This is Dr. David
I am so sorry about your daughter.
it sounds like her bones are joints are so brittle.
she needs testing of her vitamin D levels ( to rest for rickets disease) and also to be checked for juvenile rheumatoid arthritis.
if those are negative, she might need genetic testing to check for osteogenesis imperfecta, sometimes known as brittle bone disease, or Lobstein syndrome
if she has to take the diclofenic for pain, make sure she takes it with food in her stomach and with plenty of fluids.
never take it on an empty stomach.
do you see my replies above?
she needs testing of her vitamin D levels ( to rest for rickets disease) and also to be checked for juvenile rheumatoid arthritis
yes thank you, ***** ***** have tested her for JRA with joint scnas and they say that she does not have this!, as her inflamtion markers are not high enough, aprt from when she had fluid on her hips.
We would just like to get to the bottom of this, we have already spent alot of money privately and got no where! what would your recommendation be in regards ***** ***** to go for the best treatment?
Nuffeild hospital is good
Royal National Orthopeadic Hospital is the largest orthopaedic hospital in the UK and is regarded as a leader in the field of orthopaedics both in the UK and world-wide
they see children there as well.
Ok great, can we ask our GP to do simple blood test to pick this up or the NOC?
vitamin D is a simple blood test.
test for osteogenesis imperfecta is a special genetic test and will require consulting with a genetics counselor.
ok, what about rickets disease?
rickets is low vitamin D
they also say that she is hyper mobile
she could have also a collagen vascular disease as well causing weakness of her collagen and ligaments and joints.
the most common collagen vascular disease is ehlers danlos syndrome.
MT, looks like we have a few avenues to go down, Her grandmother has ehlers danlos syndrome and the NOC are aware of this.
good luck to you and her.
I hope she gets better
let em know if you have other questions.
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MT, I think we have enough to go on
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Thank you very much, yes very positive, a great help.
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Yes will submit now, have a good night!