Growth hormone deficiency

[PollyEsterblouse]

Hello all: I hope someone here has experience of this sort of thing. My son isn't growing or gaining weight; we can't go private; I suppose I'd like to hear from others whose children were the same and how their children's health was affected in the long term.

My son is 9. Height is 28th centile; weight only 3rd centile. He has his dad's long & skinny body type, but his dad is 6'3" and was a tall child.

He began life as a gigantic baby on the 99th centile for both weight and height; he had slipped to 50th by the start of school, and has recently slipped again to where he is now.

He is impossible to fatten up. He has a good diet: unprocessed meat; eggs; carbs; vegetables; fruit, dairy, etc etc. Barely any junk food or sugar. For the last month I've given him daily protein milkshakes and omelettes; he put on a kilo over Easter, but when I weighed him today I found he'd lost it again.

Our medical insurance won't cover developmental issues. I went private for as much as we could afford: we got as far as a bone-age scan that showed his bone age is a year behind, but we can't afford four figures (!) for blood testing.

I hate bothering the NHS with anything that isn't life-or-death; I feel this is probably too trivial for them, and am assuming he will go untreated. I will try them, of course, but while I wait to see a GP, I'd love to hear from anyone with experience of something similar.

If you really do think there are issues use the NHS.
My son is growth hormone deficient, all diagnosed and treatment through the NHS.
To put in perspective when we started last year he was on the 0.4th centile, we started injections of growth hormone mid may last year and hes now on the 9th.
He needs the medication just like someone with diabetes would

Definitely go NHS - just because it’s not “A&E life or death” doesn’t mean it’s not potentially serious. You need to find out if there’s a treatable underlying cause. Sure, being short and skinny isn’t the end of the world, but being closer to average size could help smooth his path in the adult world.

Thank you Pixie: it's great to hear from someone who's been through this.

I've been reading all sorts all over the internet about this, and had the impression the NHS wouldn't treat it.

Does your son find the injections bearable, and do you know for how many years he'll be taking them?

Thank you Patrick: I agree it's not just about being tiny, and we've been worried about underlying reasons. I'll give them a try.

I'm 5'3". I have to ask kindly strangers to help me reach things in the supermarket, and can't reach the pedals in a lot of cars. I agree that the path through adulthood could be smoother

Polly: my advice comes from my experience as a 5’ and very nearly 1” woman
The NHS will treat GH deficiency if that’s what it is, but it may take some hassling to get to the point where you have the attention of a paediatric endocrinologist. You’ll probably need to see a general paediatrician first, and be referred on by them.

Have you calculated mid-parental height? here If your DS is 2 percentile lines below this then they should investigate according to NICE guidelines.

Growth hormone deficiency isn’t just about height, it’s an important hormone for other things and needs to be treated.

Any history of coeliac disease in the family? It would be worth getting a blood test to rule that out.

My DS has some gastrointestinal health issues and, whilst trying to find out more online I came across some articles linking small stature in children with coeliac disease (gluten intolerance). The disease is relatively rare in the general population but, amongst children with unexplained shortness of stature, rates of 3 - >8% have been found. Sometimes the children don't appear to have gut problems, just growth problems.

www.verywellhealth.com/growth-spurts-in-children-with-celiac-disease-563016

I only mention it as another avenue that might be worth exploring, even if hormonal issues seems the more likely reason - if there is indeed a problem.

Whoops, I see that BuffyFairy has already mentioned coeliac disease as I was composing my post!

Thank you Buffy: that's a great calculator. It tells me he should be at the 80th percentile in adulthood, so he's got some catching up to do.

Not sure about coeliac, although it's something I Googled a fair bit when trying to work out what was going on with my gut health last year. Thank you - and OutCrowd - there's a lot to look into.

Goshawk - you understand what it is to be one of the little people.

I hope we can get him growing again soon. The boys in his class seem about two years older than he is. Fingers crossed!

Thank you all: I didn't expect to have so many replies so soon.

My son is GH deficient because he had a pituitary tumour, which untreated would have been life or death. He is treated on the NHS - very very well. You should have this investigated. If he is GH deficient there is a window up to puberty to treat it...

I think you might be getting a bit ahead of yourself, op, worrying about how he will deal with the daily injections before you’ve even seen a GP.

I can add my dd’s experiences here, although I don’t know how useful it will be for you.

DD was a tiny baby - 4lb 4.5oz full term. She was well below the bottom line on the graph (sorry I can never remember which centile is which). But she grew fairly quickly, and moved up the centiles, although she was always small. GP and health visitors weren’t concerned.

Then when she was a toddler, she was diagnosed with cancer. Two and a half years of treatment, she stopped growing, lost weight and certainly didn’t put on the weight she should have by the time she was 5 or 6 years old. She had a gastrostomy to get more calories into her, but obviously at the time, treating the cancer was the priority.

After treatment finished, her growth was still very slow. She has a lot of gastro problems as a long term side effect of her treatment, which doesn’t help her with gaining weight. She has always been a good head and shoulders shorter than the rest of her class. When she was around 8 or 9, I think, she was referred for tests and started on growth hormone. MRI scans showed she has a small pituitary gland. And her bone age was also behind. At the same time, she was referred for genetic testing. Russell Silver syndrome was one thing they looked for. Turned out she has a different gene deletion (and I can never remember what it is called, sorry) which is the likely cause of the underdeveloped pituitary.

She wasn’t keen on the injections to begin with, but she got used to them very quickly. She chose the device with no needle, it uses compressed air instead. Not sure it was the best choice, she is now nearly 14 and still can’t administer it herself (she can get it ready but needs someone else to press the button for her as it’s too stiff and bulky). One of the needle devices would have been better. She’s not had any side effects from the GH.

So she is now just above the bottom line on the growth chart for height, but still some way below it for weight. She has to take Levothyroxine, and they keep a eye out for any indication the her cortisol levels are low. They are also keep an eye on how puberty is progressing (slowly!) in case they need to step in.

There are a lot of different reasons why growth may be slow. You need to get the GP to start looking into it. Don’t assume you need to do it all privately. We have private health insurance but haven’t needed to use it once for DD, the NHS has been amazing.

There’s a great Facebook group for the Child Growth Foundation. You’ll find lots of helpful advice there. At his age I wouldn’t get fobbed off with a wait and see approach. Do use the NHS, it’s not trivial if there is an underlying cause.

My DS has been under endo and gastro since he was 2, referred after he tracked 50th in his 1st year and then dropped to 2nd. Mid parental around 50th and sister on 75th. They did blood tests for IGF-1 deficiency, growth hormone (doesn’t tell much on a one test) and for thyroid and coeliac test, then a biopsy even though coeliac test was negative (family history including me) and bone x-ray. I was offered a stim test for him but I chose to wait and see. It’s looking more likely that his poor growth was due to food intolerances now identified as he’s slowly tracking back upwards over the last year. Endo review is in May so a decision will be made then.

Good luck!

Oh gosh MrsMaisel, that must have been a terrifying diagnosis for you. I'm so sorry to hear it, and glad to hear your son's getting the treatment he needs; I hope he's healthy and happy.

I am definitely going to talk to the NHS GP, but know we'll be in for a long wait; I just wanted to talk to others in the meantime. Thanks and good health to you all.

What are your families growth patterns like, op? I ask because growth charts represent the average but not everyone grows in the same way or follows the chart. I was a big baby but a very small child and sloooooow developer (physically, that is). My weight and height were monitored on a 6 monthly basis to assess whether I needed hormone treatment (thankfully not, as they were still using hormones from cadavers at that point ). However, once I hit puberty I shot up and met all of my developmental targets. I was still skinny but that’s my natural build when I’m not Mainlining chocolates. If I’d followed my growth chart I’d have been under 5 ft as an adult, but I’m actually above average height.

Turns out this is a familiar pattern in one of my parents families, it’s just how we grow! So don’t panic, don’t feed him protein shakes (are these safe at age 9?), if you’re worried then take him to the Gp who will probably just want to do some monitoring and maybe blood tests.

Thanks Polly, he's doing very well 5 years out from the end of his treatment (though GH and other meds continue). You just never know what the cause is unless you investigate...

IreneWinters, interesting to read your post, I hope your daughter is taking this in her stride. My son is also on levothyroxine, and hydrocortisone for cortisol deficiency too - I have my fingers crossed about puberty, I would really like to avoid having to induce it. Endocrine problems are complicated.

Irene, I must have cross-posted with you as I didn't see your reply before posting mine: thank you, and I'm so very sorry to read of what you and your daughter have been through. A cancer diagnosis in the toddler years must be absolutely devastating. Thank you for taking the time to write about your experiences; I hope you and your daughter are living happy and healthy lives now.

I am getting ahead of myself - you're right - I tend to lie awake until the small hours, overthinking life and constructing "what if" flowcharts in my head. I'll ring the GP bright and early in the morning.

Thank you again.

Pigeon, that's a good question. I think both my partner and I grew fairly consistently.

We have a daughter, too, who is 12, and an inch taller than me already, around the 85th centile. She also grew consistently and since age 10, has often been mistaken for a teenager; she now looks about 16.

(I promise I'm not feeding my son any sort of Beefcake 1000 bodybuilder protein shakes, by the way: I saw a plant-based protein shake mix for children and I thought I'd try it. It doesn't seem to have helped, but at least he said it tasted nice )

And Buffy, thank you for the link, and for the list of things the blood test was for.

We got as far as one private paediatrician appointment and although he said the next step was the £££ blood test, I didn't really catch all the things they would test for, as he listed them too quickly for my ears to keep up with.

It's fantastic that your son's tracking upwards now. All the very best for the review in May, and for your son's future health - thank you again

Hi OP, I have only quickly glanced through the thread, but I think you are getting a little ahead of yourself.

There are many reasons he could have slowed down growth. My dd has been tested for all sorts of things! Genetic tests and medical.

You say he is 25th centile. For perspective, my dd has been way below the 0.4th centile (height and weight) since a few weeks old. She has been under investigation for pretty much 6 years before GH injections were started earlier this year.

It won't be something you can fund yourself. I get the impression it is v expensive and it was mentioned many times difficulty in funding etc.

I think you need to see a GP and express your concerns regarding his slow down in growth and ask to be referred and/or get tested for simpler things like celiac first.

Good luck

My DS2 has GH injections. His measurements didn’t even make it on the chart at 20week ante natal scan, it was a worrying pregnancy! Like other posters, he was born on 0.4th centile and there was very little catch up growth after that. He started GH injections in reception year and has caught up a lot since then, now at 9yo getting towards 25th centile for height (DH and I are about average). He’s still v skinny, much lower on centiles than for height but that’s not a concern. He copes very well with injections. I’d push GP, stay in the NHS system, stepping out then back in gets very messy with waiting lists etc. Also, IF GH therapy is necessary, unless you are seriously wealthy it is likely out of reach, especially when you add in medical appointments. It would be tens of thousands per year until patient stops growing (and sometimes longer).

Yeah, the protein shakes did make me think of my DB who tried them as he desperately wanted to bulk up as a skinny teen. Didn’t work, even combined with weights! He’s still skinny as a rake in middle age but now his friends are jealous of him rather than the other way round .

**They did blood tests for IGF-1 deficiency, growth hormone (doesn’t tell much on a one test)

Are IGF-1 and growth hormone different things on a blood test? Recently been seen by paediatrician and have ordered blood test to test igf1 plus thyroid etc