I want to welcome all the new members, and to let them know, though our kids may be on a different journey than 'typical' kids, and the road can be rough at times, they are still 'children' first, and with the support and love from us I am confident that they will become HAPPY, productive adults.

Have a Safe and Happy Holiday Season.

Debbie

mom to:  Ryan 6-Noonan's

              Tyler 11

              Andrew 8-CAPD

              Jayson 2

Hi Lorraine,

My 14 month old Zachary was diagnosed with noonans in mid-October.
He also was diagnosed with JMML in October 2003.  The doctors didn't
think that Zack had either Noonans or JMML either and then they
crushed my world when the told me he tested positive for JMML.  Zack
has never gotten any symptoms of JMML since his flare up that made
them test for it.  He has still not had any treatments and now that
the Noonan Syndrome diagnosis was made we are now in a holding
pattern waiting and hoping that he is in the 10% that get the
transient version.  He has his blood counts checked every 3 months at
CHOP-Children's Hospital of Philadelphia.

I also looked for the growth chart for Noonan syndrome.  It only
shows length/height.  The pediatricians still use the normal growth
charts and his endocrinologist and geneticist use both to plot his
growth.  Zack has a genetics appointment next week and I can ask them
for a copy of the noonans chart for you if you want and then I can
email or post mail it to you.

You and your family are in my thoughts and prayers - dealing with all
the news of both diagnoses in such a short amount of time is
overwhelming.

Talk to you soon,
Beth, mom to Zack 14 mo (JMML & Noonans)& Ethan 3yrs
www.caringbridge.org/pa/zack


--- In noonan_support@yahoogroups.com, "bailblue" <bailblue@y...>
wrote:
>
> Hi,
> My 7mth old son Bailey was diagnosed with noonans last week.  It's
a
> 2nd shock for us because he was also diagnosed with jmml (juvenile
> myelomonocytic leukaemia) in July.
> His heart scan 2 months ago was clear and he's very much into his
> milk and solid food and most docs didn't think he had it by looking
> at him.
> He's always been on the bottom of the growth charts.  I've heard
> there is a noonans chart.  Does anyone know where I can get one?
>
> Thanks Lorraine

Hi,
My 7mth old son Bailey was diagnosed with noonans last week.  It's a
2nd shock for us because he was also diagnosed with jmml (juvenile
myelomonocytic leukaemia) in July.
His heart scan 2 months ago was clear and he's very much into his
milk and solid food and most docs didn't think he had it by looking
at him.
He's always been on the bottom of the growth charts.  I've heard
there is a noonans chart.  Does anyone know where I can get one?

Thanks Lorraine

--- In noonan_support@yahoogroups.com, "Beth" <zack082503@t...>
wrote:
>
> Hi,
>
> My name is Beth and my son Zachary was just diagnosed with Noonan
> Syndrome this past week.  He is almost 14 months old.  He tested
> positive for JMML at 2 months old but so far it is transient.  We
> have a cardiology appt. coming up but to date has not had any
heart
> problems that we know of.  I still don't know much about Noonan
> Syndrome and am wondering what we are going to be dealing with in
the
> future, both near and far.  Zack does have feeding issues - FTT,
> reflux and allergic colitis.
> I have a website set up for him:  www.caringbridge.org/pa/zack
> Hope to get to know you and your children and learn more about
this
> syndrome.


Hi Beth
Nice to meet you.
I am glad Zach does not have any heart problems.
Kyle also had feeding problems. he failed to thrive and has had 8
hernia operations. He also had problems with his ears draining due
to the way they sit. He is still small but with technology now we
are going to help him out a bit with growth hormones and putting
devices on his long leg bones to help out. If you ever need to talk,
or have any questions let me know.

Kat(kim)
>
> Beth

My Name is Kim and my Son Kyle(16) was born with Noonans. Well that
was a dumb statement, of course he was born wit it, you don't catch
it.

Kyle is pretty healthy. He has a rough go as an infant. He is only
4'7" right now and weighs 80lbs. He has a great presonality and is
only mildly delayed in school. This year he is getting his feet ad
legs operated on. he has no arches which has caused his legs to bow
in. At the same time he has requested to have his bones lengthened.
He is a brave boy. He will alse have his eye lids done and his ears
pinned back. This was all by his request. Socially he is not delayed
and he feels left behind due to his physical appearence. I am a
single mother with Multiple Sclerosis. It can be quite tough at
times but he has taught me so much. Number 1 is patience. Kyle also
has ADHD. Some days there is not a ritalin pill big enough!!!
Mike his brother does not have noonans, but is delayed in his
reading and speech. The specialist thinks he may carry the gene but
have a very very mild case of noonans.
Kyle does not have a heart abnomality. Thank Goodness. He does have
trouble with his muscles ripping.
Anyway, its nice to meet all of you. I can't wait to chat.

Kim

Hi - my name is Heather and I have a daughter Becky (9) with Noonan
Syndrome.  (There is some information about her at www.hnye.com)

Looking forward to chatting to other people about NS, as I haven't
done so for a very long time!

Regards

Heather

Hi,

My name is Beth and my son Zachary was just diagnosed with Noonan
Syndrome this past week.  He is almost 14 months old.  He tested
positive for JMML at 2 months old but so far it is transient.  We
have a cardiology appt. coming up but to date has not had any heart
problems that we know of.  I still don't know much about Noonan
Syndrome and am wondering what we are going to be dealing with in the
future, both near and far.  Zack does have feeding issues - FTT,
reflux and allergic colitis.
I have a website set up for him:  www.caringbridge.org/pa/zack
Hope to get to know you and your children and learn more about this
syndrome.

Beth

Hello, all!  I am a special ed teacher and have been researching
Noonan's syndrome lately.  Didn't realize how rare it was and how
little info is out there.  Glad to have come across this group.
Looks like it has real potential.  Would like to toss out two
questions and see if the insight of others may help me learn.

1.  Would love any info anyone is willing to share on what you wish
your child's special education teacher knew about Noonan's or
children with Noonan's.

2.  Anyone have any expecially good resources to recommend?

I am constantly amazed by the strength and resourcefulness of the
parents/caregivers of my students.  Can't wait to hear what other
have to share.

Hi,

My name is Beth and my son Zachary was just diagnosed with Noonan
Syndrome this past week.  He is almost 14 months old.  He tested
positive for JMML at 2 months old but so far it is transient.  We
have a cardiology appt. coming up but to date has not had any heart
problems that we know of.  I still don't know much about Noonan
Syndrome and am wondering what we are going to be dealing with in the
future, both near and far.  Zack does have feeding issues - FTT,
reflux and allergic colitis.
I have a website set up for him:  www.caringbridge.org/pa/zack
Hope to get to know you and your children and learn more about this
syndrome.

Beth

Hello,

My name is Jacqui and I am a mom of a 10 year old boy who has
experienced many of the same difficulties (physical, emotional, and
educational) as many of the children I have just learned about who
have been diagnosed with NS.  My son has been diagnosed by his
doctor with ADHD, has learning disabilities, and has receptive and
expressive speech difficulties, in addition to many other medical
problems.  I was searching the internet and found the
noonansyndrome.org website and discovered many similarities between
my son and the kids I see on other noonan websites.  I am looking to
connect with parents to find out more about diagnosis and treatment
of Noonan syndrome. Thank you.

Hello, I see this is a very slow group, but I figured I'd check it
out :)  My name is Shannon, I have 3 kids, soon to be 4.  We are
adopting a little boy who has Noonan Syndrome, and I need some
information about doctors.  We'll have to change his dr, and I don't
have a ped that I really like in this area yet (Ft. Smith, AR).  We
moved here about 9 mo ago, and we've seen several ped's, but none
that I really feel comfortable with.  Is there a list of dr's who
specialize in gentic disorders somewhere?  Is there anything I should
know before we bring our angel home?

TIA,
Shannon
Mom to G7, B6, G4.5, and soon to be mom to B3

hello I am new here an really need help in understanding this for I
have an 8 year old who has been diagnoised with noonan syndrome.,she
has got the features of this. she has ASD,pulmonary stenosis an just
last week we were told she is going blind. he develomental delays are
as of an 4 year old . i need to know what to expect before it happens
can anyone help me please thank you debbie

I have a son who is 17 months, who was diagnosed with Noonans at 12
months. Are there any other babies out there?

--- In noonan_support@yahoogroups.com, "kevinbottorff"
<kevinbottorff@y...> wrote:
> I am a 30 year old male who has delt with NS firsthand.  I have
some
> of the symptoms of NS such as webbed-neck(corrected with plastic
> surgery at 13), heart problems(2 heart surgeries at 10 and 28 years
> old),ADD, unpronounced chin, sunken-in chest and some hearing
loss.
> I have never seen anyone with a webbed-neck in my life and this was
> devastating to me as a child.  I still sometimes deal with those
bad
> childhood memories and never had anyone to relate to what I was/am
> going through.  I have taken all types of medication to balance my
> mental state, anti-depressants, anti-anxiety, and blood pressure
> medicine.  I have gotten better and broke out of my shyness stage
> around 18.  But sometimes I find myself still self-conscious about
> the scars on my neck and body from my surgeries.  I would like to
> correspond with anyone interested with what I have been through.
>
> Sincerely,
> Kevin Bottorff


Hi my name is Alyson and I'm 41 years old.I was born with congenital
heart disease.I had pulmonary stenosis and atrial septal defect.I was
born with a big head and droppy eyes.My brother was born and died in
1964 of congenital pulmonary lymphangiectasia.Three weeks after he
died I went into congenital heart failure the doctors told my parents
I wouldn't live.In 1969 I was found to have a brain absecces and the
doctors gave me a 5% chance at life.The next year I had open heart
surgery.Through the years classmates as well as others have made fun
of me.I have had learning disabilites as well.Sometimes life isn't
easy but I guess you just manage to go on someway.I'm trying to get
the help I need.

Best wishes
Alyson Manasco

Hello everyone,

My name is Kathy and I have a 3 year old daughter with Noonan's.  I
am anxious to talk to others that are affected by this genetic
disorder.  Hope to hear from you soon!!

Kathy

I am a 30 year old male who has delt with NS firsthand.  I have some
of the symptoms of NS such as webbed-neck(corrected with plastic
surgery at 13), heart problems(2 heart surgeries at 10 and 28 years
old),ADD, unpronounced chin, sunken-in chest and some hearing loss.
I have never seen anyone with a webbed-neck in my life and this was
devastating to me as a child.  I still sometimes deal with those bad
childhood memories and never had anyone to relate to what I was/am
going through.  I have taken all types of medication to balance my
mental state, anti-depressants, anti-anxiety, and blood pressure
medicine.  I have gotten better and broke out of my shyness stage
around 18.  But sometimes I find myself still self-conscious about
the scars on my neck and body from my surgeries.  I would like to
correspond with anyone interested with what I have been through.

Sincerely,
Kevin Bottorff

There is an excellent support group for those affected by NS.

www.noonansyndrome.org

The Noonan Syndrome Support Group
PO Boxd 145
Upperco 21155
MD
USA

Hello,

This is my 1st contact with this group.  I have a 6 year
old little boy with NOONAN'S SYNDROME.  I would like to contact
people likely to bring information on this disease.  We live in
Brittany.

Thank you in advance for the assistance brought.

Hello and welcome to the noonan_support eGroup. This eGroup is relative new and there are only about 5 members so far. I am working on promoting this eGroup as well as the whole "Rare Disease Support Community."

Currently, I have over 1000 rare disease support groups. You can find a lisiting of the groups by visiting my web page at:

http://www.raredisorders.com

I personally am not affected by noonan's nor anyone I personally know. I do have two sons affected by a rare genetic disorder and they are the reason for my developing this support community. I honestly hope we don't have many members but since I know there are a lot of people out there who are dealing with these rare disorders and are needing support, I expect this community will grow.

I hope the other members of this support eGroup are able to provide you with some information and the support you need.

Please feel free to contact me if you need particular help with anything.

Again, Welcome!

David Hughes, Founder
Rare Disease Support Community
http://www.raredisorders.com
RDSC@...

Hi, my name is Louisa and my 4 year old son has just been diagnosed with
Noonan's Syndrome (in november) and I found this list while browsing. My son
is severe-profoundly deaf in addition to having had open heart surgery for
pulmonic stenosis, surgery for pyloric stenosis and an orchidopexy. He has
scoliosis for which he wears a Milwaukee brace and has behaviour problems
due to ADHD, ODD and SID. He sleeps poorly and therefore so do I. He is
below 3rd percentile for height and weight and si emotionally and socially
delayed in development by about 1 1/2 years.

At the moment, dealing with his difficult behavious is the most difficult
thing. Does anyone else have a problem with this in their child?

Louisa
(mom to Ciaran, 4 NS)





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I am a new member to this group that until last night did not know
that much about Noonan Syndrome.  I have two brothers that have one
healthy child each. Each brother also had a child that died from what
doctors were saying was a rare disease called Noonan's.  At the time of
these deaths I was to young for anyone to talk to me about the disease.
  My one neice lived to be 5 months old and the other lived to be five
months old and my other neice lived to be 6 years old.  The six year
old lived her whole life in pain and half of it in the hospital.  This
took alot out of my brother and sister-in-law.  He has always had a
hard time dealing with it.  My sister-in-law has always wanted me to
have testing done before I had children, but never came out and said
it.  I think it is because my brother did not want to deal with it.

     This all came to a head for me because my wife of 26 days is
pregnant.  We have been together for 9 years and did not think we would
be able to have children because of endrometrosis (hope that is correct
spelling) that she has had since she was 19 years old.  The doctors
told her she probably would not be able to have children, but it would
be the best thing for her.  We went on our honeymoon and said if we get
pregnant great, but if not ok.  Well great happened, but now we are
very concerned from the information my sister-in-law told me.

      My sister-in-law told me that this is a rare disease and is in
alot of people, but not always to the degree of my neices.  I started
reading the features of Noonan Syndrome on the internet and found that
some of the characteristics or seen in our family.  I have hearing that
has been bad since childhood, short stature (5 7') and am near sighted.
  My oldest brother has short stature, near sighted and has a flat,
broad root of nose.  The brother in the middle of us does not have any
of the characteristics.

      I am a little more concerned that the baby that we will be having
in 8 months will have the problems that my two neices had.  I want to
try to find every website I can to find out any information about this
disease.  When my neices' were born in the early to mid 80's the
syndrome could not be detected before childbirth, but I don't know if
that is true anymore.

      Please forward any new information or websites to my e-mail
address billycpa@....

I recently received an email asking about our eGroup. This is a new site that I am just starting. I personally have no experience with Noonan's Syndrome. I have two sons affected by a rare genetic disorder that only affects boys. I have started a number of these groups. If you go to the following address, you will find a listing of all the Support eGroups I am founder/manager:

http://www.angelfire.com/on2/egroups/index.html

You are the first member of this eGroup. If you wish to stay, I will try and help you develop more contacts/members to join this group. If you know of others who could be interested in joining, please let me know and I will send them an invitation.

I look forward to talking more with you. Just take a little bit of time and explore this site and you will see all the wonderful features it gives you for communicating with others with a similar interest.

Talk again soon.

David Hughes Rare Disease Support eGroup Manager

I recently received an email asking about our eGroup. This is a new site that I am just starting. I personally have no experience with Noonan's Syndrome. I have two sons affected by a rare genetic disorder that only affects boys. I have started a number of these groups. If you go to the following address, you will find a listing of all the Support eGroups I am founder/manager:

http://www.angelfire.com/on2/egroups/index.html

You are the first member of this eGroup. If you wish to stay, I will try and help you develop more contacts/members to join this group. If you know of others who could be interested in joining, please let me know and I will send them an invitation.

I look forward to talking more with you. Just take a little bit of time and explore this site and you will see all the wonderful features it gives you for communicating with others with a similar interest.

Talk again soon.

David Hughes Rare Disease Support eGroup Manager

This is a Rare Disease Support eGroup for persons affected by "Noonan's
Syndrome," family, medical professionals and anyone else interested in sharing
information and/or support for affected individuals.

Group Manager: noonan_support-owner@egroups.com

To subscribe, send a message to noonan_support-subscribe@egroups.com or go to
the e-group's home page at http://www.egroups.com/list/noonan_support