http://www.mdjunction.com/forums/noonan-syndrome-discussions/feed http://www.mdjunction.com/forums/noonan-syndrome-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Tue, 21 May 2013 13:03:25 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/10237807-growth-hormone-therapy#10272861 Hi, I understand your concern. Both of my children have Noonan Syndrome, and both of them are on growth hormone. When it came time for me to decide what I was going to do, I researched and asked everyone I possibly could. I am a nurse, so of course I asked every doctor I ran across. The response I got from every physician was to proceed with the growth hormone. If not,there would be a good chance that my children would not grow past 4 feet in height, which, considering that when they are ol... Wed, 21 Nov 2012 06:09:57 -0800 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/10171698-tons-and-tons-of-questions#10171698 Hello! First off my name is Laura Jeffcoat. I am the lucky momma to Hailee she will be 2 on October 24th. Hailee was recently diagnosed with Noonans and Costello disorder. I have no idea where to start for her. What help she needs. I JUST DONT KNOW!!! A bit of Hailees history: She was born with CHD (Supravavluar Pulmonary Stenosis) Cath procedure 2/28/2011 and open heart surgery 5/24/2011. She is the most amazing and loving little girl. at daycare Hailee does NOT like other kids in her bubble. S... Sat, 13 Oct 2012 10:24:39 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/10017290-advice-please#10017290 My 5 yr old daughter was diagnosed with noonan syndrome in july 2012. We have appts coming up with genetics and endocrine. They want to start her on human growth hormone. Can someone please tell me what to expect next esp since she starts kindergarden on Wednesday. Any advice would be appreciated... Sat, 18 Aug 2012 07:07:50 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/3107789-my-grandson-was-diagnosed-with-noonans#3130908 Thank you for your prayers.. How is your neice doing? I would love to hear othes share on the development of the child with NS. We will be having a home visit with a developmental specialist to see if he quailifies for the 0-3 month program to help him us to meet his milestones. I'm 99.9% he will qualify! ~He is soooo loved!... Sun, 16 Oct 2011 09:48:46 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/1522774-noonan-syndrome#3059222 I would love to help you....though I fear I might not be of much help, as I have recently taken custody of my neice, Deja, who has NS. She is 8 years old and I am just learning all about this and learning how to deal/raise/take care of and child with NS. If I can be of help to you....let me know. Candy... Fri, 16 Sep 2011 18:34:52 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/2248434-hello-from-mass#3059221 Im right with you Heather. I recently got custody of my neice who has NS. She is 8...and like you..I have sooo much to learn. I too was glad to see a online support group. Best wishes to you....and best of luck. Hopefully we can learn together. Candy... Fri, 16 Sep 2011 18:31:53 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/introductions-personal-stories/3059216-my-child-noonan-syndrome#3059216 Hello, my name is Candy. My neice, Deja is 8 years old and was recently in the CPS custody. I have recently taken Deja into my home, into my life. If I have the chance, I will adopt Deja. Deja is a very loving child with Noonan Syndrome. I had never heard of this until Deja came along. I never checked into it until getting her into my home. I want to know all about NS and what I need to do to help Deja grow. We love Deja and Deja is now a part of this family. I need to be able to take care of he... Fri, 16 Sep 2011 18:29:04 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/2898556-craniosacral-therapy#2898556 [file] :whistle: My son was just diagnosed with Noonan Syndrome and he is four. As you can imagine this brings a lot of questions and the sense of feeling overwhelmed. He has seen so many doctors since he was 6 months old. In addition to the doctors and therapists, I am raking him to a massage therapist who performs cranioSacral therapy on her clients. She even works with her own grandson who is autistic. I would like to know if anyone has had any experience to this relaxing, noninvasive ... Thu, 14 Jul 2011 10:29:09 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/2505598-noonan-syndrome-videos-on-mdjunction#2517902 Hi - it's me again... I got many PMs from members asking to upload their own videos. At this point we can't add to the library . but hope we will be able to soon, we understand the importance of that! and another (not related) topic...Two weeks ago we added to the (now available on chrome too) the Groupon application that shows you the hottest daily deals in your town, every day. We received great feedback from the people using the toolbar so I suggest trying it out!!! CU roy... Wed, 09 Mar 2011 03:23:30 -0800 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/2117816-hi-im-from-singapore#2117816 Hi i'm serene from singapore. currently my 19mths old son jayven suspect to be down with noonah's syndrome. currently his left side of the hearing is lost. i wish to know more of this syndrome and what i can do for him as over @ my country, this type of disease is rare. please reply as i despratly need advice. tks !!... Thu, 18 Nov 2010 20:01:54 -0800 http://www.mdjunction.com/forums/noonan-syndrome-discussions/introductions-personal-stories/1530054-noonan-syndrome#1540530 Hello, thanks for responding. Basically I would like to know about some of the symptoms of the disorder in a specific case. I would like to know about some things a patient physically can and can't do. Is the disease just physical ailments, or can it affect mental ability as well? Just any information that can help me learn more about the disorder. Again, thank you.... Fri, 28 May 2010 14:52:17 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/introductions-personal-stories/241881-intro#1380170 Hey, Thanks for posting. My son doesn't have a diagnosis either but am hoping maybe next month. Wondering about starting growth hormone. He doesn't to date have any heat abnormalities either but issues with very low muscle tone, coordination, double-jointed. One geneticist when my son was 2 (he is now 10) suggested Noonan's as most likely but we haven't gotten anywhere since then other than a diagnosis of anxiety and SPD. It has been my gut and others that have met or know my boy for years. I ... Mon, 05 Apr 2010 11:01:35 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/introductions-personal-stories/1375332-son-with-noonons-likely#1375332 My 10 year old has always had multiple symptoms that make him a likely candidate for Noonan's but to date we do not have an actual diagnosis. He does have SPD with anxiety. Yesterday he got so angry over something he said I promised (that I did not - ice cream before dinner) that he was threatening me with utensils and tried to grab a hot pot on the stove but backed off because it was too hot. I have heard stubbornness and low frustration level can come with Noonan's. Not sure how to deal...... Sat, 03 Apr 2010 14:37:19 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/875774-education-guidance#875774 I am looking for assistance on the best course of education for a child entering pre-school age with Noonan Syndrome. In general, he is about 6 months behind where he should be and interacts very well with children his age and older by really trying to hold his own and get involved in whatever they are doing. The state feels he should be put into a special school with autistic children, because they have never heard of Noonan Syndrome and don't know any other way to deal with this situation.... Mon, 28 Sep 2009 05:30:37 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/introductions-personal-stories/183676-my-1-year-3-month-son-has-noonan-syndrome#183676 Hi im Alakanani just call me Alah. i live in botswana -africa and my son has noonan syndrome. I really need assistance because i dont know how i can help my son because he is the first case of noonan syndrome in botswana ever attended by a doctor.most doctors dont know about it and i struggle in raising. how do the babies with noonan grow? are they as thin as my son(with heart condition) he is just learning how to crawl,learning to stand holding things. is he gonna walk? pleas assist me... Thu, 09 Oct 2008 01:26:13 -0700 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/17877-welcome-to-the-noonan-syndrome-support-group#17877 Hello, Welcome to the Noonan Syndrome Support Group. This Support Group is a comfort place for family members and friends to share and ask questions regarding Noonan. Feel free to introduce yourself, ask your questions and be around people who are in your spot. We'll be happy to hear your thoughts on how to make this better. Best, roy... Wed, 21 Nov 2007 03:22:16 -0800 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/17876-making-the-most-of-the-noonan-syndrome-support-group-experience#17876 The Noonan Syndrome Support Group is full of ways to interact and share your knowledge and experience. It's your chance to be around people who are dealing with the same issues as you do and understand you best. The Noonan Syndrome Support Group has 3 main discussion topics. You can explore them by clicking the link on the left. As this group just started we'll need people to jump start it and make it as productive as other groups on this site are. To get an idea you can visit the or the on... Wed, 21 Nov 2007 03:22:15 -0800 http://www.mdjunction.com/forums/noonan-syndrome-discussions/general-support/17875-how-to-join-the-noonan-syndrome-support-group#17875 OK. The No. 1 of all No.1 questions ;-) "I can't seem to be able to respond to a post", "why can't I start a new discussion?". At the top right of any page in the support group you'll see a button for "join this group". Once you press it, you're automatically a group member and able to join the discussions. Try it ;-) now! Waiting for No.2, Any more questions? Best, Alon... Wed, 21 Nov 2007 03:22:14 -0800 http://www.mdjunction.com/forums/noonan-syndrome-discussions/introductions-personal-stories/17874-technical-stuff-related-to-the-noonan-support-group#17874 Hi , I'm Alon, nice to meet you all ;-) I'm in charge of all the technical stuff around the site and the support group. If you have any problem, want to ask a technical question or would like to suggest a new addition to the Noonan group – please contact me (via PM). I hope to CU here a lot. Sincerely, Alon... Wed, 21 Nov 2007 03:22:13 -0800 http://www.mdjunction.com/forums/noonan-syndrome-discussions/introductions-personal-stories/17873-hello-noonan-syndrome-support-group-im-roy#17873 Hello, My name is Roy. Alon and I run MDJunction. We hope that the Noonan Syndrome Support Group will grow into a real meaningful place for all of you, as other groups in MDJunction are (you can see the as an example). We are here to help in any way we can. Enjoy, roy... Wed, 21 Nov 2007 03:22:10 -0800