Growth hormones- anyone with any experience

[missmapp]

DS2 has noonans syndrome( which predisposes you to shorter height) and has followed the 2nd percentile since shortly after birth. At a recent check up for his heart condition I was asked which growth hormones he was on, and when I said he wasnt on any I was greeted with surprise.

We are not a tall family, and we hadn't considered them before, but we now have an appt with the growth clinic at the local hosp to discuss any next steps. DH and I are still unsure. If he continues to follow the 2nd percentile, he will be about 5ft 4 as an adult, is this problematic? Are growth hormones safe? We will of course ask the consultant all this, but if any wise people her have any experience, we would be very grateful.

Thank you

He is 3 by the way

bump

my son is 6 and has been monitored for height by consultant paed since referral at his 2 year check by HV. He has constantly followed a line well below the 0.04% since first measured age 1, no variation from the line but has never crossed over.

At our request he recently had a wrist xray for bone age which showed it was a couple of years behind so we were told he would grow for another couple of years beyond average making his predicted height better.
Growth hormone has never been discussed with us and he just continues to been monitored every 6 months at hospital appointments.

My brother had growth hormone treatment to bring puberty on as a teenager as he was getting huge anger issues at being years behind ie less than 5 foot at age 16 but this was his choice as much older.

Hello there

The prescribing of growth hormone is very strict, as it is very expensive, and there are only a few clinical indications that the NICE guidelines will 'allow' the prescribing of growth hormone. Sadly, Noonans isn't one of the indications, although I personally think it should be. Get a referral to a paediatric endocrinologist, if there isn't one at the growth clinic at your local hosp.

Growth hormone these days is very safe, has been since 1985.

Pleases do pm me if you want more info - I've been working in this field since 2000.

Thank you both, that is useful ifnormation.

Suntan- i am interested in the bone scan and will ask about that at our appt.

woofsaid- thank you, I will see what the hosp says and then maybe contact you further if that is ok. It is an endocrinologist we are seeing, so that sounds like it is a good thing?

Thanks for your responses

My dd has been on growth hormones since Christmas. Took nearly 2 years of tests always showing low levels of IGF-1, full skeletal survey and other x-rays to get diagnosis. Our understanding was because PCTs want this much evidence before agreeing to fund treatment...is very expensive and has to be continuous until adulthood.
We (her parents) were measured to assess her predetermined biological height...and she should have been between 50th and 75th centile, but was stubbornly staying below 0.4.
Six months on and she is zooming up the height charts...so definitely works!

Thanks catesmum, sounds like your dd is doing well!

Catesmum, is your dd on growth hormone or IGF-1? I'm really interested because my DS's growth hormone levels are fine, but he may receive IGF-1 at some point because the levels of that are so low, and he's 4+ centiles below his expected height.
He's under a paed endocrinologist, but I guess I'd like to hear about the reality of treatment from a family rather than medical perspective.
Woof, can you recommend any good resources about IGF-1, both for us and for explaining it to other people? Particularly anything about effects beyond height, and the nutrition sensitive aspect of it (he has some malabsorption issues too). We struggle communicating it to other health professionals, partly because its uncommon, but also because he's not that short, and is always taken for taller, but is much much shorter than expected.

Missmap, on a much lighter note, and taking a long term perspective, I've gone out with a 5ft 4 bloke before. It wasn't a big deal.

She takes growth hormones, and as a result her IGF-1 levels are now within the normal range.
The whole process hasn't been pleasant for her. It's not just lots of blood tests (which in itself are difficult for a young child), but there's a profiling test, which is blood tests every 20 minutes for 12 hours over night; glucagon stress test; long MRI of her brain; skeletal surveys...the list is long. And now she has to inject herself every night for the next 12 years. We only decided to go ahead with the treatment (on her paed's recommendation) because her predicted adult height was a max of 4'6" and there were going to be adverse health issues related to that.
I think it's a process you really need to think about carefully before going through with.
Hope that helps!