Hi I have two questions


#1

First question - I know the answer will probably be no; but is there any way I can help my son grow?

Second question - Is there a symbol for Noonan’s syndrome? Like the pink ribbon for breast cancer or the puzzle piece for autism? If not I was thinking of designing something I could do in different mediums so I could sell them and donate to Noonan’s research.
Maria


#2

Hi Maria,

In answer to your questions:

  1. It has been found that the majority of people with NS will lag behind and/or never reach the “average” height range - either during infancy or upon puberty. Some NS children have found benefit in taking HGH (Human Growth Hormone) supplements. Some children respond to it better than others, but it is usually a very individual outcome. Some children with NS can be completely growth hormone deficient, or not produce enough to aid their growth as normal. If you are not already under the care of an Endocrinologist with your son and are worried about his growth rate, I urge you to get a referral to one. Endocrinologists are experts in the field of glands and have very specialised experience with growth hormone and also with thyroid production (which is something else that they keep an eye on with NS patients). If you are already seeing an Endocrinologist, has he made any suggestions to you or discussed this with you at all? What is your sons current age, weight and height? There has been a weight and height chart developed specifically for NS children (showing the NS averages, not the general healthy population average) and I can provide you with one if you would like. I also urge you, if you havent already done so, to pay a visit to the official Noonan Syndrome web site. The address is http://www.noonansyndrome.org - you will find a wealth of information and knowledge on that site, and also can find information on how to join the official listserve mailing list, which is how they run their support group.

  2. I dont recall every seeing an official emblem of any sort, although the TNSSG (Noonan Syndrome Support Group I mentioned above) does have a logo on their page. They have also previously created and sold the rubber arm bracelets and also bumper stickers as fundraisers and they have proved very popular.

Dont hesitate to email me or post back here if you have any further questions.

(Jen, mum of 4 children, one with NS & HCM (Lachlan, 2 years old)


#3

The doctor is happy with his growth. He is growing just really slowly but steadily.
I would love the Noonan’s syndrome growth chart. I knew it existed but have not been able to find it.

I will keep looking into the symbol because I don’t want to do anything that might be illegal.
Maria


#4

Hi Maria

Our son has Noonans and is now in his 30s. Growth hormone was discussed when he was very slow growing but we did not go for it then because it was harvested from cadavers. Now it is synthetic and would have considered that as an option if available at time. Like many Noonans kids he did not stop growing until about 21 and is now a "small" adult about 5ft 8inches. His son is getting growth hormone now but it is early days so we do not know how well it is working.Noonans was diagnosed in grandson and further testing has shown that son shares syndrome but not his sister who is of a similar height. Noonans was not a diagnosis when he was young. He has grown out of his "heart murmer",is fit, now eats well,has a degree and is doing OK.

http://www.noonansyndrome.org is excellent for information and access to growth charts for Noonans kids.

best wishes

Spike


#5

I would also like the growth chart sent to me if possible. Doctors think my son may have noonans. He is very small for his age and I would like to see how I may reach his full height potential if he infact does have noonans. ANy assistance would be greatly appreciated. Thanks