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 was licensed by NICE for Noonan Syndrome in 2021, so it appears in appears in The BNFc – their prescription and drugs manual for children. They reviewed their guideline on the use of Growth Hormone in Children in 2022 and decided to not include Noonan Syndrome, so currently it is licensed but not offered to all as a recommended treatment. NICE recommends that if it is to be started, it is started at 4 years old. Their updated guidelines are here: NICE guidance. Their review decision is here: Evidence Review.
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.
