Any mommas with a child with Noonan's Syndrome? - Mothering Forums

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#1 of 21 Old 10-11-2010, 05:23 PM - Thread Starter
 
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Hi everyone: I'm new to the board - my 2 year old daughter was diagnosed with Noonan Syndrome earlier this year. She has a g-tube, had open heart at 9 months, and has some delays but is talking up a storm, walking and generally doing pretty well.

I was hoping to connect with other moms of kiddos with this diagnosis.

Thanks so much!
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#2 of 21 Old 10-11-2010, 06:31 PM
 
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I know I've seen someone post here about it before, so hopefully she will be around soon! If I remember correctly, her son is about 9?? Try a forum search

Welcome! I hope you stick around, this is a great group!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#3 of 21 Old 10-11-2010, 07:16 PM
 
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I thought it was Abimommy who has a child with Noonan Syndrome. Am I remembering this wrong? Welcome to the board. My dd has a different syndrome but there is probably some overlap. I love this place and have found it a great resource. There is a post your child's diagnosis thread on here, you might want to read through it to see if anyone else posted about noonan syndrome.
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#4 of 21 Old 10-11-2010, 07:19 PM
 
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#5 of 21 Old 10-11-2010, 07:23 PM
 
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My youngest is 18 months and has Noonan's Syndrome - S0S1 mutation! We're lucky and he has a mild case of it so hasn't had any major eating/heart issues.

Are you a part of the Noonan's List-serve group? It's pretty active and has lots of good information.

Welcome!
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#6 of 21 Old 10-12-2010, 12:20 AM - Thread Starter
 
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Thank you so much for the welcome everyone! I did a search and found some mommmas but they hadn't logged in in like 2 years....

Devon - thank you for sharing your story! Kate is PTPN11 mutation. I just joined the community on The Noonan Syndrome Support Group - is that what you're talking about?

It's been quite the journey with Kate but I have a lot of hope that she'll get caught up on everything!
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#7 of 21 Old 10-12-2010, 09:43 AM
 
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Here is the support list-serve:
http://home.ease.lsoft.com/scripts/w...OONAN-SYNDROME

You can click on the "Subscribe" button and then sign up.

Has she started any kind of therapy? Matthew had OT/PT since 8 months and then switched to PT/OT at 14 months and that has been WONDERFUL for him. He's really made great progress and is starting to walk now!
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#8 of 21 Old 10-12-2010, 02:08 PM
 
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Welcome aboard! The mamas here have resources for everything, I'm sure even if not the same diagnosis you'll find lots of support here!

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
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#9 of 21 Old 10-12-2010, 10:00 PM - Thread Starter
 
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Thank you for the link!

On therapies - oh gosh yes LOL - she's been in therapies almost since day one. She has been in feeding since the g-tube was placed at 4 months. She has had physical therapy since 6 months - I do think it's helping. She can walk but not run (she can walk really fast LOL), and she can't jump with 2 feet. She is also in swimming which she LOVES.

She has received speech therapy as well, but we just moved to a new state and her new center felt she did not qualify for speech. She does receive cognitive support, but does seem to be pretty much on track and I think she's a smart cookie.

She does have minor facial features but the geneticist we just saw at Children's said that if he didn't know about her diagnosis, he might not know she has it if he just saw her walking down the street....

We still have a lot of unknown with her but she seems to be doing pretty well right now!

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Originally Posted by devon View Post
Here is the support list-serve:
http://home.ease.lsoft.com/scripts/w...OONAN-SYNDROME

You can click on the "Subscribe" button and then sign up.

Has she started any kind of therapy? Matthew had OT/PT since 8 months and then switched to PT/OT at 14 months and that has been WONDERFUL for him. He's really made great progress and is starting to walk now!
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#10 of 21 Old 10-12-2010, 10:05 PM
 
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Yes, Abimommy's son does have Noonan's. Send her a PM.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#11 of 21 Old 10-12-2010, 10:06 PM
 
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Also,

Welcome!

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#12 of 21 Old 10-12-2010, 11:54 PM
 
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Hello!!

Welcome to Mothering!

My son does have Noonan. He also has the SOS1 mutation which tends to have a less severe presentation. He has had some OT for some low muscle tone and he had some eating issues early on but it seems like we are doing ok in that department for now. He isn't eating a lot of solids, he mostly nurses. I do worry about him getting enough calories when he eats solids, he has issues gaining when he eats things that are not very calorie dense. He loathes any sort of dietary supplement and won't touch them.

He does have some heart defects but he hasn't needed surgery. He has Von Willebrand which is a bleeding disorder.

He does have the enamel issues on his teeth so we are going to have to get some crowns it looks like. He is also going to have to have surgery on his testicle which hasn't descended yet.

He is a pretty little guy but makes up for it with a very forceful personality. He is very bossy and ornery. There are some pictures of him in my profile http://www.mothering.com/discussions...php?albumid=12.

I guess my son does have the facial features, he was pretty much diagnosed when he was born. I had out of control severe polyhydraminios and they had someone from the Children's hospital consult and he told us he thought it was Noonan as soon as he saw him. (I was actually offended to be told his features are indicative of a genetic issue, he looks like my family )

It is likely that it is not a mutation that occurred with him. They believe that other people (likely me ) in my family also have it. I have some cousins on my paternal grandfather's side that had some more severe heart defects. My son is the first time we got a diagnoses like that.

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#13 of 21 Old 10-13-2010, 01:43 AM - Thread Starter
 
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Thanks so much for the reply! I can't see your cutie's photos - probably because I don't have enough posts yet? It says I don't have permission...

So it's possible that you have it also? Wow! We know for a fact that DH and I don't have it - LOL we're both over 6' tall...

Kate also has a VERY forceful personality! My sister in law likes to say that she's this tiny little person but she is a FORCE to be reckoned with...
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#14 of 21 Old 10-13-2010, 02:26 AM
 
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Quote:
Originally Posted by Jack*and*Kate View Post
Thanks so much for the reply! I can't see your cutie's photos - probably because I don't have enough posts yet? It says I don't have permission...

So it's possible that you have it also? Wow! We know for a fact that DH and I don't have it - LOL we're both over 6' tall...
I am 5 foot 2 and one of the taller people in my family. We don't have any tall genes at all. My husband's family is even shorter than mine.



Quote:
Kate also has a VERY forceful personality! My sister in law likes to say that she's this tiny little person but she is a FORCE to be reckoned with...
She sounds like an awesome little girl

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#15 of 21 Old 04-07-2011, 10:52 PM
 
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Hi i am not a mom but i myself have Noonan syndrome and i am about to be 21. i had trouble in school and grasping things when i was younger. if you ever want to talk you can e-mail me at un1uq3@yahoo.com i can tell you alot about it and i can help you out on what to expect but just know every child is different.

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#16 of 21 Old 06-21-2011, 11:06 AM
 
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Hi. I know it has been awhile since anyone posted here about Noonan's Syndrome, but I hope somebody sees this. I had a son 22 years ago that was diagnosed with Noonan's Syndrome. Unfortunately he had severe heart defects and only lived 8 weeks.  18 Months later I gave birth to my daughter who is now 20 years old. She has a minor heart defect but otherwise healthy. Thank God. I lost a pregnancy in the sixth month three years later and was informed that this baby also had Noonan's. So I know it is somewhere in either mine or my husband's family but do not know where. I am amazed how much more information in available then there was 22 years ago. Anyway the reason I am writing is, my Niece is getting married in November and they have decided that in lieu of buying wedding favors for their guests, they would like to donate the money towards either a support group or perhaps a family with a child with Noonan's who could use the help. This won't be a donation of great magnitude, but will be generous. If anyone can send me in the right direction, I would truly appreciate it. 

Thanks,

Chris

A Very Proud Aunt

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#17 of 21 Old 06-26-2011, 06:56 PM
 
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The main organization that I know of is The Noonan Syndrome Support Group (TNSSG) - http://www.noonansyndrome.org/giving.htm

 

that is wonderful that your niece and her fiance are doing that.  what a nice thing.

 

Devon

 

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#18 of 21 Old 07-15-2011, 10:37 AM
 
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Thank you for your help Devon.

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#19 of 21 Old 01-16-2013, 04:35 PM
 
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My son is 7 months old and was Diagnosed early on. He has the PTN11 mutation and has a pulmonary heart stenosis and ASD and luckily he doesn't need any immediate medical treatment for it. He is small and had feeding issues from the beginning but is doing well with eating solids. I had an evaluation with the early intervention program and they said that he is a little behind in the speech department and motor skills like crawling and being able to sit up on his own. For the most part he seems to be a normal baby. He is short and has the low set ears...which most people do not notice since my husband and I are Asian and I have big ears as well. No known genetic issues on both sides of the family but we have not been formally tested. I'm here because my son luckily seems to only show mild physical signs of the syndrome but I'm afraid and concern on what to expect later on. I would like to hear from moms with sons who have noonans and their stories on how to cope with their developmental delays. Only my immediate family members know of his condition because I don't want people to look at him and treat him differently.
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#20 of 21 Old 01-27-2013, 08:43 PM
 
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My daughter Layla, 2, has the PTPN11 mutation and was initially diagnosed with Noonan in November 2012, but in December her dx was changed to LEOPARD Syndrome. She has has very severe feeding issues, very developmentally delayed, hypotonia, her EKG showed difference so we meet cardiology in Feb, and she's on growth hormone injections, and also has an unrelated rare brain cyst. Needless to say it has been a long two years to finally have a diagnosis, but still so much unknown. Noonan and LEOPARD are very similar other than the higher risk of hear issues and hearing loss with leopard and also her cafe ole spots and freckles she has now and will continue to develop. Because LEOPARD is so rare, only a few hundred documented cases, we will follow Noonan care plan with extra Cardio focus.
Any parents with a kiddo with NS that would like talk i would love the support, advice, ...
Thank you
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#21 of 21 Old 01-30-2013, 01:14 PM
 
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Check out the Facebook group - Noonan Syndrome Family - https://www.facebook.com/groups/noonanfamily/  It is definitely the most helpful group I have been a part of.

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