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cp & pain

4 replies

mymatemax · 30/09/2012 00:09

Ds2 has been getting regular episodes of severe pain in his calf, knees & ankles. Beyond the usual exrcises & stretches has anyone any advice please. He has mild spastic dip cp.

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madwomanintheattic · 30/09/2012 04:57

Cramping due to spasticity? Or pain associated with low tone? (I know you said spastic, but dd2 was carting around a nonsensical spastic dx for years with low tone)

Have you ever discussed baclofen or Botox with profs?

Is he going through a growth spurt? Is he independently mobile? Hydrotherapy?

mymatemax · 30/09/2012 14:09

Thanks madwoman, yes he is having what seems like anever ending growth spurt. He is mobile but has always tired v easily.
His physio questioned the spastic dip dx as his tone is very changeable. His top half is very def low tone& floppy. He is v stiff & rigid in the morning, calfs r tight but ankles sideways v floppy.
Never discused botox or baclofen, other than loosening the tightness not sure if it has other benifits?
he,s not had hydro fro years but does swim (well splash around) regularly.
Ive bought his physio appnt forward but they seem to just see a child that has a good degree of mobility considering his dx & say see you again in 3 months.

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madwomanintheattic · 30/09/2012 15:22

I might be tempted to ask for an orthopedic consultant referral... I wonder if it is pain associated with unstable joints, rather than muscular? (Akin to eds type stuff) could be bog standard 'growing pains' of course... It's never easy, is it?

Did you ask on the cp thread?

We had dd2's dx changed at 4, because it was becoming ridiculous.

mymatemax · 30/09/2012 18:49

Thanks again madwoman, think I need to make sure we get a bit more out of the appnt this time. Ill suggestv an ortho appnt. It doesnt help that he isnt able to explain during an appnt due to his autism & ld's

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