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Thread: update on Frankie

  1. #1
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    Default update on Frankie

    Hi all had our appointment with spinal team at RVI today and new xray show curve has progressed since last one in Feb. She actually has 3 curves, main one is thoracic and measured 47 degrees today, her lumbar curve measured 36 and her cervical was 28. They have decided that due to the progression and the fact that curves associated with neurofibromatosis can progress rapidly they will cast her in order to hold off surgery. But she will probably need surgery at some point in the future. She also has a rotation in the thoracic area and her spine dips towards her chest there quite a lot too. the cast will be done in the next 2 weeks. She has already decided she wants pink. has anyone else had experience of casting a 5 year old? how did they take to it?

    X-ray of F's corrected curve. Diagnosed Feb 2012 41 degrees. Upon casting july 2012 curve had progressed to 47 degrees with compensatory curves of 28 above and 36 below. Due to have magnetic rods inserted in April as Main curve has reached 58 degrees and compensatory curves over 40. Didn't have MAGEC rods in the end as has possibility of MRI's in the future due to having NF1. So she has sliding growth rods along the lines of Davies Dominoes, they haven't slid on there own so having 6 monthly lengthenings.

  2. #2
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    Default Re: update on Frankie

    Sorry to hear about Frankie. I have no experience of casting or juvenile/infantile cases myself but seeing as she was happy to choose a colour it sounds like she's not taking it too badly.

    Tiff x
    I'm Tiff, I'm 17, my consultant's Mr Gibson at RNOH Stanmore and I was diagnosed in November 2011 and I had my spinal fusion October 3rd 2012 and am now fused T2-T11 with amazing correction (60T/40L to 30T/40L).

  3. #3
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    Default Re: update on Frankie

    Sending major hugs. Wishing things were better for you now.
    I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.

  4. #4
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    Default Re: update on Frankie

    I'm sorry to hear the curve has progressed. My daughter wasn't in a cast at 5 as she was coming to the end of her casting by then, but children adapt remarkably well to them and I think she'll surprise you. She may have to learn to do some things differently, but she'll work it out and there'll be no looking back.

    Good luck x
    Mum to Erin, 10, diagnosed with 62 degree curve in May 04, aged 21 months. Serial casting '04-'07. Growth rods inserted June '08 under Mr Tucker at RNOH, Stanmore, UK. Surgery October '11 to replace a broken rod.

  5. #5
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    Default Re: update on Frankie

    Poor mite, I hope everything works out OK for her and she can avoid surgery
    Me, a Mod? Nah ... I'll always be a rocker

  6. #6
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    Mar 2012
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    Default Re: update on Frankie

    Thanks all for your replies. Here's hoping the casting works. She has started asking me lots of questions now about casts and why she needs to be asleep when they put it on. Think she's worrying about it...bless her.

    X-ray of F's corrected curve. Diagnosed Feb 2012 41 degrees. Upon casting july 2012 curve had progressed to 47 degrees with compensatory curves of 28 above and 36 below. Due to have magnetic rods inserted in April as Main curve has reached 58 degrees and compensatory curves over 40. Didn't have MAGEC rods in the end as has possibility of MRI's in the future due to having NF1. So she has sliding growth rods along the lines of Davies Dominoes, they haven't slid on there own so having 6 monthly lengthenings.

  7. #7
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    tonibunny is offline T Sr: Admin, Big Sister and Da Police!
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    Default Re: update on Frankie

    Hi there, I wore casts from the age of six months until I was ten years old, though I did wear Mikwaukee braces at times during the summer months. I'm afraid I can't really offer advice though as I grew up wearing them so never knew any different. They shouldn't be uncomfortable, though they can feel really hot during warm weather, so those cooling pads that you can get in Boots are useful, as are handheld fans.
    37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.

  8. #8
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    Default Re: update on Frankie

    we have no experience with casts, just wanted to send hugs your way!

    Andi S

  9. #9
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    Mar 2012
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    Default Re: update on Frankie

    Thanks all, Frankie goes in on Tuesday for her cast and stays overnight. Will let you know how it all goes.

    X-ray of F's corrected curve. Diagnosed Feb 2012 41 degrees. Upon casting july 2012 curve had progressed to 47 degrees with compensatory curves of 28 above and 36 below. Due to have magnetic rods inserted in April as Main curve has reached 58 degrees and compensatory curves over 40. Didn't have MAGEC rods in the end as has possibility of MRI's in the future due to having NF1. So she has sliding growth rods along the lines of Davies Dominoes, they haven't slid on there own so having 6 monthly lengthenings.

  10. #10
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    Jun 2011
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    Default Re: update on Frankie

    my 3 year old daughter sophie has been in casts for 10 months now..tbh her casts never bothered her much and the casts dont stop her doing anything..hot weather is a problem but i wouldnt worry about that with the bad weather we are getting this summer..generally kids adapt and get on with life they leave the worrying to the adults,hope things go well for you.

  11. #11
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    Default Re: update on Frankie

    Hi Andytyke, it's good to hear of slightly older childern not being bothered by casts when they have started casting older than infants. That's my main worry with my daughter as she is 5 years old and I am concerned how she will tolerate it. How do you find washing and washing hair for your daughter. My little girl sweats so much at night I am worried she will end up a bit smelly...lol. I'm sure there must be a knack to washing them once you're used to doing it.

    Have you seen any reduction or stabalisation with the curve since you began casting? Hope it's working for you little girl x

    X-ray of F's corrected curve. Diagnosed Feb 2012 41 degrees. Upon casting july 2012 curve had progressed to 47 degrees with compensatory curves of 28 above and 36 below. Due to have magnetic rods inserted in April as Main curve has reached 58 degrees and compensatory curves over 40. Didn't have MAGEC rods in the end as has possibility of MRI's in the future due to having NF1. So she has sliding growth rods along the lines of Davies Dominoes, they haven't slid on there own so having 6 monthly lengthenings.

  12. #12
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    Default Re: update on Frankie

    we are lucky that sophies cast can be removed for half an hour each day so washing was never a problem..i remember worrying like crazy before the casting then a week after thinking what was all that about?..sophie actually likes her casts and sometimes does not want it taken off..curve has stayed same since casting which is good allthough a reduction would be better..sophies main problem with her cast is that its blue

  13. #13
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    Mar 2012
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    Default Re: update on Frankie

    Francesca would hate blue. That's good that it can come off for washing. I didn't realise you could have casts that come off, thought it was only braces that were removable. Learning new things all the time

    X-ray of F's corrected curve. Diagnosed Feb 2012 41 degrees. Upon casting july 2012 curve had progressed to 47 degrees with compensatory curves of 28 above and 36 below. Due to have magnetic rods inserted in April as Main curve has reached 58 degrees and compensatory curves over 40. Didn't have MAGEC rods in the end as has possibility of MRI's in the future due to having NF1. So she has sliding growth rods along the lines of Davies Dominoes, they haven't slid on there own so having 6 monthly lengthenings.

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