14yr old with Scoliosis - Increased pain and reduced mobility

[TheOriginalNutcracker]

Dd1 is 14, and is on the waiting list for surgery to have rods inserted into her spine to straighten it. The op is unlikely to be before October.

Up until now she has been coping well, but the increased bending and twisting of her spine is now affecting her ribs and hips and she is gettting an increased amount of pain from it. She has been taking the usual ibuprofen and paracetamol, but these aren't always helping.

I have had to collect her from school today as she felt unable to walk home, as her right hip was hurting that much.

Obviously, I shall be getting an appointment with the go asap, but I was wondering if anyone had any idead of stronger painkillers that they might be willing to give her.

Also, if anyone has any other ideas on how to help her mobility during the next few months, I would also be grateful.

Over the counter co co codomol instead of the paracetamol and diclofenac instead of the ibuprofen. Check the age ranges though and be careful with the diclofenac as it can cause stomach problems

Thank you, that's a great help.

Hello OP, this is my very first post, I joined after reading your post. Sorry to hear your daughter is in pain with her scoliosis.
My daughter is having her scoliosis corrected by surgery in 5 weeks. Atm, she isn't in too much pain, she takes paracetamol when needed but finds heat and back massages (from me) to be more effective.
Hope you can find something to help her, maybe some physio, October is such a long wait for her.
Good luck x

Hi lego, nice to hear from someone in the same position.

I was thinking that some sort of heat pad might help too. Does your daughter get any physio ?? We've not been offered anything at all.

hi,
I had scholiosis surgery when i was 16 am 35 now and I am more than happy to answer any questions you or your girls have.
I agree with the co-codamol and if you have any of the microwave wheat bags those helped me loads and still do - I'm sorry to say the surgery may not be the end of the pain but hopefully it should reduce it significantly.
Have you had any hydrotherapy this also helped me or swimming but try and find a pool which is recommended for the disabled as the water will be warmer and cause less stress.
let me know if i can be of any further help
xx

No, we weren't offered physio either but I have heard of other kids with scoliosis having it, either before surgery or after. My daughter wore a brace at night for 18 months whilst she was growing which gave her a lot of relief.
She has also been told at all of her visits to the specialist to stay active and that swimming would be of benefit in strengthening her back and core muscles.

is there any chance she could have the surgery sooner due to increased need & discomfort? I would ask about it, anyway.

Thank's for the posts.

Ive contacted the hospital today but the waiting list is still as it was. We are marked down for being able to go in at short notice, but that's the best they can do.
I'm ringing the docs at 2, to see if I can get an emergency appointment for tonight as she needs stronger painkillers if nothing else.

Staying active is proving hard at the moment, as she simply cannot do pe at all. School want a doctors letter from me, to prove to ofsted why she can't take part. You only need to look at her back to see that.

Have managed to find one private hydrotherapy pool, ironically, at the hospital she is under. Will have to find out how much that is. Have also been advised to apply for dla, although i think the chances of getting it are slim.

She must be so uncomfortable and I hate that there is little I can do. Her top curve at our last appointment was 65%. God knows what it will be by the time she has surgery.

How helpful are school being, is she able to get up and move if she gets stiff? are the chairs supportive? do the do DSE testing if they do a lot of computer based work? How heavy is her school bag and does she have to lug it about all day or can she leave heavy things in a locker?
I might be saying stuff you already know and do but I do know as a fellow sufferer even now if I'm not careful about how i sit and make sure i move regularly and carry things carefully then i will be in so much pain later.
Hope her GP helps
xx

Apologies if this sounds like trite advice but 2 things that have made a difference to my physical comfort have been Fitflop boots/sandals and a really good mattress topped with a featherbed (a baffle box one from QVC).

Before I got my Fitflop boots 4 years ago I used to struggle to walk long distances but now I can walk all day and that increased mobility has improved my strength generally as I'm getting much more exercise.

My daughter was in the same position this time last year - a curve above 60%, waiting for surgery and getting increased pain. Looking on the internet I saw Syndol advised - it is for migraines but it did seem to help when she had pain. It is a muscle relaxatant which some of the pain is caused by.
All I can say is a year later - she had surgery and rods put in. She has had pain - but it has reduced over the time, her back is down to 3% curve at the top and 15% at the bottom, she is back to nearly all her activities. It probably seems a long way off - but good luck and ask for any advise you want as it gets nearer the time.

Her school aren't being very helpful tbh. I was going to make an appointment to see their school nurse, but i've dealt with her in the past and she's not great.

The gp prescribed codydramol but after a dramatic dash to a&e on sunday, after dd collapsed with abdominal pain, she has stopped taking them. The doctors in a&e weren't sure what was causing the pain, and blood and urine results were clear. I know that a common side effect of the tabs though is constipation, so i'm wondering if it were that. Dd wont take them now.
She had the following day off school, because she is just so shattered from being in pain almost constantly.

My dad is going to let us borrow his tens machine to see if that helps, so fingers crossed for that.

The gp has also referred dd for an x-ray on her hip. He said that her posture could be causing extra wear and tear on it, and so he wanted to check just to be on the safe side.

Other than that thing are still much the same.

LAurie, - she does have a matress topper but she said it hasn't really helped. I mentioned fit flops to her and she looked at me as if I were mad. I got the same reaction when i mentioned a jazzy walking stick lol.

Tess - I used to take syndol for migraines myself, but hadn't thought of it for dd. I am pretty sure i heard recently hough that it has been withdrawn from sale. I will check.
Can i ask, did your dd have to wear a body cast after surgery ?? It is fab that your dd has done so well, and encourging to be able to tell my dd that too.

My heart goes out to you at the moment - 14 year olds do not need all this stress! Hope the pain is sorted somehow.
After surgery my daughter did not have a body cast - she had a corset for the 1st three months - a fabric contraption with steel rods in that she wore constantly to begin with and then gradually stopped using. Before the surgery the consultant said he would judge after he'd operated so we were not sure, but she was very happy not to have to as she'd had one before the surgery and longed to get out of it. Any other questions more than happy to help!

My sister and I both have scoliosis- she had the op, I didn't, but we both had to wear the braces for 23 hours a day until we were 15. Your daughter has my sympathy- it's not fun. I still sometimes have nightmares about it!

Heat is definitely good, and I think a good TENS machine could be great, but large pads make a difference, as does having someone who knows their stuff (physio trained in it, preferably) talk you through it. Massage, too- if you can afford it, I would look for a Tui Na practitioner: a close friend of mine does this, so if you want to PM me your area, I could possibly put you in touch with someone as he works with one of the best trainers in the UK. If not, just DIY, it will still help!

She should definitely see a good physio for some guidance on gentle exercise. Especially if they are qualified in yoga or pilates as well. Swimming is good, as has been said.

I would also say it might be worthwhile checking these people out- I have heard good things about them. Again, it might be pricy, but I would be looking into it if I had the spare cash...

My scoliosis is much milder than your poor dd's but I had physio which really helped. I would try to get a referral if you can.

I cannot advise about pain relief, but your dd might like to read my grandaughter's blog. She is 16 and undergoing surgery in just over a week.

She is writing about her experiences in a blog, at

www.bellabacklog.wordpress.com

Hi
My daughter is 14 and waiting for surgery. Two curves both over 55
After 2 years of being told she could only take paracetamol and ibuprofen and a brief encounter with co codamol which made her fall asleep in school- we saw a pain consultant privately - it was a breath of fresh air - he has advised most of her pain is due to muscle spasm-
This ties in with what the physio says - we are paying for weekly physio sessions which have helped her cope with the pain and have meant she has only had 1 day off school and has been able to continue with her sports - tennis hockey and swimming. Keeping active is key although the pain does mean it is not always possible

The pain consultant has recommended baclofen tablets and rectogesic gel to help with the spasms and associated headaches which have been increasing.
We have only been trying the new regime for 48 hours but so far so good - no painkillers needed so far. The consultant has listed 4 further steps which can be tried if the current regime doesn't work
It is very reassuring to have options available rather than being told by your gp and surgeon that paracetamol ibuprofen / co codamol are your only option
My daughter took these painkillers but stopped herself as she said they were making no difference whatsoever to her back and we're making her feel nauseous
I will post again in a week with an update but fingers crossed