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Noonan Syndrome - anyone have dcs on growth hormone?

(6 Posts)
cantmakecarrotcake Wed 01-Jun-16 13:01:09

My 5.5yo dd has just been diagnosed with Noonan Syndrome - her major (only, hopefully) symptom being short stature (<95cm - way off the bottom of the normal growth curve for girls). Her paediatrician is going to put an application in for funding for (off-label) growth hormone treatment.

I just wondered if anyone has a dc with Noonan syndrome and whether a growth hormone application was successful. Also how has your dc responded to treatment?

TIA smile

missmapp Wed 01-Jun-16 13:14:35

Ds2 has noonans. He is on the 0.2nd percentile, but because he is okay on the noonans charts, he hasn't been offered GH. There is a facebook page to offer support to parents of children with noonans, I will try to find the link. some children on there have had GH and have responded well I think.
Hope all goes well, I think it is a bit of a postcode lottery, so at least your consultant is applying.

cantmakecarrotcake Wed 01-Jun-16 13:52:47

Thanks, missmapp, I found a copy of the Noonans charts in a paper the other day, I'll see where she sits on it - still quite low I think.

Our paediatrician is referring us to St George's in London so I'm hoping that'll add some weight to our application. I was just wondering what the decision was based on and how long it took.

I'll search for that facebook group, thanks.

Laurawitho79 Wed 15-Feb-17 22:23:13

Hi my 3 children all have noonans and my 2 eldest are in growth hormone with really good results

Inneedofaholiday2017 Thu 16-Feb-17 01:07:09

Who are you seeing at St. George's? The hospital has gone into special measures recently and it can be quite a mixed experience depending on who you see. Can you get referred to great ornond street or Evelina instead? They are much better children's hospitals but I'm not sure what expertise they have in your child's syndrone.

imadeamistake123 Sat 25-Feb-17 21:24:36

The child growth foundation supports parents of children with noonans and other conditions causing short stature. They have a support group. www.childgrowthfoundation.org/

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