Hi 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.

Mom of Dalton,
Amanda