Scoliosis testing in schools in UK

[tina_emma_megan]

My daughter Emma is 11 years old and last March underwent corrective
scoliosis (curvature of the spine)surgery for an S curve of 80 degrees and 70 degrees which had been diagnosed the previous March. After a traumatic time, physically and mentally, she is now doing very well and has gained in confidence as well as height. She has started a petition to try and get schools in the UK to test children for scoliosis to try and detect the problem
before it gets to the need for surgery. The doctor has said that Emma
has probably had scoliosis for the past 5 or 6 years and if she had
done the forward bend test it could have been diagnosed earlier. Her
sister who is 6 has now been diagnosed with scoliosis, although mild
they are keeping an eye on it to see if it progresses like Emma's.
Emma would much appreciate if everyone could take a couple of minutes
out of their time to sign her petition which she intends to give to the
Prime Minister to raise this awareness. The petition can be found at
thepetitionsite.com/1/start-testing-for-scoliosis-in-schools

Many thanks and a Happy and Healthy New Year to all. Christine, Emma and Megan

[rtremb]

I signed Emma's petition - I am a British citizen. It is so great that she is doing this. Please let her know I think she is doing a great thing.

Ruth

[Neesasmum]

I agree with Emma wholeheartedly regarding the scoliosis screening and have just signed her petition. We live in the UK and my lovely 14 year old daughter is due to have her spinal fusion on 7th Feb 2008. I wish there had been a screening programme so that it might have been picked up earlier on. Keep up the good work Emma!

[tina_emma_megan]

Best wishes

I agree with Emma wholeheartedly regarding the scoliosis screening and have just signed her petition. We live in the UK and my lovely 14 year old daughter is due to have her spinal fusion on 7th Feb 2008. I wish there had been a screening programme so that it might have been picked up earlier on. Keep up the good work Emma!

Good luck and all our best wishes to both you and your daughter for 7th Feb. Here's to a speedy recovery and to a bright future with a straight back. She will be able to walk tall. It's amazing what a difference it makes - not only in height but in confidence.

[Pooka1]

I agree with Emma wholeheartedly regarding the scoliosis screening and have just signed her petition. We live in the UK and my lovely 14 year old daughter is due to have her spinal fusion on 7th Feb 2008. I wish there had been a screening programme so that it might have been picked up earlier on. Keep up the good work Emma!

Good luck with the fusion.

My one twin daughter is going to get the surgery this spring and the other twin is going to be braced although she will likely need the surgery also. They are 13. I am investigating the minimally invasive surgery for S and the VBS for W and possibly S.

Please don't beat yourself up about not finding out about it sooner. Based on my cursory review of the literature so far and the posts on this board at least, it's not clear bracing effectively avoids surgery. I'm unclear about whether it works to delay it significantly but perhaps it can do that.

A doctor who takes a wait and see approach is not totally out to lunch and I think there exists a large percentage of doctors do not believe bracing is effective in many cases. And if it were me, I would forgo the bracing and just get the surgery. I thank my lucky stars there is even successful surgery available for this condition.

Again, good luck.

sharon

[Esa]

I don't know how well it's worked for others but I really feel bracing has helped my daughter. Jasmine now 8 was diagnosed at 1, and has been braced since. She's had 2 series of casts (once when she was 3 y.o. and once just last year at 7 y.o.) I don't remember exactly her degrees when she was diagnosed, but right now she's up to 47 thoracic and 32 lumbar. I believe (and I realize I could be wrong) that if we wouldn't have been bracing and casting her all this time she would be much worse. Her curves have gotten as high as 58 thoracic and 40 lumbar, but when they've gotten that high we cast and have a new brace made, and the curves go back down at least for a time. Although bracing has been difficult, it's been worth it for us, especially since she was diagnosed so young. Now that she's getting older I'm looking into the possibility of VBS for her so she won't have to go through junior high school with a brace, but mostly because I hope it'd decrease her chances of having to get fused. Don't know if that helps at least a little, in knowing that it's worked at least to a certain degree (that could be taken as a REALLY bad pun! ) for Jasmine.

[Neesasmum]

Hi Christine

Good luck and all our best wishes to both you and your daughter for 7th Feb. Here's to a speedy recovery and to a bright future with a straight back. She will be able to walk tall. It's amazing what a difference it makes - not only in height but in confidence.

Hi Christine

Thank you so much for your kind words and thoughts. They mean a lot to me. I am very glad to hear that Emma is doing so well after all that she has been through. Our children are very brave and I wish we could do it all for them. Hopefully Megan's scoliosis will remain mild and she will not have to go through a fusion op. It must be quite a worry for you.

Since Annessa was diagnosed with scoliosis it seems to have taken over my life and I am very grateful to this forum as it full of lovely, informative people who are in the same boat and it really helps to talk.

Annessa is apprehensive about it all but wants to have this op as she doesn't like the way her back looks. Her curve was 52 degrees in October but we both think it has gotten worse since then. I am finding the run-up to the op next week is a roller coaster ride of emotions but we will get there!

Take good care and once again thank you for your kind words.
Anne

[Neesasmum]

Hi Sharon

Good luck with the fusion.

My one twin daughter is going to get the surgery this spring and the other twin is going to be braced although she will likely need the surgery also. They are 13. I am investigating the minimally invasive surgery for S and the VBS for W and possibly S.

Please don't beat yourself up about not finding out about it sooner. Based on my cursory review of the literature so far and the posts on this board at least, it's not clear bracing effectively avoids surgery. I'm unclear about whether it works to delay it significantly but perhaps it can do that.

A doctor who takes a wait and see approach is not totally out to lunch and I think there exists a large percentage of doctors do not believe bracing is effective in many cases. And if it were me, I would forgo the bracing and just get the surgery. I thank my lucky stars there is even successful surgery available for this condition.

Again, good luck.

sharon

Hi Sharon

Thank you for your reply - it made me feel a lot better as I do tend to "beat myself up" for not seeing what was happening with Annessa's back sooner! Even though I am scared, I too, am thankful that there is such a thing as spinal fusion and often think how awful it would have been if we were going through this in past decades.

You seem to have done your homework Sharon and are investigating the best route to take for each one of your daughters, S and W. You sound a great mum to have!

I'll look forward to hearing how S and W get on and you are all in my thoughts.

Lots of luck and the very best of wishes to you all.
Anne

[Pooka1]

I don't know how well it's worked for others but I really feel bracing has helped my daughter. Jasmine now 8 was diagnosed at 1, and has been braced since. She's had 2 series of casts (once when she was 3 y.o. and once just last year at 7 y.o.) I don't remember exactly her degrees when she was diagnosed, but right now she's up to 47 thoracic and 32 lumbar. I believe (and I realize I could be wrong) that if we wouldn't have been bracing and casting her all this time she would be much worse. Her curves have gotten as high as 58 thoracic and 40 lumbar, but when they've gotten that high we cast and have a new brace made, and the curves go back down at least for a time. Although bracing has been difficult, it's been worth it for us, especially since she was diagnosed so young. Now that she's getting older I'm looking into the possibility of VBS for her so she won't have to go through junior high school with a brace, but mostly because I hope it'd decrease her chances of having to get fused. Don't know if that helps at least a little, in knowing that it's worked at least to a certain degree (that could be taken as a REALLY bad pun! ) for Jasmine.

Oh, I wasn't clear. My remarks were in reference to adolescent idiopathic scoliosis (AIS). Based on the age your daughter was diagnosed, she has another type. My reading so far has focussed in like a laser on just AIS because that's what I'm dealing with.

In infants and juveniles, I understand the need to correct the spine without fusion and the need for heroic measures to avoid fusion to allow for normal growth. I hope the bracing works for these children.

What I'm not convinced of is that bracing works in AIS in the long term. In the case of my girls, they are both about 5' 9" and scheduled to be about 6' (doubling their height at 18 months). If spinal fusion will stop their growth now, that would be just ducky. But I think their legs will continue to grow through their teens so I'm not so sure we can count on fusion to stop their growth.

Good luck with your daughter.

Best regards,
sharon

[Snoopy]

Christine,

Did your children's family doctor or pediatrician ever do a forward bending test on either of your daughters? The reason I ask is that had her doctor routinely done Scoliosis screenings at their yearly check ups, Emma might have been diagnosed much earlier.

In the US, at least at our family doctor's office, my daughters have had the forward bending test done at least yearly since they were 5 or 6 years old. That's how at the age of 12 my daughter was diagnosed. In our school district, our kids aren't checked in school until 7th grade.

I strongly agree that all kids need to be screened in school. I'm not sure at what age they should start, but I feel they should be screened at least yearly from Middle School through High School.

Mary Lou

[tina_emma_megan]

Christine,

Did your children's family doctor or pediatrician ever do a forward bending test on either of your daughters? The reason I ask is that had her doctor routinely done Scoliosis screenings at their yearly check ups, Emma might have been diagnosed much earlier.

In the US, at least at our family doctor's office, my daughters have had the forward bending test done at least yearly since they were 5 or 6 years old. That's how at the age of 12 my daughter was diagnosed. In our school district, our kids aren't checked in school until 7th grade.

I strongly agree that all kids need to be screened in school. I'm not sure at what age they should start, but I feel they should be screened at least yearly from Middle School through High School.

Mary Lou

Hi Mary Lou

Sadly, in the UK the GPs and paediatricians I have come across do not routinely check for scoliosis. It was only after Emma was diagnosed that I scrutinised my other daughter Megan's back for signs of any curves. I did not spot a curve but noticed Megan's shoulders were not aligned. I mentioned it at Emma's next appointment and they checked Megan out then and found a mild scoliosis. Because they believe Emma's was there from about the age of 5 they are now keeping an eye on Megan to see if her curve progresses the same. Megan regularly sees a paediatrician for other health problems but has never been checked for scoliosis.
I believe so stronly in testing in school and I think it should start from about the age of 6 years. Even if eventually the child needs surgery the longer they have to come to terms with that the better. Emma would have been emotionally better able to cope if she had more time to get used to the idea.
Best wishes to you and your daughter.
Christine

[carolad]

Hi Mary Lou

Sadly, in the UK the GPs and paediatricians I have come across do not routinely check for scoliosis.

This is such an oversight, isn't it, since it is so important this is caught on as early as possible. My experience of my own GP (also in the UK) is that he is completely clueless about scoliosis! I was diagnosed recently with scoliosis at the age of 38 (don't know the curves, but from seeing the xrays I would say it falls into the 'mild' category) by a chiropractor. Once I found this out, I went to my GP and told him what was wrong with me - I had been to my GP previously about back pain, and all he had done was prescribe anti-inflammatories.

The GP didn't make any comment about it at all and didn't even examine me. He did send me for xrays, but unfortunately that was a waste of time, because he asked for one of the very base of my spine (lying down) and one of the right side of my pelvis (with me lying on my side). So the xrays came back showing nothing was wrong - what a surprise! Even when I went back to my GP and told him the xray needs to be taken with me standing to show the curve, that one leg is longer than the other, pelvis is tilted etc - all he said was 'why do you have one leg longer than the other - did you break it at any stage?' Aaargh!! Stupid man!!

I know GPs aren't going to be experts in scoliosis, but you would expect them to know the basics and to have the wit to refer you on to someone who does understand.... I've decided I'm just going to have to go back to him and demand to speak to someone who knows about scoliosis, and if that doesn't work, I'll be changing my GP.

Sorry, that turned into a bit of a rant! I'm sure there are some good GPs out there, and the petition has to be a good idea to try to highlight this problem as early as possible. Good for Emma for trying to help others in the same position - she sounds like a very special little girl

[Snoopy]

Wow, I thought the health care system in the US was screwed up!


Mary Lou

[carolad]

Wow, I thought the health care system in the US was screwed up!


Mary Lou

Well, yes. At least our system is free but it certainly has its faults! I do get the impression that UK GPs generally aren't as clued up about scoliosis, but I'm sure my experience is an extreme example. Not so important in my case, as I'm assuming my curves are unlikely to progress much, but it does worry me that there are probably lots of children not being diagnosed early enough because there are GPs like mine who haven't a clue...

[marmyte]

Wow, I thought the health care system in the US was screwed up!


Mary Lou

carolad is right, the problem in the UK is awareness. a huge number of GPs don't know what scoliosis is or where to refer people, it's such pot luck. and awareness among the general public isn't much better.

my mum knew about it because when i was 5 at my pre school medical the nurse asked me to bend over and checked for it, and mum asked why she did that.

however, mum didn't find out any more so didn't know that it's wise to check kids periodically. i don't think i'd have been diagnosed much sooner even if she had known, but obviously for some kids it would make a difference.

i think i remember my mum telling me that pre school medicals either never have been or are no longer mandatory, plus i imagine the nurse who checked me for scoliosis would be in the minority.