My son is two years old and has Floating-Harbor Syndrome, which means developmental issues for bone structure, speech, height and weight.
I know this is a shot in the dark, but can anyone share info related to the topic? IGf-1 and IGf-3 knowledge would help too.
We had a meeting with the endocrinologist yesterday, but I’d like to make shure all the bases are covered.
Wow… sorry to hear… that’s VERY rare!
Whether or not your kid can get on GH is ultimately up to an endocrinologists interpretation of your childs predicted final adult height.
For instance, as a kiddo my predicted adult height was “5th percentile”. Had undiagnosed endocrine pathology at the time, never really went through a growth spurt. When put on TRT I actually grew a little bit (to my surprise as many of my epiphyseal plates were fused).
The problem is, men with floating harbour syndrome sometimes wind up at around 10-25th percentile in height. To get a GH prescription you need to be below the 2.5th percentile for final predicted adult height (I was SO close). Instead I was put on 7mg anastrazole p/w for years…
If I’d known what I know now, I would have purchased UGL GH. That is me… an individual who was willing to take risks as an adolescent, yet as a young adult I’m still willing to take risks many wouldn’t due to variables that are not relevant to this thread.
See what you can do, exhaust all avenues that are “by the book”. GH is expensive… but being short has serious psychosocial ramifications. I wound up being slightly taller than predicted (5’7)… and if I could travel back in time to take GH and make myself 5’9 I’d do it in a heartbeat
Results of GH therapy for short stature aren’t as good if the individual isn’t growth hormone deficient to begin with. It has been a long time since I’ve read the literature, but I believe dosages need to be slightly higher (comes with more risk) for non-GH deficient individuals with pathologically short stature.
Also, what constitutes 2.5th percentile differs from country to country. In the USA the average male height is 5’9, therefore a predicted final adult height of 5’5 isn’t going to cut it… In much of Europe where the average male height is 5’11-6’0… 5’5 likely qualifies for GH.
Wow, sorry. The endocrinologist obviously knows best and it’s good you guys caught this early
My parents put me on growth hormone in attempts to help me grow. it didn’t work bc I’d already started puberty. This won’t be an issue for you guys. The treatment is generally safe if closely monitored by an endocrinologist.
I do not remember much from that time tbh, but I did remember really hating getting the injections. they hurt, especially the abdominal ones! If you guys and the endocrinologist decide to go ahead with treatment, it will definitely be a good idea to find ways to make implementing the treatment manageable. What I with some success was to use the numbing creams the orthodontist gave for sore gums (was getting braces at the same time).
Can work if the dose is aggressive enough
and son of a BITCH… how’d they get it approved… dammit… dammitdammitDAMMIT
it’s NoT fAIR
TRIANGLE!
Connections in Chinese hospital and a money we didn’t really have