There is a possibility that my nine year old grandson will be offered growth hormone treatment. I believe it is a fairly new approach for Noonan’s children. Is there any information or contacts you could provide?
The use of growth hormone has now been approved by NICE for Noonan Syndrome, and they recommend its use from when the child is 4 years old. Their updated guidelines are here: https://bnfc.nice.org.uk/drug/somatropin.html. You might also want to look at the NovoNordisk ‘More than Height’ website, which contains information about children taking growth hormone for NS: https://morethanheight.com/en/growth-disorders/types-of-growth-disorders/noonan-syndrome-ns/. NovoNordisk is the pharmaceutical company that makes the growth hormone.
We held a webinar in October 2021 which covered growth hormone and treatments for children with NS. Our guest speaker, Professor Mahel Dattani, is a paediatric endocrinologist at Great Ormond Street Hospital. A recording of this webinar can be found on our website.