I wanted to know how to sign up for the turner support group. At the
time I now have support from a more active Noonans support group.But
it would not hurt to have more support or information. Please send me
the link to the Turner group. Do you know anything thing about NS and
heart murmur.--- In noonan_support@yahoogroups.com, Christina Clayton
<clytn_chrstn@...> wrote:
>
> what would you like to know I live in washington tri-cities. I have
NS so I'll try to anwer any
> Qustons you have if I don't get back right a way it's because i
work two jobs.
>
> poeticsham <poeticsham@...> wrote:
> ---I realize this message was from 2005 but my son was
just diagnosed
> withNS and im looking for an actice support group mostr of the
people
> i email dont write back. I understand if you dont reply. I would
like
> to get the information for the turner syndrome support
groups.Thanks
> in Advance.SHAlene mother to Crisaiah NS In
> noonan_support@yahoogroups.com, "Scott n' Ashli" <scottpetitt@>
> wrote:
> >
> > I'm in Seattle. I am relying on the internet for help and support
> for my
> > daughter. There is a lot of Turner groups out there in which
> parents and
> > patients are going through the same medical problems as Noonan's
> kids go
> > through. It might help to join some Turner groups too as they are
> lots of
> > good conversations on growth hormones, behavioral issues, etc.
> >
> > I have noticed that the drs here don't really know about Noonan's
> or turners
> > however, they can treat each medical issue. You just have to go
to
> each
> > specialist and make sure your child is getting the best care for
> all medical
> > issues that come up. My daughter is 3 months old and already has
> more drs
> > that I do. I am collecting information on each medical issue that
> may come
> > up so that if it does, I know who to reach out to and what
> questions to ask.
> >
> >
> > The problem with testing for Noonan's is that testing DNA for
> mutations is
> > so new that you only get a "hit" 50% of the time. I opted for the
> test
> > because Kylie is my first child and I want to know if either
myself
> or
> > husband have it because if we do, we have a 50/50 chance for any
> future
> > child being Noonan's. If this had happened to my second child, I
> may not do
> > the testing because it really doesn't matter what the "syndrome"
> is, just as
> > long as we treat the medical issues quickly and effectively.
> >
> >
> > -----Original Message-----
> > From: kwild1@ [mailto:kwild1@]
> > Sent: Thursday, March 31, 2005 4:05 PM
> > To: noonan_support@yahoogroups.com
> > Subject: Re: [noonan_support] Genetic Study
> >
> >
> > owen has coarctation of the aorta too, his Karyotype also came
back
> neg.
> > they told me they really cant test for Noonans right now and they
> just have
> > to put all the characteristics into the computer and then they
> can "decide"
> > which syndrome is a closer match. ANyway its very frustrating
> indeed...Im
> > notsure where you are but Im in Kansas and not alot of Drs know
> about
> > Noonan's sooo we are kind of teaching them
> >
> > ----- Original Message -----
> > From: Scott <mailto:scottpetitt@> n' Ashli
> > To: noonan_support@yahoogroups.com
> > Sent: Wednesday, March 30, 2005 10:25 AM
> > Subject: RE: [noonan_support] Genetic Study
> >
> > she was born with a webbed neck. They originally thought Turners
> but her
> > Karyotype test came back normal. Than about 2 weeks after birth
> they heard
> > a heart murmur and she went in for emergency surgery to repair
> coarctation
> > of the aorta. She also has a bicuspid aortic valve. All still
> lead to
> > Turners however, genetics feels that the blood test done rules it
> out so the
> > next best guess is Noonans. She really doesn't have many of the
> Noonan
> > characteristics but when you look at her dad, he kind of does so
we
> are
> > checking it out. But like I said, there is only a 50% chance that
> they will
> > find an mutation in the DNA. If they don't, than we just have to
> treat her
> > medically as if she has Noonan's. Very frustrating.
> >
> > -----Original Message-----
> > From: kwild1@ [mailto:kwild1@]
> > Sent: Tuesday, March 29, 2005 2:27 PM
> > To: noonan_support@yahoogroups.com
> > Subject: Re: [noonan_support] Genetic Study
> >
> >
> > Thanks, I wondered if they would make us wait or not I hate
> waiting! ASD is
> > Atrial Septal defect, PFO is Patent Foramen Ovale and PVS is
> Pulmonary Valve
> > Stenosis the heart defects go along with the Noonan's good luck
on
> the test
> > results I hope they dont find anything negative...ps not to be
> nosey but
> > what made you decide to have her checked?
> >
> > ----- Original Message -----
> > From: Scott n' Ashli <mailto:scottpetitt@>
> > To: noonan_support@yahoogroups.com
> > Sent: Tuesday, March 29, 2005 3:53 PM
> > Subject: RE: [noonan_support] Genetic Study
> >
> > we just had our daughter in a couple of weeks ago to see if we
can
> track
> > down a noonan diagnosis. They took a tiny brush and rubbed her
> cheeks for
> > 30 seconds on each side. They than will go in and check the DNA
> makeup of a
> > specific Chromosome. They only find a mutation 50% of the time
and
> it takes
> > 8 weeks for the results. If they do find a mutation, they will
> test my
> > husband and I to see if we passed on the gene as it is dominate
and
> would
> > mean that any furture kids would have a 50% chance of being
> noonan.
> >
> > What is IS, ASD, PFO, PVS?
> >
> > -----Original Message-----
> > From: kirsten [mailto:kwild1@]
> > Sent: Tuesday, March 29, 2005 10:36 AM
> > To: noonan_support@yahoogroups.com
> > Subject: [noonan_support] Genetic Study
> >
> >
> >
> > Hi everyone, we have an appt with the Geneticist on Thursday to
do
> > their little work up....Im wondering if anyone has had any
> experience
> > with this and what does it entail? Thanks...Kirsten mom to
> Alexandria
> > 12,Ethan 2 1/2 and Owen 29.5 Wkr.10 mos Noonan
> > Syndrome,Gtube,IS,ASD,PFO,PVS
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > _____
> >
> > Yahoo! Groups Links
> >
> >
> > * To visit your group on the web, go to:
> > http://groups.yahoo.com/group/noonan_support/
> >
> >
> > * To unsubscribe from this group, send an email to:
> > noonan_support-unsubscribe@yahoogroups.com
> > <mailto:noonan_support-unsubscribe@yahoogroups.com?
> subject=Unsubscribe>
> >
> >
> > * Your use of Yahoo! Groups is subject to the Yahoo! Terms of
> Service
> > <http://docs.yahoo.com/info/terms/> .
> >
>
>
>
>
>
>
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