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Thread: Brace update (emma now 4yrs old)

  1. #1
    Join Date
    May 2005
    Location
    UK
    Posts
    26

    Brace update (emma now 4yrs old)

    Thanks to all those who gave me advice re emmas brace in last few months. I never thought it would happen, but she has actually got used to it and is now wearing it for 21-23 hours a day. I let her take it off for her 4th birthday party....and (being a tomboy who doesn't like dresses) she actually asked if she could wear her brace instead of her party dress! She has no hang-ups about it, runs around with her cousins wearing nothing but a brace and knickers. She recently started wearing it to nursery school and walked in with her shirt held up high so that every one could admire her "super-hero vest" (her name for her brace).

    On a less positive note...is there anybody out there who is or has had problems getting a diagnosis for the condition causing the scoliosis?
    All the specialists agree that Emma's scoliosis is NOT idiopathic (she has mobility problems and weak muscles down the right hand side of her body), but none of them to date have been able to pinpoint the cause.

    She had a brain scan a few days ago (results not thru yet), I read thru her notes and found that her paediatrician (who told me she was just a "late developer" when she couldn't walk at 2 yrs old), now believes that she may have "Proteus Syndrome". I looked it up and discovered that it was the condition that the "Elephant Man" John Merrick suffered from! He is basing this theory on an incorrect observation that she has one hand and one foot much larger than the other (they look exactly the same to me...and to her physio). Out of the 10 main diagnostic features of Proteus Syndrome listed on the "Proteus web-site" she has one....a naevus (strawberry birthmark). Needless to say the paediatrician had never bothered to tell me about this theory, or send me copies of his correspondence regarding the investigation. Good old British National Health Service!

    Fortunately her scoliosis is being managed 200 miles away from this guy, at Great Ormond St Hospital (I insisted on it because of my lack of faith in the local provincial hospital). Anyway the theory may be flawed, but hopefully the brain scan and other tests may help to pinpoint the cause and/or eliminate some other conditions....but it is really frustrating shuffling from hospital to hospital (we've been referred to 4 different hospitals in 4 different cities in the last 2 years) especially when the consultants ignore your requests for copies of correspondence and don't actually inform you of their current theories.

    One more question for you all. I'm sure I read somewhere that it's possible to make small alterations to the brace by yourself, is this right? I ask because Emma is due to travel to London in 6 weeks to have a new brace fitted, but in the meantime she is getting a little chafed on her bottom because the "tail" of herr current brace seems to turn inwards slightly. I don't want to break the darn thing, but if I can safely adjust it I will.

    Thanks

  2. #2
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    "I'm sure I read somewhere that it's possible to make small alterations to the brace by yourself, is this right? I ask because Emma is due to travel to London in 6 weeks to have a new brace fitted, but in the meantime she is getting a little chafed on her bottom because the "tail" of herr current brace seems to turn inwards slightly. I don't want to break the darn thing, but if I can safely adjust it I will"

    My Dad used to make 'small alterations'/running repairs' to my brace, He would trim a little bit off the top, and would 'flay' a little bit around my legs........curl the edges near my legs, so they wouldn't 'dig in'. He came from a mechanical/engineering background and had an idea of how the material the brace was made out of worked, and how to 'work around it'.

    Trimming bits off (ie up the top) isn't too difficult to do (either scissors or a saw).........however 'flaying's' (not the right word for it, means kinda curling things upwards or outwards) a bit more dangerous and difficult to do. My Dad ((from memory) would stand with my brace in front of the heater (often the heater in the loungeroom.........not something I'd suggest/nor endorse in any way), to get it hot, then would manipulate it, or would take it out to his shed to some of his welding stuff.......do something then it would come back different.

    Maybe try phoning the orthotist........he/she would maybe be able to give you some suggestions........


    *Claps* and a big hug to Emma for doing so well with her brace (and Mum too).......made me smile about wanting to wear the brace instead of the party dress ;-)

  3. #3
    Join Date
    Mar 2005
    Location
    Kannapolis, North Carolina, near Charlotte
    Posts
    373
    Allison is on the right track. The orthotist for my daughter would heat the brace somehow and flay parts of it outward enough to relieve the pressure on areas such as those at her hip. She could even try it for a few days after adjustment and then we would return for more adjustments (price included in the price of the brace) if needed. Of course, we have a sattelite office for the brace company not far from us, so I didn't have to have her miss school to go. Call you orthotist. Also, the main office for our orthotist did not offer the satelite until after a few trips to the main office, which is about an hour drive. Check who is closest to you, if the orthotist can adjust it somewhere reasonable close. Kris

  4. #4
    Join Date
    May 2005
    Location
    UK
    Posts
    26

    re brace

    Thanks for your advice, I'm a bit nervous about heating the brace. Unfortunately the local orthotist is not available at the moment. However we will be seeing the London team on Nov 11th, so when Emma gets the new brace I'll ask about D.I.Y modifications for future reference. I'll keep the chafing down with barrier cream until then.

    The good news is that the brain scan revealed no problems, and that they re-measured her hands and feet.....and agree that there's no difference...and have ruled out "Proteus Syndrome". She has now been referred to a geneticist, so that they can search their "Syndrome Databases" against her symptoms. Personally I still suspect that Emma has a mild case of cerebral palsy, which would explain the indications of "hemiplaegia" the docs have observed....and a few strange little tics that surface when Emma is stressed.

    Anyway thanks again folks....By the way Alison (re some earlier suggestions you made) ...Emma's "Bugs Bunny" now proudly sports a cardboard brace...and the stickers on the real brace, have proved very popular!

    Best Wishes

    Kate

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Kate,

    Good to hear Emma is accepting her brace and wearing it well! Good job. Also, good news about the brain scan. Has she had a full spine MRI? That may answer some questions, or it may be negative for any abnormalities and you can assume there are no spinal cord issues involved.

    You also mentioned that the docs say her scoliosis is not idiopathic. Did they tell you if there are bone malformations in the spine/vertebrae? Or do they assume that whatever genetic or medical condition she has is the cause for the scoliosis, with in-tact vertebrae? Just curious mostly.

    Good luck with everything.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  6. #6
    Join Date
    May 2005
    Location
    UK
    Posts
    26

    Mri

    Re your question on MRI. Emma has had a full spine MRI, at the time they were expecting to find signs of Spina Bifida Occulta (she has a well defined sacral dimple, which along with her midline facial haemangioma/strawberry mark is regarded as a strong indicator). All they found was the scoliosis, no spinal or vertebral abnormalities at all.
    All the specialists however are now in agreement that it's not idiopathic, due to the muscle weakness in the legs and down the right side of her body...she wasn't able to stand up or walk unaided until she was 2 yrs old, and still can't run or jump. So hence why they think it is a neuro-muscular disorder...they just can't work out which one, cos it doesn't "fit" any profiles (eg not any of the Spinal Muscular Atrophy groups etc).
    So she is a bit of a mystery...but she's bright, happy, feisty and her "gimp" doesn't seem to bother her at all.
    Our main problem at the moment, is that she's learnt to play me like a guitar...gets Mum to help her with things she can or should be doing by herself ! Fortunately her physio is very good at exposing her "hidden talents" !

  7. #7
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    Northland Med,
    Shame, shame on you. You and your associates are not in any way qualified to help a child with a possible neuro muscular diease. Stop using this board as a money maker.

    You call your self a doctor, but fail to add that your doctoral degree is in MATHMATICS and has nothing to do with medicine, much less orthopedics.

    Shame on you!
    SandyC

  8. #8
    Join Date
    Mar 2005
    Location
    east coast
    Posts
    359
    Quote Originally Posted by northlandmed
    Email me and I will forward you pictures of pre and post treatment x-rays of some of my scoliosis patients that have been treated with this technique. Dr.Britton
    X-rays and pictures, huh? No creditability in those.. they both can easily be manipulated by having the person stand/position their body in a certain way to give the illustion of positive results.. Picture tell thousand words..but they also tell lies.

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