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Growth hormone question

(19 Posts)
littlequestion Sun 20-Apr-14 18:58:54

DS1 is 9 and tiny for his age - about the size of a 6 year old. He is off the scale on the growth chart. We had him checked out a few years ago and were told that he has a growth delay as well as "short genes" - I'm 4ft 11 and DH is 5ft 6.

He had a growth hormone check and were told he didn't have a hormone deficiency. They told us to keep an eye on his growth - he is supposed to grow 5cm a year.

We've been doing that and he is about 3 or 4 cm shorter than he should be from that so we are being re-referred.

My question is - will docs give growth hormone over here if children are simply extremely small but don't have any hormone deficiency? I have heard they do in America.

DS is already being teased about his height, and I have heard some unkind comments. I worry about it affecting his confidence and, in the future, his relationships and career.

DS2 is 7 and also the smallest in his class, but he is merely small rather than coming up to everyone else's elbow. DS1 and DS2 are now just about the same height - many of DS2's friends are much bigger than DS1.

Any advice from anyone with a very small ds (or dd?)

cestlavielife Sun 20-Apr-14 21:51:17

did they check for coeliac and other conditions involving short stature? have you yourself been tested for anything? as you are also small - it could be just genetic obviously.

child growth foundation are good and www.childgrowthfoundation.org/ can talk you thru other tests -there is an overnight one which can give diff results.

my dd did gh testing - all fine .it turned to be the coeliac. she was v small but now close to five foot at age 13

littlequestion Sun 20-Apr-14 22:33:02

Yes they did test him and there is nothing wrong thankfully. I've never been tested. I never expected the DSs to be giants but he is just SO tiny I'm getting worried.

cestlavielife Sun 20-Apr-14 22:35:13

what was his bone age?

eightytwenty Sun 20-Apr-14 22:43:58

LITTLEQUESTION - same here with ds2. I am 5ft. Problem is he has my v short legs and dh v short body. But weirdly enormous feet. Have wondered about growth hormones but drs are of the opinion that he is who he is. He is only 7, but I am keeping an eye on his growth. Interested to hear how you get on.

littlequestion Sun 20-Apr-14 22:54:11

Cestlavie, bone age was about 18 months behind

littlequestion Sun 20-Apr-14 22:56:27

Eighttwenty, how tall is he? Ds is 117cm aged 9 so was probably about 110 at seven

cestlavielife Sun 20-Apr-14 23:00:04

if bone age behind then chance he will catch up at some point. ask the endocrinologist about the relevance of bone age.

Woofsaidtheladybird Sun 20-Apr-14 23:12:38

Hello
Just to add - you won't be able to get an NHS prescription for GH if your dc is not growth hormone deficient. I guessing his IGF1 levels were also checked? If not, get them checked - that's a simple blood test.

To pay for GH in the UK will set you back about £15,000 per year. There are very strict guidelines in obtaining an NHS prescription. The UK doesn't have a license for treating children with idiopathic short stature like they do in the USA.

I'd continue to get a referral to an endocrinologist though x

titchy Sun 20-Apr-14 23:29:17

I have one of those! No GHdeficiency but bone age showed a delay, so we measure his centile based on his bone age rather than actual age. Have been told he's likely to continue to grow when most others have finished growing. At 13 he's fairly well through puberty, but not totally, and has reached the dizzy heights of 5' 1'' which is pretty much normal, though dh and I are short so not expecting him to be a giant. Another 4 or 5 inches should be achievable though.

littlequestion Mon 21-Apr-14 14:54:24

Woof, what are IGF1 levels? Titchy, that's interesting about puberty - we were told DS would have delayed puberty because of the bone growth delay.

LatinForTelly Mon 21-Apr-14 14:59:55

OP, what was his birth weight? If he had IUGR, I believe he can get ght on prescription despite having 'normal' growth hormone levels.

(There is a more serious growth condition which is a subset of IUGR with which affected children often show normal levels of growth hormone in their blood, but who respond very well to growth hormone treatment.)

I second trying the Child Growth Foundation. They are very helpful. Can recommend you on-the-ball endocrinologists to try and see etc.

Also, I'm not sure where you are in the country, but Dr Stanhope is a paediatric endo who is very good with growth conditions. He used to work at GOSH, now works privately from the Portland. A consulation is around £200, but he is very helpful and will often see patients once to kick-start the proper treatment locally.

LatinForTelly Mon 21-Apr-14 15:03:53

Also be careful about the bone age. The condition I mentioned before has delayed bone age as a feature in early childhood, then it can start to overtake chronological age, and these children often then have precocious puberty, which, if untreated, gives less time for them to grow.

(I'm not at all saying that this is likely for your DS - of course I couldn't possibly know! - just pointing out that delayed bone age definitely doesn't always mean they have longer to grow. In certain cases it is quite the opposite.)

littlequestion Mon 21-Apr-14 15:05:57

Latin, he was smallish at birth - 6lb 2- but three weeks early (for no discernible reason).

Thanks for the advice - I will speak to the child growth foundation. I am just outside London so no difficulty getting there.

titchy Mon 21-Apr-14 15:47:36

Yeah we were told puberty would be a bit late too!

Ds had genetic testing when he was little (sic!) which found nothing abnormal.

Latin I assume you're referring to Russell silver? We wondered that (ds has clinodactyl - but so do I, and was borderline iugr, but no other symptoms and is now growing reasonably well), so we discounted that.

LatinForTelly Tue 22-Apr-14 10:44:14

Hi titchy , yes I was. I know it's an extreme example but it is a good example of very small children having normal levels of growth hormone in their blood. It is one of the things that is a puzzle for the researching doctors. Also an example of the delayed bone age/eventual early puberty thing.

Re diagnosis, in my (very non-medical!) opinion, I reckon these things aren't binary, and in about 30 years, they'll have so much more of an understanding into the different endocrine and genetic factors affecting growth. I'm glad your DS is growing reasonably well now. smile It shouldn't be, but somehow it is tougher for a boy, the height thing, isn't it?

LatinForTelly Tue 22-Apr-14 10:49:46

Sory, little meant to reply to you too. That seems quite a reasonable weight for a 37 weeker? Definitely reckon you should contact the CGF. If you see a really experienced paediatric endo, then hopefully they will be able to do the very best for your DS.

LatinForTelly Tue 22-Apr-14 10:50:13

Gah, sorry, not sory. Will stop multiple posting now.

adoptmama Tue 22-Apr-14 17:07:27

try the child growth foundation facebook page. you will get a huge amount of information and support there on the different reasons you child could be eligible for GH treatment e.g IUGR, GH deficiency etc.

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