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Old 12-06-2013, 09:54 AM
mez70 mez70 is offline
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Join Date: Apr 2010
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Default some input and questions (help please)

Hi there,
I have an 11 year old daughter who was Dx'd in 2010 at age 7.5 with Scoliosis with a curve of 32 Deg from t6-11 (inclusive)

She has had 2 plus years in a Boston Brace where to our and the specialists amazement her curved corrected back over to time to 10 Deg, We think the fact we caught it early and right at the beginning of a huge growth spurt helped with that. In November last year due to the curve staying fairly static they decided to trial her out of the Brace for 4 mths. In March she had regressed back to 16 deg and we are having a second review next month where if as expected we will need to look at treating again. This is where the confusion and worry starts.

My daughter is an ex 31 week prem and has had many ongoing health and developmental issues as a result. She is very skinny and in fact very underweight, she also is an affected carrier of a genetic condition called fragile X of which one of the Physical traits is low tone though out the main body core (torseo) frequently leading to well as many others which are not on topic so will leave out. What we found over the 2.5 years she wore the Boston was that due to the Brace being so snug and tight she was unable to gain weight as she constantly felt full and never ate major amounts due to getting full quickly, even a high Cal /High GI diet failed to fully address this and her weight actually fell back down her curve on the chart to the concern of her regular Paed. Also when wearing the Boston, she is unable to cough effectively and in the 2 years she had pneumonia twice (when in the 7 years prev only had Bronchitis once) which also has lead to her loosing 2.5 kg in 10 days which she doesn't have to loose..

So in a nutshell the Boston whilst being the most conservative treatment option is clearly having negative impacts on her general and Physical health. Not to mention she suffers anxiety and while she is in grade 5 at the moment Having a Boston in High school is going to be problematic.

Now I have read and researched and seen articles on Spinal Stapling and am very interested in some Australian feed back and data even some feedback from people who have had kids undergo this proceedure. WE are at the upper end of the window of opportunity though the way my daughters weight is that window may remain open longer as they feel she wont get her period due to her weight issues

Our general Paed has said to speak to our Ortho which we will as the down side to surgery is that it will take a lot out of her, she has a mummer and is very anxious and stressed with any medical intervention (she has had way to much for her age) but the up side is that afterwards and a short period of bracing it will be over and done with, versus the constant and on going health implications of being significantly underweight, getting pneumonia, the social and emotional aspects of bracing etc during teen years with no guarentee of it holding long term due to the low tone. I also know 2 people who had Bostons as teens and I has then gone on to have rodding done and the other needs to have it done.

I am leaning towards asking about the Stapling but would really like some input if people have had it done on Hosp time, recovery etc and also opinions on how people choose??? I am really between a rock and a hard place as both treatment options have such massive implications.

Thank you in advance
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