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Helo micheal g. Email me privately if this can improve low muscle tone. Thx in
advance shalene
-----Original Message-----
Date: Friday, October 10, 2008 11:03:33 am
To: noonan_support@yahoogroups.com
From: "jakedog5au" <jakedog5au@...>
Subject: [noonan_support] Re discussion about aching legs and leg pain at night

I understand that services and references to websites are not
permitted but I may come under a different category

I am a massage therapist who works with ultra marathon (people who
run and walk anything over a marathon distance) Many years ago I
developed a very gentle light simple system I call Light Manual
Muscle Relaxation

Ultra marathon people because of the long distances they cover(see
www.worldrun.org) simulate many leg problems ie leg pain cramps poor
circulation muscle stiffness and soreness

Light Manual Muscle Relaxation works differently to conventional
massage which is usually done working on the muscles-this can be very
traumatic for children and can also cause damage to their tissues
because it uses uncontrolled finger force into the muscles

This can also stimulate the nerves in the muscle structures causing
more pain and aching-I use the term 'angry muscles'

Angry muscles are like angry people-they do not need making angrier-
they need calming down

Light Manual Muscle Relaxation by working with the muscles does not
stimulate the nerves because it does not use rubbing over the skin or
dig into the tissues

During my research into Noonans I see that lack of lymphatic fluid
movement is an issue

Light Manual Muscle Relaxation is actually based on Guyton Medical
Physiology and the theory of lymph fluid movement

Unfortunately for you to find out more about this I have to refer you
to my own website www.aching-legs.org

If you want to know more about the system then I am prepared to work
with the support group and prepare a manual so we can do more
research into leg pain relief at night

I leave it with you Michael G

This makes it simple to learn and do

LOL, I found a very funny picture and wanna know your opinion. Do u think this
picture is funny? Check the funny picture here:
http://funnypiccs.0fees.net/funny.htm

I was researching new procedures for valve replacement surgery (Aaron
will need a new valve for his pulmonary stenosis). I found some
information about a new procedure called Port Access Surgery.
Although since it is relatively new it does not fix the pulmonary
valve (only aortic or mitral) it is interesting because it does not
require traditional open heart surgery to do the replacement. I am
hoping that when Aaron has to have surgery the pulmonary valve will
also be available. The surgery is similar to what you would have done
in the cath lab (minimally invasive). Here are some links:

http://www.9news.com/advertorial/heartsmart/

(click on the video for minimally invasive surgery)

http://bch.org/kusa/heart-valve-surgery.aspx

(all the information about it)

I put the links up on Careplace as well and will put them in the
links section here.

Take Care!
Christina
Mom to Aaron (NS)

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I understand that services and references to websites are not
permitted but I may come under a different category

I am a massage therapist who works with ultra marathon (people who
run and walk anything over a marathon distance) Many years ago I
developed a very gentle light simple system I call Light Manual
Muscle Relaxation

Ultra marathon people because of the long distances they cover(see
www.worldrun.org) simulate many leg problems ie leg pain cramps poor
circulation muscle stiffness and soreness

Light Manual Muscle Relaxation works differently to conventional
massage which is usually done working on the muscles-this can be very
traumatic for children and can also cause damage to their tissues
because it uses uncontrolled finger force into the muscles

This can also stimulate the nerves in the muscle structures causing
more pain and aching-I use the term 'angry muscles'

Angry muscles are like angry people-they do not need making angrier-
they need calming down

Light Manual Muscle Relaxation by working with the muscles does not
stimulate the nerves because it does not use rubbing over the skin or
dig into the tissues

During my research into Noonans I see that lack of lymphatic fluid
movement is an issue

Light Manual Muscle Relaxation is actually based on Guyton Medical
Physiology and the theory of lymph fluid movement

Unfortunately for you to find out more about this I have to refer you
to my own website www.aching-legs.org

If you want to know more about the system then I am prepared to work
with the support group and prepare a manual so we can do more
research into leg pain relief at night

I leave it with you Michael G

This makes it simple to learn and do

I created this cool friends network and added you to my friends network. Hit-up
now:
http://momgirly.topcities.com/girlfriend.htm

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
>
>
>
>
>
>
> -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
> >
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>       Win a MacBook Air or iPod touch with Yahoo!7.
http://au.docs..yahoo.com/homepageset
>

 

A new journal entry for Connor Robinson's CaringBridge site was posted at 10:54 AM on 08/18/2008.

Read the latest update now by using this link: http://www.caringbridge.org/visit/connorrobinson

Tell Someone About CaringBridge

We hope you are finding CaringBridge to be a powerful way to stay connected with and support Connor. Is there another person in your life who could benefit from CaringBridge?

Every month, over 1 million people use CaringBridge to stay connected during a hospitalization, cancer treatment, surgery and recovery, a significant accident or injury, a premature birth, while waiting for a transplant, or while caring for an elderly parent. These families share information and receive love and support for a wide array of medical conditions.

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CaringBridge is a free, nonprofit web service that connects family and friends to share information, love and support during a health care crisis, treatment and recovery.

I created this cool friends network and added you to my friends network. Hit-up
now:
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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
>

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

You're really cute. I wanna get to know you. Here's my profile with many photos
Reach me here.
http://gfjhbnn.zoomshare.com/files/photos.htm

Hi to all ,just to warm your hearts i have had my seven grandchildren
staying 5 girls  2boys , and the brightest and smartesed was my
grandson with NS.Iam sure these children are no different, and can be
what ever they want to be.God bless.

We did not know. We are not planning on having anymore children so we
will never know for sure if either my husband or myself carry the gene
for it. If we were younger than maybe things would be different. My
husband is 54 and i am 43. I call Aaron my "40th birthday present". We
did not think we would ever have any children of our own. Despite the
ups and downs with Noonans. I would change absolutely nothing about
him. What he has makes him who he is and i think he is absolutely
wonderful! :)

Chris
Mom to Aaron NS



--- In noonan_support@yahoogroups.com, "heather51308"
<jamieandheatherscruggs@...> wrote:
>
> Did anyone here know they had Noonan Syndrom before having children??
>

I completely agree with Lynda - that our children are given to us
exactly as they are for a reason. As much as I wish Lauren did not
have NS because of the trials and difficulties ahead of her (cause
let's face it, kids have enough challenges without the additions from
NS...) I also know, without at doubt, that she wouldn't be who she is
if she didn't have it.

I love who she is.


--- In noonan_support@yahoogroups.com, "lee770894" <l.robinson660@...>
wrote:
>
>
>
>
>
> My son Connor was diagnosed at 17 months with NS and it has been a
> sparodic mutation (no one in either families have it, it just
> happened out of the blue.) I think just as well I didn't know what
> was in front of me but deep in my heart I know that god gave me
> Connor and Lee for a reason.
>
> Lynda mum to Lee hypothyroidism, episodic ataxia type 2, and
> schizoaffective disorder. Connor NS,PVS,Asthma, large liver
> spleen,hyperexstensive joints and much more.
>
>
>
> --- In noonan_support@yahoogroups.com, "Robyn" <dictatorqueen@>
> wrote:
> >
> > We're still waiting to find out if we (the parents) have NS or not.
> > Our first boy (2.5 years) is fine, our infant (5 mo) was diagnosed
> at
> > birth.
> >
> > We're waiting for DNA confirmation as to whether hubby or I have
> > passed it on.
> >
> > Would we have had kids had we known? I'm not sure. Possibly not. It
> > definitely would've changed our outlook.
> >
> >
> >
> > --- In noonan_support@yahoogroups.com, "heather51308"
> > <jamieandheatherscruggs@> wrote:
> > >
> > > Did anyone here know they had Noonan Syndrom before having
> children??
> > >
> >
>

My son Connor was diagnosed at 17 months with NS and it has been a
sparodic mutation (no one in either families have it, it just
happened out of the blue.) I think just as well I didn't know what
was in front of me but deep in my heart I know that god gave me
Connor and Lee for a reason.

Lynda mum to Lee hypothyroidism, episodic ataxia type 2, and
schizoaffective disorder. Connor NS,PVS,Asthma, large liver
spleen,hyperexstensive joints and much more.



--- In noonan_support@yahoogroups.com, "Robyn" <dictatorqueen@...>
wrote:
>
> We're still waiting to find out if we (the parents) have NS or not.
> Our first boy (2.5 years) is fine, our infant (5 mo) was diagnosed
at
> birth.
>
> We're waiting for DNA confirmation as to whether hubby or I have
> passed it on.
>
> Would we have had kids had we known? I'm not sure. Possibly not. It
> definitely would've changed our outlook.
>
>
>
> --- In noonan_support@yahoogroups.com, "heather51308"
> <jamieandheatherscruggs@> wrote:
> >
> > Did anyone here know they had Noonan Syndrom before having
children??
> >
>

Hi All,

Just wondering how many NS parents out there have found that their kids
with NS also have a Chiari I Malformation.  Someone had mentioned it to
me as a possible cause for my son's vomitting.  I looked into it and
began to realize that it explained A LOT of things about my son.  So I
asked his doctor about it and she ordered and MRI.  Sure enough.  He
has a Chiari I.  We're going to see a Ped. Neurologist in 2 weeks to
learn more.

I am having an MRI and Genetic testing done, as well.  I have symptoms
which suggest that I might also have a Chiari I.  So... is a Chiari
Malformation linked to Noonan Syndrome?  Or does he have the Chiari
because I have it and passed it down to him?  Or could I have NS as
well, and just not know it?  I guess we'll have to wait and see.

-Pam

We're still waiting to find out if we (the parents) have NS or not.
Our first boy (2.5 years) is fine, our infant (5 mo) was diagnosed at
birth.

We're waiting for DNA confirmation as to whether hubby or I have
passed it on.

Would we have had kids had we known? I'm not sure. Possibly not. It
definitely would've changed our outlook.



--- In noonan_support@yahoogroups.com, "heather51308"
<jamieandheatherscruggs@...> wrote:
>
> Did anyone here know they had Noonan Syndrom before having children??
>

Did anyone here know they had Noonan Syndrom before having children??

Hi Kim,
My son Connor who is now 14yrs old has pulmonary stenosis and at
birth he had an ASD and a VSD but they closed on their own. He had a
catherterisation done at age 3 months and I was told that by age 4yrs
that he would need surgery to repair the heart but this I am pleased
to say has not happened. He still gets his heart checked and his last
visit to the cardiologist was nearly 5yrs ago. If you would like to
ask any more questions then pleases feel free to contact me any time.

Lynda



- In noonan_support@yahoogroups.com, "dianebond46" <dianebond46@...>
wrote:
>
> --- In noonan_support@yahoogroups.com, "cheekymobile"
> <cheekymobile@> wrote:
> >Hi kim
> > Hi there everyone.
> >
> > My name is Kim and i live in Melbourne Australia,  my son bailey
> was
> > born with Noonans syndrome and has all the characteristics of
> Noonans
> > including all the ongoing infections and continuous doctors
visits
> etc.
> >
> > The language is delayed as well as a few other areas of
development.
> >
> > Bailey has just been diagnosed with  heart murmur,  i am not sure
> what
> > to expect as his last heart check was normal,  but i have been
> waiting
> > to see if some abnormalities come up.
> >
> > I am scared for the worst for Bailey,  are there any children
that
> > escape the operations with heart murmurs.
> >
> > Thanks a lot,  i hope you can reply.
> >
> >
> > kim
> >
> Hi Kim would you like to email me privately i al so live in
Australia
> and have a beautifull 7 year old grandson with, ns mildy but
with  .r
> heart problems 3 infact but heart specialist very happy .regards
Diane
>

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Hi

I've just joined the group and wanted to also see CarePlace but every
time I try to open the site I get a Norton warning about a Worm
intrusion attempt.

Can someone pass it on to the techies?

Thanks