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Nicki
27th August 2005, 09:56 PM
Hi there, my name is Nicki any my 9 year old daughter Lucy has scoliosis. She was diagnosed in 2003 aged 6 and a half. We were it seems very lucky as our GP referred us to our local hospital for x rays. We were seen by a consultant who, because of Lucy's young age and the direction of the curve, recommended she have an MRI scan to eliminate any serious underlying problems. Thankfully this came back as negative and we were told that she had idiopathic scoliosis. We were told that she would be monitored every 6 months to keep an eye on the curve.

Early this year Lucy complained of back twinges and I had noticed that the bump on her rib cage seemed larger so we went back to the consultant, he x rayed Lucy again and confirmed that the curve had progressed significantly. We were referred to Nuffield Orthopedic Hospital in Oxford. Here Lucy was x rayed again and we were told that she would need to wear a Boston Brace, this would be 23 hours a day untill she stopped growing. This was devestating and Lucy was very upset, as were her dad and I. Lucy was measured for the brace, an experience she is not in a hurry to repeat!! and she started wearing in at the end of July.

Lucy has been amazing, before we went on holiday (we returned today!) 8) we had got to 10-12 hours a day of brace wearing. This has gone to the wall a bit as it was very hard on holiday as she were on the beach all day and partying the night away!! So far the brace has not stopped Lucy from doing any of the things she enjoys, she had to practice a bit on her bike getting her balance and her dad had to fiddle about with the seat a bit. We have been so proud of the way she has adjusted to wearing it (granted she is not in it 23 hours a day yet) she has not complained and understands that this is necessary to stop the progression of the curve (hopefully).

We are due to go back to see the consultant in late September, and hopefully we will have acheived 23 hours a day wearing it.

We have informed Lucy's school and so far they have been fantastic. I have discussed with Lucy speaking to her class to tell them all about the brace. What it looks like, why she is wearing it etc. This I hope will take away the mystery and therefore, hopefully, it will be accepted as just part of Lucy.

Phew...! that is our story so far, if anyone reading this has any advice to offer I would be very grateful. :angel:

BeckyH
27th August 2005, 10:03 PM
wow sounds like you're doing a fantastic job! though i'm not really one to judge (i'm becky, i'm 18 and today i'm 6 weeks post op, i had surgery because my curve wasn't caught young enough to be "cured" by bracing)

i'm sure you'll find all the help and support you need here, there are fantastic people around with a wealth of knowledge to willingly share

lucy sounds like she has a great attitude. i was given a brace at 14 and had to wear it 16 hours a day because it was mainly to hold my curve, not correct it, so i didn't have to wear it at school and kept things a secret from my friends (perhaps not such a great idea in the long run, i needed them this summer, and they did rally round)

so if you have any questions etc feel free to ask!

sins
27th August 2005, 10:13 PM
Hi Nicki and welcome,
there's quite a few Nuffield patients here and also some very helpful parents who have children in braces as well.if there's any questions you need to ask such as what to wear under braces or how to cope with the whole hospital experience, you've come to the right place.
Hope you like it here.
Sins

tonibunny
27th August 2005, 10:31 PM
Welcome Nicki! I am 30 years old and also had infantile scoliosis. I was diagnosed as a baby and wore braces and plaster casts for 23 hours a day throughout my childhood until I had surgery when I was ten. It really does sound like Lucy's doing brilliantly in her brace, and it's great to hear that she's continuing to do the things she enjoys :D She sounds like a very mature little girl :D

I can't really add anything else to what Sins and Marmyte have said above, except that - as you probably know - it's really very important that you and Lucy are strict with her brace-wearing. I had considerably large curves as a baby, which had a lot of potential to get worse, but 23 hours of bracing a day kept them stable for years.

Anyway, it's great to have you here, and I hope you stick around!

*hugs*

Toni xx

Nicki
27th August 2005, 10:44 PM
Thanks for the welcomes!! I am very new to using forums, I am feeling my way around!! :D This site was recommended to me and it is fantastic, there is so much going on!

I will keep you informed on Lucy's progress.

Amazed Jean
28th August 2005, 02:49 AM
Hello Nicki,
Welcome to our family. There are lots of us here and we are always ready to listen. You are doing a good thing by being up front with your daughter. Ask lots of questions of the physicians and keep a notebook to write stuff down.

andrea
28th August 2005, 10:29 AM
Hi Nicki and welcome to SSO! I'm Andrea, mum to Erin who turned 3 on Thursday (party is today, which I should really be preparing for, but instead I'm here - oops). Erin has infantile scoliosis, which was diagnosed when she was 1. She has been in a cast since then, although switched to a brace for the summer in early July. Because Erin had been used to a cast, I didn't need to build up to her wearing it 23 hours a day - I can only imagine how difficult this is. It sounds like you are both doing really well with wearing it though and i'm sure you'll soon be up to 23.

Lucy sounds like she is handling it very well and being very mature about it, which I'm sure is partly down to the way you've handled it too. Do you know Lucy's curve/s?

As the others have said, feel free to ask questions (or vent, if you want to do that too - we all have days like that).

Great to see you here.
Andrea
x

Sealy
28th August 2005, 02:30 PM
OMG I missed wishing Erin a happy birthday :woe: I don't often go in the SSO common room. I hope she has a wonderful birthday party today, I've been so wrapped up with the upcoming appointment with Dr. Rivard. I've been busy looking up attractions and things to do with the kids when we're in Montreal. Give Erin a BIG HUG from me :hb:

Hi Nicki :welcome:

let us know how Lucy adjusts to the brace.





Sealy

Lizzie89
28th August 2005, 02:43 PM
:welcome: Nicki
Im Lizzie, im 15 and i just had surgery 11 weeks ago
I hope you continue to find us useful :-D

All the best

Nicki
28th August 2005, 10:50 PM
Hi Andrea, Thanks for the reply, hope that Erin's party went well. I am not sure of the degree of Lucy's curve, it is a question on my list to ask at our next visit to Oxford at the end of September.

Thanks to amazed for the advice regarding the notebook, I will be sure to take one when I next go.

Does anyone know whether Lucy will need any physio whilst she is wearing her brace? When we collected it I asked the Orthotics doctor and she suggested I ask to see the physiotherapist when we next go to see the consultant in September, but she was very vague about it. I wondered if anyone who has either worn a brace or whos child has, had any advice. :???:

I have a feeling that I am going to be spending a lot of time on this site!! I think it is excellent and it is lovely that so many people have welcomed me - Thank you. It is so nice to have found somewhere to chat to other people who have been touched by scoliosis. I had never heard of it until Lucy was diagnosed, but so many people I have spoken to have said "my friend/cousin/friend of a friend etc has got scoliosis"!!

Today was Lucy's first full day in the brace since our holiday and she managed 12 hours straight off. :D She has been to the park, on her bike and blackberry picking all day - there is no holding her back!!

I will be back.....!

Nicki xx

Sootyca
28th August 2005, 11:03 PM
Hi Nicki,

I can't offer help or advice I'm afraid - I was only recently diagnosed as having Scoliosis and I'm nearly 30! This is despite having it apparently for years according to my x-rays, no-one has ever noticed. I think this is a good thing. :)

Just wanted to add my welcomes to everyone elses. As another recent newcomer to the site, everyone is very friendly and can offer lots of helpful advice to you.

Best wishes,

Karen
x

BeckyH
29th August 2005, 05:04 PM
i don't have any experience of scoliosis in children (i was diagnosed as an adolescent and wore a brace from when i was 14 until i was almost 16) my surgeon never recommended physio, and only told me i'd need it after surgery (i'm not saying lucy will need surgery, it was always the way i was headed due to when i was diagnosed) so i'm not sure she'll need physio but then i may not be the person to respond to that!

again, it sounds like lucy has a very positive mental attitude and i hope it continues and that you can communicate with her about scoliosis (i was very quiet about mine until earlier this year when i really got interested)

Jules
29th August 2005, 06:50 PM
Hi and :welcome:

I'm Jules and I'm 16, I had surgery last year at the Nuffiled Orthapedic Centre in Oxford for a curve just over 50 degrees. Who is your daughters consultant?

I hope we can give you all the support you need here, it really is a great place, and I agree your daughter sounds like she does have a very good positive mental attitude towards the bracing.

Love Jules xxx

newgirl
29th August 2005, 08:04 PM
Hi Nicki
Welcome to SSO. My al,ost 2 year old daughter has infantile scoliosis officially diagnosed at 9 months old. She is currently in a brace but will be going into a plaster cast in a few weeks time we think. Lucy sounds like she is doing really well, I think it must be a bit more difficult when kids get that bit older to keep them in the brace but it sounds like you are doing a great job.
It is no harm to ask about the physio referral at your next appointment, we have not been referred for physio, but Nuffield may have different procedures.
Keep in touch
Nicola

RosieRich
29th August 2005, 09:22 PM
Hi Nicki
My daughter Megan is also 9 with scoliosis and at the nuffield oxford. She was only diagnosed at the beginning of the year though with 2 curves of 31/21. She has been in a brace since june and adapted remarkable well. A hint for the nights- we bought a bed topper and with the aid of extra pillows Megan slept right through straight away. We have found lots of good advice on this site- including what to wear under the brace (thanks everbody).
We asked about physio too and were told the same thing as you- ask at our next consultant appointment, which isn't until october. The orthotist has been great and made a good job of the brace although one of our worries is they don't X-ray in the brace so we don't know how much correction there is.
Who is your consultant? We are under Mr Gavin Bowden but have only seen the registra so far. Mr Bowden seems to be very elusive so far, despite lots of phone calls we still haven't recieved his MRI report from the beginning of May! Let us know how you fare.
Megan did her own research on scoliosis which she took into school to do a show and tell. This really helped and all her class mates have been great. It sounds like you are all the right things.
Keep us posted on how Lucy is doing.
All the best. :niceone:

DublinPauline
29th August 2005, 09:34 PM
Welcome to SSO Nicki.
I love in Dublin and have congenital scoliosis which was diagnosed when I was two.
I wore a Milwaukee Brace 24 hours a day from the age of 10 to 12 (don't ask why treatment started at that age - medical system :evil:) and it held back the progress of a very severe curve until a spinal fusion was done when I was 13. That was in 1979. :oops:

Nicki
18th September 2005, 10:32 PM
Hi there everyone,

I have been a bit busy lately - back to school/brownies/rainbows/swimming/childrens parties etc etc :D All you mums out there will know what I mean!!

Well Lucy has achieved 23 hours! :clap: :clap: :clap: We are soooo proud of her. She is doing really well, the only time the brace comes off is for her daily shower, PE at school and swimming lessons.

Lucy is back at school and all of my husband Glenn and my worries (about school) have all but disappeared. I met with her teacher recently who said that Lucy was coping fantasticly well and apart from it digging in the tops of her legs when sitting for any length of time there were no probs at all. Lucy is chuffed to bits to be the only child in the class to be allowed in 'miss's' cupboard to change for PE!! :D

Thanks for the advice ROSIERICH about the bed topper, Lucy has been sleeping like a baby with the aid of a 'v' shaped pillow as well as her normal one. Did you find it amazing how easily they have settled into wearing their braces?

Our consultant is Mr Fairbanks, like you we have yet to meet him!! We have seen the registrar. We are due back on 26 September for our next consultant meeting. I am already fretting about whether we will get a parking space at Nuffield and what time to leave to enable us to drive around the car park until one becomes available!! :-x

Will let you all know how our hospital visit went.

Bye for now,

Nicki

jfkimberly
19th September 2005, 11:07 AM
Is there some way she could boost her seat higher at school, so her legs aren't at a 90degree angle from her body? That might reduce some of the pressure of the brace digging into the tops of her thighs. I'm not sure how to describe what I mean... I hope you can picture it.

andrea
19th September 2005, 12:45 PM
Hi Nicki

Nice to see you back, and I know what you mean about getting back into the swing of things (and Erin has yet to start school!). It's great that Lucy has adjusted so well to wearing the brace - well done her!!

If the digging in becomes a problem, i'd contact the orthotics department at the hospital and go back for a trimming - they should be able to do this for you while you're there and fairly quickly. Kim's suggestion should work too, if you can find something that lifts her up.

Glad to hear things are going well for you. Do you know what the curve is in the brace? Good luck on the 26th.

Andrea

RosieRich
19th September 2005, 10:15 PM
Hello again
That's great news to hear Lucy has adapted so well. What colour brace did she go for? Megan chose one of the brightest patterns there and she wears it openly when it's hot.
To update you on our consultant we managed to arrange a meeting with him when we were at the Nuffield for a brace check. He was in the middle of a clinic but still came out to speak to us for a good 45 minutes. He was very appologetic for not replying to us and managed to answer all our questions and explained the scoliosis. Unfortunately Megan has a 60-70% chance that she will need an operation but after talking to him we were a lot happier that everything was being done to prevent this. She now doesn't need to go back until January.
The orthotist should be able to flair out the offending bit of the brace. I found you have to push a bit for follow up appointments. there never seems to be enough spaces in the clinics. As for parking we've been lucky enough to have very early appointments or later when there have been some spaces.
Good luck for the 26th. 8)

RosieRich
19th September 2005, 10:20 PM
PS
If you can't park, directly opposite the main entrance is a housing estate. 2 streets back, past the school is free on street parking. Just allow 5-10 mins extra to walk.

Jules
20th September 2005, 04:26 PM
Originally posted by Nicki@Sep 18 2005, 09:32 PM





Our consultant is Mr Fairbanks, like you we have yet to meet him!! We have seen the registrar. We are due back on 26 September for our next consultant meeting. I am already fretting about whether we will get a parking space at Nuffield and what time to leave to enable us to drive around the car park until one becomes available!! :-x



Bye for now,

Nicki
ooo thats my consultant too! Sorry I can't help with the parking my appointments with him are always at St.Lukes rather than the Nuffield although I did have surgery there but I can't remember much about where my parents parked sorry.

I hope all goes well in the appointment.

Love Jules xxx

Nicki
22nd September 2005, 05:09 PM
Hi there,

Thanks for the advice Rosie on parking, we looked once before but only found permit holder places, we will defo look for the place you mentioned.

Lucy chose a white brace, at the time she was paronoid about anyone seeing it, or even knowing about it. She decided that white was less likely to show through her clothes. She did say that she would choose a patterned one for the winter when she is wearing jumpers!!

I met again with her teacher yesturday who reiterated how well she is doing and said that she gets up and has a walk when it gets uncomfortable. She also said that she thought that wearing the brace had give Lucy extra confidence - which surprised me. Her theory was that Lucy now feels that she is special (she always was to us!!) because she wears the brace and so her confidence levels have increased - which was fantastic to hear. She also said that Lucy's attitude to the brace is "hey! I wear a brace because I need one for my back - so what!!" which was music to my ears. We have tried to encourage her to proud of it not ashamed, and it seems to be working as apparently she will show it off to anyone who asks!!!!

I will be asking to what degree her curve was before the brace and if possible what degree it is in the brace when we go on Monday. I dont know if she will have to have an operation eventually, we did ask but were told it was difficult to say as it depends on how the curve changes as she grows. Sorry to hear that Megan has a high chance of surgery, I imagine you just hope - like I do - that the brace will hold the curve and when she stops growing it will stop progressing.

It is great the Megan is so proud of her brace - she sounds a lovely little girl. Lucy was interested to know that there was another girl the same age as her in a brace as well. I will let her read about Megans brightly coloured brace and how she goes topless in it!!

Bye for now!!

NickiXX

Nicki
22nd September 2005, 05:16 PM
Originally posted by jfkimberly@Sep 19 2005, 10:07 AM
Is there some way she could boost her seat higher at school, so her legs aren't at a 90degree angle from her body? That might reduce some of the pressure of the brace digging into the tops of her thighs. I'm not sure how to describe what I mean... I hope you can picture it.


We did give Lucy a cushion to take to school, but she didnt want it. I also saw a wedge shaped cushion in one of the daily papers that looked interesting, but Im not so sure she would use it - even though she would be more comfortable!. I think that she likes to get up and have a walk - when she should be working! :D

Nicki
22nd September 2005, 05:21 PM
Originally posted by andrea@Sep 19 2005, 11:45 AM
If the digging in becomes a problem, i'd contact the orthotics department at the hospital and go back for a trimming - they should be able to do this for you while you're there and fairly quickly.
Hi Andrea,

When Lucy was fitted with the brace they did trim off some and flared it up a bit at the leg, but when I asked for more to be taken off she said No!!! She said that if she took off too much to effectivness of the brace would be reduced, so we just accepted her word - like you do on your first visit!! I will be mentioning it again when we eventually get a follow up appointment - something I will be chasing on Monday!

I dont think it is too much of a problem as Lucy has never actually mentioned it to us herself, but if there is anyway they can shave a bit off it is worth a try.

Bye for now

Nicki X

newgirl
22nd September 2005, 09:51 PM
Hi Nicki,
It is great to hear that Lucy is coping so well with the brace.
If they cannot trim the bottom where it is digging in ask them to put some padding on the ends so it does not dig into her so much.
Good luck with the appointment, don't forget to make a list of all your questions.
Nicola