Announcement

Collapse
No announcement yet.

Tears at school (brace blues)

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Tears at school (brace blues)

    Hi everybody,

    I have done some posts before and received great advice. I don't think there's any easy solution to this problem, but I'm sure many of you have had to cope with this one.

    My daughter Emma was diagnosed with scoliosis at 2 and braced about 6 months later. She was also recently diagnosed as being hemiplegic (a mild form of cerebral palsy, caused by a stroke at or before birth).
    She has to wear her brace for 15-23 hours per day, and it does seem to have stabilised the progression of her curve.

    Up until now she has tolerated her brace fairly well (moderate grumbling!), both at home and at nursery. Well she has just turned 5 yrs old and started primary school a month ago, and now I'm hearing the dreaded phrase "I want to be like all the other children", both me and the teachers are getting tears, complaints that it is "hurting", and constant pleas to "take it off". She told me that she hates wearing it at playtime because "it makes me stiff so I fall over easily" (which is probably true, when combined with the "hemi" factor). She has also started calling her right hand (the "hemi" affected one) her "naughty hand" , cos it flaps when she is excited or stressed (of course I told her that it is not a naughty hand, and that both her hands are "nice" hands).

    When she first got the brace, I explained about scoliosis by talking about the sunflower we were growing that needed "something to help it grow straight". We decorated the brace with stickers, made a "brace" for teddy etc. etc. I don't have Emma's x-rays, but I have drawn pictures to try and explain scoliosis as well.

    The school has been great, they have 4 or 5 other hemi kids (not braced) attending so the staff have had special training, they have all the right aids and adaptations (seats, toilets, handrails etc. etc.), the brace is removed for PE (as advised by our ortho).Given Emma's comments about the brace I don't think she would like doing "show and tell" with it.

    I ordered a storybook (from "Hemihelp") about a little girl who didn't like wearing her leg brace to school, but the text seems to be pitched at a slightly older age group (8-10 yrs).

    I've run out of ideas about how to explain her condition/s to her, and how to explain the importance of the brace. I just feel really down about the negative effect it's having on her self-esteem/morale.

    Emma did recently get a new brace, but it has been adjusted, she's wearing a special undervest and there's no sign of any chafing etc. So I think it is all about the "social" aspects.

    Any ideas about how to cope with this phase, and how to explain/boost her morale a bit?

    By the way I have now been told (by the neuro) that the hemiplegia is not responsible for the scoliosis and that it is an unrelated condition, in fact the doc at the genetics clinic(who did a physical exam on me) thinks that it may be related to the fact that me, my mother and sister are all "double-jointed" (they call it "loose-limbed"), said that this factor is genetic and can influence the development of infantile scoliosis in your children. Has anybody else ever heard mention of this theory before?

    Well sorry about the length of this posting, I think my own morale is at a bit of a low ebb at the moment, but any new ideas would really be appreciated.

    Thanks
    Kate

  • #2
    tough one, I must admit. You seem to have done all the things people tend to do. Whether or not others have more clever suggestions, in the end you'll have to accept that you are doing all you can, and in the words of "the bearhunt" "can't get over it, cannot get under it, need to get through it" (or something on those lines) which really means; "sorry Emma, i know you do not like it, I know it gets in the way, I know it might hurt, but this is the way it is and you just have to accept it". Once she realises she can get time out of brace by acting in a certain way, she will continue pushing you more and more for exceptions. This is so heartbreaking for yourself, I know, but what choice have you got ?? (apart from throwing the towel in altogether)

    One feels that in a way you need to divert the attention away from her condition and her brace (by taking the that is just the way it is attitude) so you can emphasise other aspects of her life more, and get enjoyment and fulfillment and selfesteem out of that. Conditions like this, which are so hard to ignore can take over so much and colout everything you are doing and thinking and experiencing, some how you need to move away from that.

    In that context, i note that you are feeling down about all this (so understandable) do make sure that you look after yourself, have time for yourself away from your problems, make sure you've got somebody to talk to, make sure you are not getting depressed (many in your situation would get depressed, i've been close to it at times, i'm sure)

    Just out of interest, how is her right side affected by the possible palsy, is she "floppy" (hypotonic) on that side or more "spastic" (hypertonic).??

    Also what direction is her curve and what level??

    Re causes of scoliosis; as it is nobody knows the real cause, and most likely it is multifactorial. It seems a bit incredible therefor that the neurologist dismissed a connection with the cerebral palsy out of hand, I am sure I have read there is a clear evidence of connection between neurologicle/ muscle disorders and scoliosis. Lax joints could well be another riskfactor, so if emma has inherited those from you, then that could play a role as well (my daughter has lax joints (like me), make her a good dancer, but also contributed to her scoliosis)

    Not sure whether any of above is helpful at all, not many bright idea's I must admit. Know how you feel though, keep goig and do look after yourself!!

    Comment


    • #3
      Hi,

      Thanks for the advice. I think you're right about staying "firm", Emma is a bright little girl and can be rather manipulative when it comes to her brace (though you can't blame her for trying!). Last week she had a slight cold, and was getting very hot with the extra brace and undervest layer, so for 2 days running her teacher removed it, so I think Emma was hoping that she could repeat this (with the help of some tears) this week. She nearly convinced her teacher to remove it again, but I've had a word with the teacher and warned her that Em is "testing her", so she's aware of the problem now. Anyway no tears today, so hopefully things have calmed down again.

      Re; Emma's condition. Last time it was measured Em had a curve of 45 degrees, curving to the right at the top of her spine (though it is "S" shaped). Unfortunately last time we went to the ortho the radiologist x-rayed her in her brace, so the ortho was unable to measure it again, but so far bracing seems to have kept the curve from progressing.
      With regards to her hemiplegia, the physio has described Emma as having "low muscle tone" (said she lacked the stiff muscle tone typical of spasticity), her right hand is weak and floppy, but waves and flaps when she is stressed or excited. She has to be encouraged to use it regularly, because she tends to "posture" or cradle it, which could cause muscle atrophy.

      I haven't really attempted to explain to Em about the hemiplegia yet, it's hard to simplify that for a 5 year old, anyway her main focus is on the "brace demon", so I have focussed on explaining about "scoliosis".

      She is supposed to be getting "growing rods" when she is 8. Can anyone tell me whether she will still need to wear a brace when they are in place?

      Kate

      Comment


      • #4
        Have you got any idea how flexible her curve still is?? I've got a bit a sense that the current approach is to hold her, with no expectation of any improvement through bracing. One just wonders, whether a different system, like the spinecor could make a difference. I know that i have to be a bit careful as I do not know enough of your circumstances, and for that matter I do not know enough of the spinecor neither, however, girls as young as 5 are being fitted with the spinecor, with quite a few successtories.

        It might well be that the kind of curve she has, and the associated circumstances make her unsuitable, but considering you have nothing to loose, you can always ask. Worst case scenario would be a trialfitting without any correction, so time and effort wasted, best case scenario would be a significant correction and a much more bearable/ wearable brace

        You could just write to Mr Mills, the orthotist and director of the spinecor manufucturing firm (and spinecor fitter in various hospitals) and explain your situation. email = info@spinecorporation.com

        what do you think??
        Last edited by gerbo; 10-04-2006, 05:49 AM.

        Comment


        • #5
          Spinecor

          Hi,

          I had seen the other postings about Spinecor, and it definitely sounds better than what Emma has now. You're right about the current brace, it is designed to "stop things getting worse" rather than improve.

          However I did have a look at the Spinecor website, and it seems to be designed for curves under 30 degrees. I also remember the ortho muttering (while examining her) about Emma's curve not being "correctable" by physical manipulation, which suggests it is not flexible. However I will contact the manafacturer for more info as you suggested, and will bring it up at our next ortho appointment.

          Thanks for the info!

          Kate

          Comment


          • #6
            i don't think i have any useful words to help, sadly, but i do think it sounds like you're doing an amazing job. the sunflower analogy is inspired, i think that's a brilliant explanation. it always impresses me how many parents manage to hold things together so well and do a great job for my kids. i know it's tough, but you all do really well.

            the only slight thing i can think of is perhaps take an opportunity to try as many different physical activities as possible, to keep her active, try and find something she enjoys and can do? my parents operated the principle when i was little (my scoli was diagnosed at 14 so it's irrespective of that) but they let me try all sorts of things until i found something i enjoyed and was good at which could be a treat and something to get me away from everything else (it ended up being horse riding, my dad claims it's typical that i picked an expensive hobby!)

            really good luck, i hope everything works out for you, though i am intrigued to know who is treating Emma and where
            diagnosed aged 14 (2001)
            braced from july 2001 to february 2003 to hold curves
            fused T11-L3 on july 16th 2005 (aged 18)
            Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
            scoliosis support forum

            Comment


            • #7
              After being shuffled around various (adult) orthos in local region, I got Emma onto the list of Mr Noordeen the paediatric ortho consultant at Great Ormond St Hospital for Sick Children in London. He was recently featured on a TV program about Harley St specialists, operating on a teenager with scoliosis, whilst humble surgeons clapped his "amazing work". It made me smile, cos I noted how genial, gentle and cheerful he was with his private patients, my comment to a friend "Hmm you don't get the bedside manner on the NHS!"

              In fact the majority of the time Em is seen by one of "his team". But still I'm not complaining cos he will be the one doing the "rods op" and the "fusion" when she is a teen, and reading the posts on this site I'm thankful for the NHS, cos it must be so difficult for parents in the US, having all the worries about their child....and to have all the additional financial worries about funding the treatment on top of that.

              Emma actually tried horse riding (on a miniature pony) 18 months ago when we were on hols. She loved it! I checked out "Riding for the disabled" Org, the nearest centre is not far way, but it is out on Dartmoor...and I don't drive. But I am taking driving lessons, so hopefully we'll be able to follow up on that eventually. I take her swimming regularly (or wading in her case, cos she doesn't like getting wet above the waist!) . she's also currently "in lurve" with her 13yr old cousin, and he's working on her "football skills".

              I noted you had the fusion op when you were in your teens, did you have to wear the brace at all afterwards?

              Kate

              Comment


              • #8
                that's great she's under mr noordeen, i know at least one person who's had surgery done by him and by all accounts he's very good

                and i'm always pleased to hear of young kids getting into riding, i'm a huge advocate for it in terms of motor and social skills, because particularly as a small child in braces, i think it'd really help her balance.

                i didn't have to wear a post op brace, in the UK that seems to be very much what the surgeon prefers (and what they feel is right for each patient). i know several people with the same surgeon as me and his prescription has varied widely between us all. to be perfectly honest though, a post op brace in many cases is not something a patient worries overly about when they get to that point: you get more irritated by restrictions and so on (which is easy to say when i wasn't braced after surgery). the other positive with a post op brace is a comfort thing: those of us who haven't had braces often agree that we would've liked one to feel "protected" the first few times we wandered into the outside world. supermarkets are terrifying places when you look pretty healthy and are terrified of someone ramming a trolley into you and you having to go straight back to theatre.
                diagnosed aged 14 (2001)
                braced from july 2001 to february 2003 to hold curves
                fused T11-L3 on july 16th 2005 (aged 18)
                Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
                scoliosis support forum

                Comment

                Working...
                X