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Noonan Syndrome - anyone have dcs on growth hormone?

(3 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.

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