This is just awesome guys! I finally got around to graduatin and I didn't even
have to turn up a single day this time around to get my final credit points. Now
I am fully qualified in a BA and on the hunt for a new job! I'll let you
guys know how I do, but just thought I'd mention this now since they helped me
out. If any of u interested in getting a BA or something similar without having
to go through all the hassle they put you through in US institutions give these
guys a call 770 621 2634 . They got me through in around a month.
Just got my BS and i wasnt even required to turn up! Just called these people
1-770 621 2634, filled out a few forms and a bit of paperwork and was
accredited
within 3 weeks at an internationally recognised Uni! How good is that!
--- In noonan_support@yahoogroups.com, "ko85018" <ko85018@...> wrote:
>
> I have a 16 year old son. He has a very low tolerance level, seems
> fairly anal and rigid in his behavior. He is also socially immature
> for his age. Is any of this related to his Noonan's or just him?
>
Hi,
Our daughter Chelsea is 16 years old. She exhibits the same
behavior. Socially she prefers the attention of adults over same age
peers. Yes it seems to be related to thier "Noonans".
I have a 16 year old son. He has a very low tolerance level, seems
fairly anal and rigid in his behavior. He is also socially immature
for his age. Is any of this related to his Noonan's or just him?
Welcome and congratulations on your new baby daughter! I know it can
be so overwhelming. I remember when i was first told that my son may
have this condition, was a bit freaked out. Knowledge is power tho -
and that is what helped me out alot. There is a noonans syndrome
website that i found to be a great resource. My son was tested and
found positive for the PTPN11 Gene - however he does not have alot
of the facial characteristics. He does have a pectus carnium but the
major reason he was tested was because of the type of pulmonary
stenosis he had, and the type of muscle thickening in his heart
(typical of noonans). Unfortunatly the test for noonans is
unrealiable because they are still finding out so much about this
disorder - so its hard to say. Alot of noonan characteristics mimic
other genetic disorders. I hope you get some answers from your doc.
Good luck
Christina
Mom to Aaron NS
--- In noonan_support@yahoogroups.com, "Meredith Clavenna"
<lameremere@...> wrote:
>
> I have a beautiful 8 month old daughter named Chloe who will
probably
> be diagnosed with NS. I say "probably" because she is in the
process
> of being diagnosed, but hasn't received a definitive diagnosis
yet.
> We live in Dallas, but take her to doctors at Texas Children's
> Hospital in Houston. Does anyone out there know of any support
groups
> for Noonans parents in the Dallas area? We are anxiously waiting
on
> the results of the first genetic test for the PTPN11, but I know
the
> test is pretty unreliable. Chloe has many of the physical
> characteristics of NS, so can a diagnosis be made strictly on the
way
> a person looks? Is there anyone out there with NS who also had a
> cystic hygroma? Chloe has an AV canal heart defect, a cystic
hygroma
> as well as many of the other facial characteristics. Any words of
> wisdom from parents of children and/or people with NS would be
greatly
> appreciated. My husband and I are overwhelmed and anxious.
Thanks
> very much!
>
Hello and welcome. I know it can get overwelmin. My son Crisaiah is
5mths old with NS. Yes the characteristics such as facial features
can lead to a diagnosis since NS mostly depends on Clinical
diagnosis. The test is a 50% chance of provingNS Dx. Dont worry you
are not alone. I felt like you 3half mths ago. The main thing is you
know. Now educate yourself best you can in order to help little
Chloe. Knowledge is power. subscibe to the NS list server at
HOME.EASE.SOFT. gOOD LUCK, if you have any questions FEEL FREE TO
ASK.
SHALENE mom to Crisaiah 5mths NS
noonan_support@yahoogroups.com, "Meredith Clavenna" <lameremere@...>
wrote:
>
> I have a beautiful 8 month old daughter named Chloe who will
probably
> be diagnosed with NS. I say "probably" because she is in the
process
> of being diagnosed, but hasn't received a definitive diagnosis
yet.
> We live in Dallas, but take her to doctors at Texas Children's
> Hospital in Houston. Does anyone out there know of any support
groups
> for Noonans parents in the Dallas area? We are anxiously waiting
on
> the results of the first genetic test for the PTPN11, but I know
the
> test is pretty unreliable. Chloe has many of the physical
> characteristics of NS, so can a diagnosis be made strictly on the
way
> a person looks? Is there anyone out there with NS who also had a
> cystic hygroma? Chloe has an AV canal heart defect, a cystic
hygroma
> as well as many of the other facial characteristics. Any words of
> wisdom from parents of children and/or people with NS would be
greatly
> appreciated. My husband and I are overwhelmed and anxious. Thanks
> very much!
>
Hello and Congratulations! I have a suggestion for the colic. I had to feed my son formula (failure to thrive, poor latch for nursing, etc.) and after TONS of research and trial and error, I found ONE formula to work like magic. It is organic and made with Barley Syrup rather than Corn Syrup. Apparently, corn is one of the hardest things on digestion for many people...especially little ones who's digestion is slower and less developed than others. It is called 'Baby's Only Organic Dairy Based Iron Fortified Toddler Formula'. They label it Toddler Formula to encourage mom's to first breast feed if possible, but after comparing its contents side by side with every other market product, including the formula our specialists pushed for (at $49 per can from London, England! ) I SWEAR by this. The relief was immediate. Seriously, within the first couple of days. I boost it with Polycose protein powder from the docs.
Well, I hope this little info might be of some help...the change in our baby was the biggest relief. As far as the test results, I'm sure you've already heard how unpredictable the results can be (when positive, only 50% will show up as positive...etc.) I wish your little sweatpea lots of love and good health. My best to your family. Any questions, feel free to email! -Madeline (mom to Henry, age 2 1/2)
robyn <blackrosebud0102@...> wrote:
Hi I am a 1 st time mother with a daughter that is in
the prosseces of being diagonsed with N.S. her father has it so im hoping that if she does have it she doesnt have the problems he does or that her cousin does....It is in 3 generations of his family and i have been told that she will most likely have it...She is having the growth issues and the in caved chest,the colic and everything so im hopeing they find out what is wrong with her so we can get it fixed....Anyone have any suggestions for me....
Hi I am a 1 st time mother with a daughter that is in the prosseces of
being diagonsed with N.S. her father has it so im hoping that if she
does have it she doesnt have the problems he does or that her cousin
does....It is in 3 generations of his family and i have been told that
she will most likely have it...She is having the growth issues and the
in caved chest,the colic and everything so im hopeing they find out
what is wrong with her so we can get it fixed....Anyone have any
suggestions for me....
Welcome and congratulations on the birth of Chloe! I understand your feeling overwhelmed and anxious. I suggest you join the main ListServ of The Noonan Syndrome Support Group - you'll find information at www.noonansyndrome.org. It's the most active of the online NS groups. I think you'll find that group to be very supportive and informative. To answer your questions, to the best of my ability . . . only about 50% of people who are diagnosed with Noonan Syndrome have the PTPN11 mutation. Smaller percentages have KRAS and SOS1 mutations. So, there are plenty of people with clinical diagnoses of NS who do not have one of the known mutations. The cycstic hygroma, cardiac issues, and physical characteristics may lead a doctor to give her a clinical diagnosis, but there are a few other syndromes with similar characteristics. I hope that your geneticist soon has answers for you.
Marla, mom to Sara (2, NS - PTPN11)
In a message dated 4/19/2007 10:34:49 P.M. Eastern Daylight Time, lameremere@... writes:
I have a beautiful 8 month old daughter named Chloe who will probably be diagnosed with NS. I say "probably" because she is in the process of being diagnosed, but hasn't received a definitive diagnosis yet. We live in Dallas, but take her to doctors at Texas Children's Hospital in Houston. Does anyone out there know of any support groups for Noonans parents in the Dallas area? We are anxiously waiting on the results of the first genetic test for the PTPN11, but I know the test is pretty unreliable. Chloe has many of the physical characteristics of NS, so can a diagnosis be made strictly on the way a person looks? Is there anyone out there with NS who also had a cystic hygroma? Chloe has an AV canal heart defect, a cystic hygroma as well as many of the other facial characteristics. Any words of wisdom from parents of children and/or people with NS would be greatly appreciated. My husband and I are overwhelmed and anxious. Thanks very much!
I have a beautiful 8 month old daughter named Chloe who will probably
be diagnosed with NS. I say "probably" because she is in the process
of being diagnosed, but hasn't received a definitive diagnosis yet.
We live in Dallas, but take her to doctors at Texas Children's
Hospital in Houston. Does anyone out there know of any support groups
for Noonans parents in the Dallas area? We are anxiously waiting on
the results of the first genetic test for the PTPN11, but I know the
test is pretty unreliable. Chloe has many of the physical
characteristics of NS, so can a diagnosis be made strictly on the way
a person looks? Is there anyone out there with NS who also had a
cystic hygroma? Chloe has an AV canal heart defect, a cystic hygroma
as well as many of the other facial characteristics. Any words of
wisdom from parents of children and/or people with NS would be greatly
appreciated. My husband and I are overwhelmed and anxious. Thanks
very much!
Amanda im praying for you and Dalton God will send help just ask.
>
> Yeah, I would to find out how to stop this spam person.
>
> I haven't been on for awhile because my son has been sick. The
Doctor
> had told me that my son's heart is getting worse and there is
nothing
> he can do to help him. He also told me that my son may leave me any
day
> now. I sat there not knowing what to say. I just couldn't beleive
he
> said that to me.
> I live in Ohio but if there is anyone may know a Doctor that you
think
> could help my son please tell me. The problems with my son's heart
is
> PULMONARY VALVE STENOSIS, ATRIAL SEPTAL DEFECT, and LEFT
VENTRICULAR
> HYPERTHROPHY.
>
>
> Mom of Dalton,
> Amanda
>
hello,
I bought from them you should give them a go too, very very affordable, upgrade
to vista or install office 2007 from http://www.softwaresonlineavb.info/yfeld
Also i would like to add - my son had several VSD's, Pulmonary
stenosis and the muscle thickening that is common with Noonans. They
were able to take away part of the thickened muscle when he had open
hear surgery to repair his valve. I don't think it was severe yet -
but without that surgery it would have evolved into that. His last
appointment was in October and the Dr said his heart is basically
a "Non-issue" it was music to my ears. I hope you can get some help
and maybe another opinion?
Take Care
Christina
--- In noonan_support@yahoogroups.com, "Amanda" <dollgril0@...> wrote:
>
> Yeah, I would to find out how to stop this spam person.
>
> I haven't been on for awhile because my son has been sick. The
Doctor
> had told me that my son's heart is getting worse and there is
nothing
> he can do to help him. He also told me that my son may leave me any
day
> now. I sat there not knowing what to say. I just couldn't beleive
he
> said that to me.
> I live in Ohio but if there is anyone may know a Doctor that you
think
> could help my son please tell me. The problems with my son's heart
is
> PULMONARY VALVE STENOSIS, ATRIAL SEPTAL DEFECT, and LEFT
VENTRICULAR
> HYPERTHROPHY.
>
>
> Mom of Dalton,
> Amanda
>
Hello Amanda, I am so sorry to hear about your little boy. We live in
Colorado and are very lucky to have The Childrens Hospital here. They
have an excellent Heart Institute and the hospital is rated in the
top 10 overall - i think number 7 last year. My sons cardiologist is
Dr Kak-Chen Chan and his heart surgeon was Dr Francois Lacour-Gayet.
They are wonderful and i am so grateful to them for everything they
have been able to do for my son. I know it would be far for you to
travel but maybe you can see if they can help you?
here it the website:
http://www.thechildrenshospital.org/conditions/heart/index.aspx
Take Care
Chris
--- In noonan_support@yahoogroups.com, "Amanda" <dollgril0@...> wrote:
>
> Yeah, I would to find out how to stop this spam person.
>
> I haven't been on for awhile because my son has been sick. The
Doctor
> had told me that my son's heart is getting worse and there is
nothing
> he can do to help him. He also told me that my son may leave me any
day
> now. I sat there not knowing what to say. I just couldn't beleive
he
> said that to me.
> I live in Ohio but if there is anyone may know a Doctor that you
think
> could help my son please tell me. The problems with my son's heart
is
> PULMONARY VALVE STENOSIS, ATRIAL SEPTAL DEFECT, and LEFT
VENTRICULAR
> HYPERTHROPHY.
>
>
> Mom of Dalton,
> Amanda
>
I would love to provide you with another couple of support groups that
I am also with, that I think you would find are far more active and
beneficial than this yahoo support group (not that this support group
is not great when it IS active).
The first is the "official" NS Support Group. They have a web page as
well as a mailing list. Their web site address is
http://www.noonansyndrome.org
and it is a very active and informative
list with lots of members.
The other site I suggest you visit and join the mailing list for is the
'Children's Cardiomyopathy Foundation' website. Their web site address
is http://www.childrenscardiomyopathy.org
It sounds like the left ventricular hypertrophy is a form of
cardiomyopathy that some of the members experience and they also have
many members and a wealth of support and information available.
My son was also born with NS, Pulmonary Valve Stenosis, ASD and HCM
(Hypertrophic Cardiomyopathy). He has had open heart surgery for the
PVS and had his pulmonary valve removed and a patch put in. He will at
some stage in the future need a replacement pulmonary valve put in but
at this stage he is doing really well.
I have so much knowledge and support in my head that I could share with
you regarding the heart problems that both your son and my son have. I
will tell you though that there is always light at the end of the
tunnel. All of the conditions that you mention your son has with his
heart can be fixed by surgery, so I am at a loss as to why the doctors
are telling you that you may lose him any day. Has he had any heart
surgeries yet? Would you be willing to give me lots more information
on what your son has and what he has been through? Feel free to email
me privately at any time. I am a member of this list as well as a
member of both the groups above that I mentioned.
Support is out there for you, so hang in there. I would dearly love to
hear back from you and await your reply.
Jenni (Mum to Lachy 2 years NS & HCM, Lauren 12, Scarlett 8 and
Haydon 7 - Australia)
Amanda wrote:
Yeah, I would to find out how to stop this spam person.
I haven't been on for awhile because my son has been sick. The Doctor
had told me that my son's heart is getting worse and there is nothing
he can do to help him. He also told me that my son may leave me any day
now. I sat there not knowing what to say. I just couldn't beleive he
said that to me.
I live in Ohio but if there is anyone may know a Doctor that you think
could help my son please tell me. The problems with my son's heart is
PULMONARY VALVE STENOSIS, ATRIAL SEPTAL DEFECT, and LEFT VENTRICULAR
HYPERTHROPHY.
As I reflect on the past 2 1/2 years with my son Henry and all that my
family has learned and experienced since he has joined our
family...well, I would like to raise my imaginary glass of Champagne to
all of my fellow sisters and brothers who continue on in spite of the
heartache and uncertainty. I would like to believe that the lesson in
all of this 'not-knowing' is in the discovery of what is truly
important...the smiles, laughs, and embraces that we are lucky enough
to share with our little ones. As for me, I can honestly say that the
past few years have brought a clarity to the joys I experience that I
never fully appreciated prior. I wish we all had more time to chat and
share information...but the fact is, we are all probably busy just
hanging in there. In closing, I am proud to be among such a strong and
loving group of parents. This course we are on is by far more
complicated and difficult than most, but with such beautiful views from
time to time. My best to all of you. -Madeline (mom of Henry age 2 1/2
in Eugene, Oregon)
Gosh...I am by no means a cardiologist...but my son Henry's heart sounds quite similiar. He too has PVS and ASD. I think that might be it...but he is scheduled for open-heart surgery on July 10th. He is 2 1/2 years old. I would love to pass on your info to our cardiologist if you would like. I absolutely love him, and I consider myself to be very hard to please when it comes to care for my baby. We are moving back to Portland just to be close to Doernbecher Hospital where Dr. Reller works. My only suggestion (as if you haven't received enough already...), is to listen to your heart. If you feel that Dalton is strong enough to go on a bit longer, you need a new doc. This whole journey with Henry has taught me to listen to my intuition. When his feeding specialists said it was 'okay' for him to throw up everything he ate...just part of the syndrome...I knew there was a reason he couldn't digest the prescribed
formula and I fought the docs and found an alternative that didn't upset his system and sure enough, he improved. The heart surgery is scary of course, but Henry has become so strong otherwise that I believe he can fare this as well. I often wonder why I was dealt the heartbreaker card with him...and honestly, I have learned how to love on such a deeper level than I think would've been possible without him. The care up in Portland is exceptional...Doernbecher is a leading hospital in the country. If you and your family ever decide to pack up and move where there might be more support, look me up. My best to you and your family. Take care...pretty amazing how bittersweet this motherhood thing can be at times, hmm? -Madeline
Amanda <dollgril0@...> wrote:
Yeah, I would to find out how to stop this spam person.
I haven't been on for awhile because my son has been sick. The Doctor had told me that my son's heart is getting worse and there is nothing he can do to help him. He also told me that my son may leave me any day now. I sat there not knowing what to say. I just couldn't beleive he said that to me. I live in Ohio but if there is anyone may know a Doctor that you think could help my son please tell me. The problems with my son's heart is PULMONARY VALVE STENOSIS, ATRIAL SEPTAL DEFECT, and LEFT VENTRICULAR HYPERTHROPHY.
See I still have PS and I am 25 years old. I go to the doc quite a bit so it does not get that bad I don't live in ohio so I would not know of any in that area. but Michigan is not that far and we have some good docs up here I went to the U of M and they seem to know a lot over there.
In a message dated 4/14/2007 12:33:29 P.M. Eastern Standard Time, dollgril0@... writes:
I live in Ohio but if there is anyone may know a Doctor that you think could help my son please tell me. The problems with my son's heart is PULMONARY VALVE STENOSIS, ATRIAL SEPTAL DEFECT, and LEFT VENTRICULAR
Hi
I spent my childhood in Lima and went to Cleveland Clinic annually . Maybe they have some recommendations of doctors ? I have pulmonary stenosis, until I was 6 had a hole in the middle chambers so the oxygenated and unoxygenated blood would mix. I just recently saw my cardiologist and he told me that he very rarely sees patients with what I have. I googled PS and it doesn't seem all that rare. But then of course when I went to Cleveland I would regularly have 15-20 interns checking me over. I just though that was normal considering that it was a teaching hospital. I'm approaching 50 now so I would think that with all the advances in medicine that somewhere there must be docs who could help. I had surgery for the stenosis when I was 18.
Yeah, I would to find out how to stop this spam person.
I haven't been on for awhile because my son has been sick. The Doctor
had told me that my son's heart is getting worse and there is nothing
he can do to help him. He also told me that my son may leave me any day
now. I sat there not knowing what to say. I just couldn't beleive he
said that to me.
I live in Ohio but if there is anyone may know a Doctor that you think
could help my son please tell me. The problems with my son's heart is
PULMONARY VALVE STENOSIS, ATRIAL SEPTAL DEFECT, and LEFT VENTRICULAR
HYPERTHROPHY.
Mom of Dalton,
Amanda
I am always excited to see a new message in this group - then
immediately let down when it is some lame spam. This is a support
group for Noonans Syndrome - why is it being used for advertising the
worst possible spam? Find another place to go!!!!!!!!!!!!!
you can now officially call me Dr. :) Took me about 2 months,
but after calling these guys 770 621-2634 they helped get me setup and
get fully
accredited! Great people.
Just got my BA and i did not even have to go to the campus for 1
day! Just got a
tip from a friend and gave these guys a call 770 621 2634, completed a
small amountof paperwork and within a mere 4 weeks I was completely accredited
at an internationally Uni! Now I am about to start applyin for some new jobs.
Just got my BS and i wasnt even required to turn up! Just called these people 770 621-2634, filled out a few forms and a bit of paperwork and was accredited within 3 weeks at an internationally recognised Uni! How good is that!
Just got my BS and i wasnt even required to turn up! Just called these people 770 621-2634, filled out a few forms and a bit of paperwork and was accredited within 3 weeks at an internationally recognised Uni! How good is that!
Just got my BS and i wasnt even required to turn up! Just called these people
770 621-2634, filled out a few forms and a bit of paperwork and was accredited
within 3 weeks at an internationally recognised Uni! How good is that!