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Self esteem and scoliosis

(18 Posts)
phlebasconsidered Fri 06-Dec-19 19:23:25

My 12 year old dd has hyperlordosis scoliosis (a front to back curve) and a side to side curve. As she is still growing they are just monitoringvher but they are unsure they can operate anyway - front to back curves are harder to operate on.

She has a very wonky look, her bum sticks out and she looks like she's leaning forward all the time. She wants to give up football because she can't run as fast anymore, plus some girls are being horrible and calling her fat and wonky. She isn't fat - but she does have "folds" because of her curve. She won't have it and is insistant she's fat. Partly because it's better than facing up to her curve, I think.

She's so unhappy. Clothes shopping, bra shopping is a nightmare. Nothing fits right on her and it all makes her feel worse. She sticks to leggings, shorts and baggy tops but my heart aches for her.

She's also in pain a fair bit. She does physio but it doesn't help.

Does anyone know of any good clothing chains, bra forms and style of top that they can recommend? Also any good books, role models? It is likely that she will always have a problem and I'm just left bereft of ideas. She knows she is loved to bits, but some advice from.other mums of scoliosis girls would be so welcome .

OP’s posts: |
gyrur Fri 06-Dec-19 19:34:17

it must be difficult. did you see save my child on ch4 where the girl had scoliosis and raised funds for pioneering new treatments in Turkey. I think the nhs are looking into it but not currently available here

phlebasconsidered Fri 06-Dec-19 19:40:09

No, I didn't, but i'll take a look!

OP’s posts: |
Sexnotgender Fri 06-Dec-19 19:40:19

No advice but heaps of solidarity. My nearly 16 year old DD has very severe scoliosis. 25+ operations and still a very noticeable shoulder hump. Very mild kyphosis in her neck that surgeon can’t fix so just praying it never progresses.

phlebasconsidered Fri 06-Dec-19 21:58:08

25 operations! My goodness, she must be so resilient!
You can see her front to back curve here, she has a kyphosis curve at the top and a hyperlordotic at the bottom. Her side one isnt too bad at 20% so far. Her neck and back hurt all the time and her hips are not very mobile. She sort of waddles. I just hope it doesnt get worse. She is really short gor her age too.

But she's so clever and funny, kind and quirky. She just can't see past her back at the moment. Hospital are not doing much to help. They say they can't until she's grown a bit more. She hasn't started her periods yet.

It's her mental health that worries me.

OP’s posts: |
Ifyoudidntlaugh Sat 07-Dec-19 03:12:09

Hi! My DD is 13 and was recently diagnosed with scoliosis. Such a shock. And there’s very little info or support. Just physio and a strange, directionless waiting game. Not even sure what we’re waiting for... specialists in Edinburgh? Surgery? It’s all a big maybe. And everything at snails pace. We’ve been doing Google research, as has she, but this can be frightening. She says she’s in pain a lot of the time. The mental impact is hard to gauge as she’s a typical teen and always says that she’s “fine”. Such a worry. Should we be pushing harder for faster action or do they make you wait til your child stops growing? Hard to know what to do for the best?

dreichXmas Sat 07-Dec-19 03:33:02

I have an adult friend at Pilates that has this condition. She has individual tailored lessons.
I don't know if that would help, it might help her develop confidence in her body ?

phlebasconsidered Sat 07-Dec-19 08:25:34

We've been doing physio and waiting for 3 years. It does seem.directionless doesn't it? We basically get an xray and an mri every 6 -10 months and then get offered 6 physio sessions and told yo give her ibuprofen- come back later. They measure spinal changes and that seems to be it.

Some children I see in the hospital have braces but my dd's curve is not braceable.

I just wish I knew more about it but even proper medical database searching doesn't give much help.

You'd think there would be a teen support group but even scoliosis Uk haven't been much help.

OP’s posts: |
newdeer Sat 07-Dec-19 08:36:27

DS2 has noticable scoliosis. It also makes him very short for his age which he is acutely aware of and sad about. And it makes him look like he's slumping forward - the bpdy language of a lazy, low energy person, which irritates adults. So hard on him.

He is religious about his physio. Does it for 30 mins every night and it really does help - his pains have gone and he can hold a more upright position for much longer.

Have you 'educated' the school? I'd send an email, speciifcally to any sports coaches, but also to school counsellors and Head of year, explaining the emotional knock-on effect of scoliosis and asking for them to pick up on and stamp out any mocking and bullying really forcefully, and to educate the girls who are doing the bullying.

newdeer Sat 07-Dec-19 08:44:35

Meant to add, a great role mode, though not as famous among teens now as she once was, is Buffy the Vampire Slayer actress Sarah Michelle Gelle who has scoliosis. That 'sassy' stance that lots of people with side to side scoliotic curves have is all part of Buffy's heroic character. Usain Bolt has it too btw. Google famous people with scoliosis.

A good role model for my son is Andy Hamilton. He's only 5'2" tall with a very noticeable hunch but he went to Cambridge, he's a brilliant comedian, successful writer and TV personality and married with kids. He proves to DS that you can have everything you want, whatever your shape. Keep your eye out for a female equivalent. Someone who is thriving in the world, has found love, success, happiness, and their physical issues haven't held them back.

newdeer Sat 07-Dec-19 08:50:06

OP I really feel for you. DS is now 17 and we just have had to come to terms with the lack of medical support. He hasn't seen a physio for three years. He's still doing the same set of exercises he was given aged 12! He gets measured twice a year. Last time the consultant said to him: you won't ever be tall. But you're clever and you have gorgeous hair (he does) whereas I am bald. I;d love to have your hair. You;d love to have my height. We don;t have everything in life. Learn to love what you have.

It was said with such kindness, I think DS tried to take it on board. But we are keeping a look out for new medical breakthroughs. I even wrote t some specialists suggesting a cure that I'd imagined but hadn;t the know how to make happen. They took it seriously and discussed it at a meeting, apparently. They came back to me with detailed reasons why it was impossible. But I reckon in our DC's life time they will find a way to repair and built up those deformed vertebrae. I was told it's because they are so close to the spinal nerve, they are terrified to doing damage to it.

samandcj Sat 07-Dec-19 09:06:36

My DD (now 22) has a double curve. She has a poor posture -head held forward, hips not level. During her teens she was part of a scoliosis support group based in Manchester. This helped us (parents) more than DD as she saw other youngsters undergoing operations and being helped, whilst she wasn't suitable for the procedure.
The thing that has helped her the most was finding an activity where the scoliosis had no impact. She plays the trumpet ...this also had the advantage of increasing her lung capacity. She is good at it. It gives her confidence, it allows her to mix with people the same age as her, who see her as a good musician rather than someone with scoliosis. When she started at university she could join orchestras etc There was a ready made group of people she was comfortable with.... rather than the sideways glances she gets from some folk!
With respect to clothes - dd has developed a "I don''t care how I look " attitude.......but when she does make an effort then she goes for tunic style tops (she avoids dresses at all costs)

MrsJoshNavidi Sat 07-Dec-19 09:07:32

OP there's a charity in Swindon called Dressability. I don't know if it's a national thing. The lovely ladies will adapt high st clothes for people with disabilities if deformities, so that the garment looks better when being worn and/or makes it easier for someone to get dressed. You might be able to find a dressmaker who can help with the clothes thing at least, even though it won't help with pain etc.
Looking good is important to teenagers.

Sexnotgender Sat 07-Dec-19 19:40:40

My daughter’s surgeon told us not to underestimate the impact on her mental health.

Sexnotgender Sat 07-Dec-19 19:45:28

Pre and post final fusion. Post is with instrumentation obviously.

treefall Mon 09-Dec-19 00:02:28

There's a lot of love on this thread.

smallgreyelephant Thu 19-Dec-19 10:44:58

Hello,
SAUK is the Scoliosis Association UK charity. They do meet-ups, sponsored events (runs/ walks etc), have chat boards for adults and teens and can put you in contact with other teens/ families. They have a newsletter and lots of resources.
There's a book: Straight Talk with the Curvy Girls that has a chapter devoted to fashion advice.
Also if you google celebrity with scoliosis you get a lot of famous people...

smallgreyelephant Thu 19-Dec-19 10:50:05

Also lots of blogs out there with fashion advice.
DD1 has scoliosis but has mainly overcome it with bracing and never really had much asymmetry. Her issue was hiding the brace.
We did a lot of looking up online and found ways to "own" what was happening as much as possible as well as try to find things that can help her self esteem.

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