HELLO,

 I RECEIVED YOUR LETTER THROUGH, BEING ON THE NOONAN WEB SITE.I TO HAVE A SON WITH NOONAN SYNDROME/ HEART DEFECT. I WANT TO KNOW MORE ABOUT THIS JMML. WHAT IS IT AND HOW COULD I TELL IF MY SON MIGHT HAVE THIS. MY SO IS NOW 21YRS OF AGE, BUT I WOULDN'T BE SURPRIZED IF IT WEREN'T TRUE.MY SON HAS HAD AN ELAVATED WHITE BLOOD COUNT, BUT THE DOCTORS HERE DO NOT HAVE ENOUGH INFO ON NOONAN SYNDROME. I DO KNOW THAT HE IS SICK OFTEN AND HAS A VERY HARD TIME RECOVERING . I AM WORRIED. PLEASE WRITE BACK. I WOULD LIKE TO KNOW IF THIS TOO IS ONE OF MANY ISSUES THAT THIS SYNDROME HOLDS.

A CARING PARENT. DEBRA FINLEY

>From: "bailblue" <bailblue@...> >Reply-To: noonan_support@yahoogroups.com >To: noonan_support@yahoogroups.com >Subject: [noonan_support] Re: Lorraine >Date: Thu, 18 Nov 2004 15:23:00 -0000 >MIME-Version: 1.0 >X-Originating-IP: 217.137.100.33 >X-Sender: bailblue@... >Received: from n9a.bulk.scd.yahoo.com ([66.94.237.43]) by mc5-f6.hotmail.com with Microsoft SMTPSVC(5.0.2195.6824); Thu, 18 Nov 2004 07:27:40 -0800 >Received: from [66.218.69.5] by n9.bulk.scd.yahoo.com with NNFMP; 18 Nov 2004 15:24:37 -0000 >Received: from [66.218.66.30] by mailer5.bulk.scd.yahoo.com with NNFMP; 18 Nov 2004 15:24:37 -0000 >Received: (qmail 67801 invoked from network); 18 Nov 2004 15:23:20 -0000 >Received: from unknown (66.218.66.217) by m24.grp.scd.yahoo.com with QMQP; 18 Nov 2004 15:23:20 -0000 >Received: from unknown (HELO n10a.bulk.scd.yahoo.com) (66.94.237.44) by mta2.grp.scd.yahoo.com with SMTP; 18 Nov 2004 15:23:20 -0000 >Received: from [66.218.69.5] by n10.bulk.scd.yahoo.com with NNFMP; 18 Nov 2004 15:23:01 -0000 >Received: from [66.218.66.112] by mailer5.bulk.scd.yahoo.com with NNFMP; 18 Nov 2004 15:23:01 -0000 >X-Message-Info: JGTYoYF78jGJEE+s+qHakl8+UNyY6j1G >X-Yahoo-Newman-Property: groups-email >X-Apparently-To: noonan_support@yahoogroups.com >User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-eGroups-Remote-IP: 66.94.237.44 >X-Yahoo-Profile: bailblue >Mailing-List: list noonan_support@yahoogroups.com; contact noonan_support-owner@yahoogroups.com >Delivered-To: mailing list noonan_support@yahoogroups.com >Precedence: bulk >List-Unsubscribe: <mailto:noonan_support-unsubscribe@yahoogroups.com> >Return-Path: sentto-1077184-20-1100791401-debrafinley777=hotmail.com@... >X-OriginalArrivalTime: 18 Nov 2004 15:27:40.0806 (UTC) FILETIME=[24627A60:01C4CD83] > > >Hi Beth, > >I've just been reading Zachary's caringbridge page. I logged onto >jmml webpage and saw one of your messages. How strange that you >should be sending me a message at the same time!!! > >Bailey also hasn't had any treatment for his jmml and even thou I >would love him to be one of the transient children, I don't think I >could cope with the constant worry that one day it would progress >into aggressive jmml. >Do you know where I could find out more info about the 10% of >children. Our consultants have never mentioned it to us, just >Benedicte (Thomas's mum). If I knew abit more about the facts and >figures maybe I could rest more easier. > >That would be great if you could get me a growth chart. I will e- >mail you my home address if you manage to get one. > >Love Lorraine xx >Mum to Bailey (7 mths, jmml and noonan's), also Charlie (5 yrs) >www.caringbridge.org/ok/bailey > >--- In noonan_support@yahoogroups.com, "Beth" <zack082503@t...> wrote: > > > > 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 > > >