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Growth Hormone deficient teenager

(11 Posts)
Td109 Sat 10-Jun-17 12:18:12

Hi please bare with me, this is my first post 😁 Sorry it's a bit long I'm a very emotional mum right now 😒

I'm so worried about my 15 (nearly 16) year old son. From a young age he's always been 'small' always acted 'young' but any concerns I had were quickly thwarted by the fact everybody would say (including health visitors & doctors) "oh he's just a late bloomer" & "it would be boring if we were all the same shape & size". And to be perfectly honest they were right, I thought the same he's just small, sensitive & a little different and there's no harm in that at all. He had a great network of friends, was outgoing, showed maturity in situations so everything was good! This carried on until he got to about 13/14 and then I started to notice he wasn't interested in going out with the usual gang or anyone for that matter, he started not being invited to things, he became completely withdrawn from his peers. This carried on and on and he has became basically a depressed recluse who doesn't want to go out ANYWHERE, stays in his room ALL the time, doesn't communicate with ANYONE. Now I just put it down to him being a grumpy teenager and shamefully thought to myself wouldn't it be nice if he were more like so and so and why can't he just go out to these parties like everyone else! Truth is and has been staring me in the face for a long time. I took a step back and looked at the situation from an outsiders point of view....he's only 4ft 11 so everybody towers over him, he's got puppy fat whereas they are all manly with muscles and body hair, he looks like he's 12 at best especially in the face. I managed to talk to him frankly about how he's feeling and he just broke down and told me how he'd lost all his confidence, felt worthless and hated school as he felt so inferior! He couldn't possibly go out socialising as he looks 5 years younger than everyone and the things they all want to do he has no interest in. He then told me that he hadn't gone through puberty yet and was a freak πŸ˜” I got him straight down the doctors and they ran bloods that day, the next day we got called back to the doctors for an urgent blood results appt.
So he's 16 the first week of August and his testosterone level is severely low at 0.8 (normal is between 10-27 I believe) he also had other hormone irregularities, he's been referred to an endocrinologist at our local hospital (been waiting 9 days to hear back so far) which is great but I can't help feeling I've let him down as I should have known, I should have done something! I've looked up GHD and he ticks EVERY single box, I've been warned by the docs it's going to be a bit of a long journey with a lot of hospital appts ahead but I just wandered if anybody else has any first hand experience of GHD, and whether the outcomes are good, will he reach his full 'potential' or have we left things too late?
I'm one very worried mum right now and wish the consultant appt would hurry up.
Thanks in advance x

Itsallgone Sat 10-Jun-17 17:03:28

I've been through this with my DD due to a mistake while she was monitored for growth. It was too late for anything for her but it sounds as though your DS still has time. Please push for a quick appointment to get tests done. A STIM test is needed to confirm GHD. Please take a look at website child growth foundation. There's a parent facebook forum that offers great experience and advice!

Itsallgone Sat 10-Jun-17 17:05:44

And an x-ray of his wist is a priority to find out his bone age and therefore how much growing time he has left.

Td109 Sat 10-Jun-17 17:49:51

Sorry to hear your daughter has had growth issues too, it's such a worry isn't it! Thank you for the advice, I think I will call on Monday and see if I can hurry things along. The doctor said she would ideally like him seen within 2 weeks but I can't see that happening now. I know we've picked it up late but now I know something's wrong I just want to get started on correcting it.
So a bone X-ray to show bone age and a STIM test πŸ‘πŸΌ Thank you, at least I shall go in armed when we do get his first appointment through 😁

flutterby77 Sat 10-Jun-17 23:38:23

If he has not stopped growing yet he may be able to start growth hormone treatment which may give him some valuable extra inches. Was he small at birth?

I agree with its all gone about her advice also. can you afford to pay privately to see endocrinologist to speed things up? The sooner he sees someone the better. I'd say the cgf would have recommendations of good endos in the uk.

Itsallgone Sun 11-Jun-17 09:06:45

Agree private would be the way to speed this up though you'd likely want to use NHS for expensive tests. You might also be better going to a big hospital rather than local depending on level of expertise in child growth as care can be variable outside of major centres.
www.childgrowthfoundation.org/ can advise on the best hospitals.

Td109 Sun 11-Jun-17 15:31:28

No, he wasn't small at birth he was 8.15 😊 But I had noticed by his 3rd Birthday he was notably smaller than others at playschool and toddler groups etc. Where he's an August birthday he was nearly a year younger than some of the others in his year at school so we used that as another way of excusing his height. Unfortunately we're not in a position to afford to go private at this time, we seem to be working just to pay the bills these days πŸ™

Td109 Sun 11-Jun-17 15:38:34

Luckily for us our local hospital is one of the best in the south, I shall look up the endocrinologists credentials though that's a good idea.
I've just looked at the website you've recommended and wow what a great informative site, I shall get registered with them asap! Thank you πŸ‘πŸΌ

BlackSwan Sun 11-Jun-17 17:04:08

Dreadful that you're going through this. Both your son and you. Confirming that he is GH deficient is one part of the puzzle. The other part is finding out why. There can be many different reasons - but don't rest until you're satisfied that you've gotten to the bottom of it. I hope all turns out well.

Iwanthertoloveit34 Mon 19-Jun-17 21:29:18

My 4 yr old is undergoing investigations for GHD, I hope you and your son are starting to get the answers and treatment you need. We we're very lucky to have a health visitor who took our concerns about his growth seriously and referred us to our G.P who then referred us on to paediatric endocrinologist .Even though we had some concerns it is so easy to be reassured by just about everyone saying 'he'll have growth spurt,my son was small now he is taller than me' etc,etc everyone thinks they are expert in growth. I hope when my son is older we can have the relationship you and your son have the fact that he felt able to come to you with these difficult emotions is wonderful. Your post really helped me as I had not thought about the impact of GHD on puberty and I feel that treatment for my son if indicated will be the right thing to do Thank you for your post and I hope things go well.

fempsych Tue 20-Jun-17 20:56:09

You could probably find the phone number for the secretary to the endo team online. I'd phone and chase the referral!

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