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
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
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