMemory]

We were completely unprepared as well. I cried for my son the whole way home from the Drs. It's so hard for him anyhow why another thing? We are on day 12 of wearing the brace and are up to 16-18hrs/day. Need to add about 4 more hrs to be where they want us to be but don't know how. There are highs and lows . As a mom there has to be a weird combination of compassion and sternness. It's so hard I don't think I could do it but I'm making him but I feel terrible about it. We have also been shocked by "friends" who are being very judgmental saying we shouldn't have chosen the brace and gone to a chiro for a year. But when the Dr is telling you it's bad and going to get worse, it's not like you have a year to figure out if its going to work or not. We did consult a chiro and she said get him in the brace and we will work on it at the same time but he's severe enough to get going! Sorry for the vent its been a rough week. On the encouraging side day one and two with the brace were awful....day three was a turning point. Hang in there will be praying for her!

 

[laughinplace199]

We were completely unprepared as well. I cried for my son the whole way home from the Drs. It's so hard for him anyhow why another thing? We are on day 12 of wearing the brace and are up to 16-18hrs/day. Need to add about 4 more hrs to be where they want us to be but don't know how. There are highs and lows . As a mom there has to be a weird combination of compassion and sternness. It's so hard I don't think I could do it but I'm making him but I feel terrible about it. We have also been shocked by "friends" who are being very judgmental saying we shouldn't have chosen the brace and gone to a chiro for a year. But when the Dr is telling you it's bad and going to get worse, it's not like you have a year to figure out if its going to work or not. We did consult a chiro and she said get him in the brace and we will work on it at the same time but he's severe enough to get going! Sorry for the vent its been a rough week. On the encouraging side day one and two with the brace were awful....day three was a turning point. Hang in there will be praying for her!

Wow. I'm sorry to hear that you've had to deal with such judgmental people, especially ones who are supposed to be friends.

I completely understand where you're coming from, you know he has to wear it, but it still must be hard to be the one who has to make him do it.

Best of luck to your little guy.

 

[PaulaSue]

Sorry to hear.

The doctor noticed my middle had curving at her last appt. X-ray so far is wait and see if it gets worse.

My youngest DD had 2 vessel umb cord and has been watched since before birth for issues related to the 2 vessel. Her back looked weird since birth (dimple big enough to stick your pinky down inside it) and after MRI they take x-rays every few years to keep track of her back.

We actually have to go next month or so (this reminds me to make the apt) or my 2nd DD follow up x-ray. Ugg

 

[tina.tina]

We were completely unprepared as well. I cried for my son the whole way home from the Drs. It's so hard for him anyhow why another thing? We are on day 12 of wearing the brace and are up to 16-18hrs/day. Need to add about 4 more hrs to be where they want us to be but don't know how. There are highs and lows . As a mom there has to be a weird combination of compassion and sternness. It's so hard I don't think I could do it but I'm making him but I feel terrible about it. We have also been shocked by "friends" who are being very judgmental saying we shouldn't have chosen the brace and gone to a chiro for a year. But when the Dr is telling you it's bad and going to get worse, it's not like you have a year to figure out if its going to work or not. We did consult a chiro and she said get him in the brace and we will work on it at the same time but he's severe enough to get going! Sorry for the vent its been a rough week. On the encouraging side day one and two with the brace were awful....day three was a turning point. Hang in there will be praying for her!

It's interesting how many "friends" think they know more than a dr. I am sorry you are going through this. My kids don't have any physical issues but they are very sensitive. I know exactly what you mean about the bandaid issue, etc.

When I was a kid, the school and my dr thought I had scoliosis. I had no idea what that meant. The orthopedist said I just stood funny. My mother was so relieved. Now I know why Good luck to everyone dealing with this. It's so much harder when it's your kids going through such tough things.

 

[Pixie Dust for Me!]

One of my best friends wore one 8th grade through most of her sophomore or junior year in high school and it really helped. Yeah, it wasn't always fun for her and some boys made fun of her, but her friends stood by her and we dealt with the "meanies." She had it doubly bad as she also had braces on her teeth with headgear at the same time as the back brace and had to get glasses too!

Today, she stands tall and straight at nearly 6 ft and modeled throughout her late teens and well into her 30s. Now she coaches other young models. She does yoga to take care of her back and understands that this is a lifelong commitment.

Hang in there and good luck to you both.

KC

 

[laughinplace199]

One of my best friends wore one 8th grade through most of her sophomore or junior year in high school and it really helped. Yeah, it wasn't always fun for her and some boys made fun of her, but her friends stood by her and we dealt with the "meanies." She had it doubly bad as she also had braces on her teeth with headgear at the same time as the back brace and had to get glasses too!

Today, she stands tall and straight at nearly 6 ft and modeled throughout her late teens and well into her 30s. Now she coaches other young models. She does yoga to take care of her back and understands that this is a lifelong commitment.

Hang in there and good luck to you both.

KC

It's great to hear that things worked out well for your friend. I'm trying to remind DD that this is temporary and necessary if she hopes to avoid surgery down the road.

DD goes to an all-girls school, so at least she doesn't have to worry about boys teasing her. Gotta look on the bright side, right?

 

[WorldWacky]

My niece was diagnosed with scoliosis at 2 1/2. She had a 33 degree curvature. She's now 4 and there has been some improvement. She will always have a curve. She has an extra piece of rib on one side. She still may need surgery at some point, but for now they'll just continue to monitor her.

OP, best wishes to you and your daughter. Being a teen is difficult enough. The story from a pp about the girl who became a model is a great one to hear.