In one of the articles I read in my early digging about Noonan's, I
found a list of symptoms parents consistently reported their children
experiencing but that weren't included in a diagnosis or 'what to
expect'.

One of the key things that stuck with me was "extreme bone pain".

I'll see if I can find it again and post the link for everyone.

~Robyn


--- In noonan_support@yahoogroups.com, Diane Bond <dianebond46@...> wrote:
>
> Hi Lynda, thanks my grandson lloyd is the same as Connor, and we do
the same as yyou,.We have also started to massage legs in the bath, it
seems to give a little relief. 
>
> --- On Tue, 12/8/08, lee770894 <l.robinson660@...> wrote:
>
> From: lee770894 <l.robinson660@...>
> Subject: [noonan_support] Re: Aching legs
> To: noonan_support@yahoogroups.com
> Received: Tuesday, 12 August, 2008, 7:37 PM
>
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> -Hi,
> My son Connor has always had problems with pain in his legs mainly at
> night. He does have hyperextensive joints and through the years he has
> had PT. He wears opthotics inside his shoes and he takes pain
> medication when he can't handle the pain much longer even though he has
> a very high pain threshold. I usually massage his legs and he uses a
> wheat bag which can be heated in the microwave.Connor has his own
> webpage at www.caringbridge. org/visit/ connorrobinson. Please take a
> look.
> Lynda mum to Lee and Connor
>
> -- In noonan_support@ yahoogroups. com, "dianebond46" <dianebond46@
...>
> wrote:
> >
> > Hallo to all,we are wondering do you have problems with your ns child
> > having aching legs at night,this has been ongoing for us for along
> time
> > and getting worst for our child,he has special arches and very good
> > shoes that are flexible,as we all know our children are not the best
> > sleepers, but this certainly adds to our problems.please excuse my
> > spelling mistake in last post,this is what happens late at
> night ,when
> > you dont check.GOD BLESS
> >
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