Delayed puberty in 14yo DS

[OneLittleHopper]

DS will be 15 in a couple of months - he has basically stopped growing over the last year and still no signs of puberty. Bloods came back showing low iron and v low testosterone but otherwise he is healthy. Coeliac test was negative. He has been on iron supplements so hoping that will help a bit.

We saw a paediatric consultant this week who said we can either keep on waiting for puberty to start naturally, or that ds can have a 3 month course of testosterone injections to kickstart things. He will be reassessed in a few months. Sounds like we basically have around a year before the puberty ‘window’ closes.

DS is obviously anxious and upset about everything and has point blank refused to consider the injections. I think this is primarily because he doesn’t want to have an injection. Obviously it’s his decision and I don’t want to pressure him but I’m not sure we should wait much longer. I’m worried we are just running out of time and that he will regret it when he goes into year 10 and he’s obviously much smaller than all his friends. Has anyone been in a similar situation and what did you decide to do?

No real advice OP, but just for reassurance there does seem to be quite a broad range among boys at this age. My DS is 15, 6ft 3 and has obviously gone through puberty but a few of his mates are still very small and haven’t yet.

This was also the case among my eldest son’s group of friends. They are 18 now, and the ones who did go through puberty later did all eventually catch up!

Personally I’m not sure I would start with hormones just yet, particularly if DS is reticent. A good childhood friend of mine was tiny as a child - doctors put this down to her prematurity at birth and recommended growth hormones. Her mum refused and my friend is now just slightly shorter than average and those hormones are linked to certain cancers…

Is he against the injections because they're injections rather than the testosterone itself? Could you ask the Dr whether testosterone gel is possible instead? It would require daily application vs injection every few weeks and is more expensive but I believe it is an option for patients with needle anxiety.

Ds was shorter than me at 15, voice hadn’t broken, clear skin, no facial hair. We never even considered there was possibly anything “wrong” or delayed at that time as many of his friends outwardly seemed very similar. Some of the boys on his football team had beards, but they seemed to be the unusual ones.

Now 22 he is 6ft 3.5in, has grown 1/2in this year and not sure if he has stopped yet.

He started sprouting first year of uni, age 18, so much he had horrendous bright red stretch marks across his back. Severe hormone driven acne, when he had never been bothered with many spots before, exploded on his face, neck and shoulders in what felt like just a few weeks and we went privately for roaccutane. It has only been in the last few months he needs to shave darker thicker hair weekly rather than removing fine hair less than monthly and he has started getting chest hair that he hates. He suffered from bad TMJ, sometimes common during changes to jaw during puberty, for a couple of years age 18-19, some mornings not even able to open his mouth (coincided with his nhs dentist going fully private and dropping all nhs patients over age 18, and we couldn’t find another nhs dentist 🤦🏻‍♀️)

There is a chance your ds is just a later developer too, there is still a chance it could happen naturally (and at speed like my ds), but it must be such a difficult decision for him and worry for you if you feel time is limited if it doesn’t.

Thanks all - it’s so helpful to know there is such a wide range of experiences.

I am pretty sure the injection aspect is the main reason he is so against it but he has also said he doesn’t like the idea of putting something artificial into his body. I will enquire about the gel though - thankyou for suggesting it. He’s been ok with needles before and suspect knowing him that anything that requires daily use will get even more pushback

I had the exact same situation with my DS. I could have written your post some years ago. He had the injections, they were one a month for 3 months (not daily) and if I could go back in time I’d have pressed for them even earlier instead of waiting. Everyone told us ‘oh he’ll be six foot, you just have to wait’ but his prom photos look as if a year 7 child in a suit wandered in accidentally while the pictures were being taken. He’s still unusually small and that window has closed now.

Puberty is not just about secondary sexual characteristics, it’s about brain development too. He was much less mature than his peers in a lot of ways. Your son is making choices from a child’s point of view with no real understanding of the long term, only the immediate ‘I don’t like this situation’ and a short term outlook on it all. He could easily tell you in the future that you should have persuaded him to have the treatment.

@Startstarry is talking about growth hormones when she mentions her friend and these are not the same things at all, so the consideration about ‘certain cancers’ is not there.

@HappyNewTaxYear - sorry, I wasn’t meaning to scaremonger or offer inaccurate medical information at all here. They are totally different things yes, just mentioning my friend’s historic experience - and think there are always factors to consider when introducing hormones into a developing body etc.

Thankyou @HappyNewTaxYearthat is so helpful and sorry you went through this too. Did you need to persuade your DS to have them or was he ok with it?

No problem and yes I agree - we listened carefully to the endocrinologist about safety etc.

He was ok to have the treatment and wanted the outcome (if that makes sense) but needed a fair bit of support over the actual injections and blood tests. I wouldn’t say he was scared of needles themselves, more just very uncomfortable with hospitals, and he’s the kind of person who doesn’t like talking about health issues (his or anyone else’s!) So I tended to treat him to lunch afterwards, not rush him back to school too quickly that day etc. He had no ill-effects from the injections themselves and they did start his puberty going. He’s very glad he had the treatment now.

Was the paediatric consultant an endocrinologist or a paediatrician? You need to see an endocrinologist.

He was a paediatrician specialising in child growth. I did ask about the risks etc but he suggested the injections are very safe. Can I ask what difference it would make seeing an endocrinologist? DS did have his hormone levels tested with a blood test at the doctor and all normal apart from the testosterone.

And thank you @HappyNewTaxYearfor sharing your experience - going to give DS a bit more time to process it all and then have a proper talk about it and see if he’s more receptive to the idea.

Oh im sorry for you and your poor DS, I hope this is resolved ASAP!

The only specialist here is an endocrinologist, and even then - one who specialises in pubertal disorders and fertility. They would be best placed to look into the reasons why puberty may be delayed and have be able to give you better advice as to how and when to start treatment if necessary.
My son is having puberty induced by HCG rather than testosterone - this is where the body is given the signal to produce it's own testosterone. Be aware that testosterone alone does not reach the testes. This means the testes will not grow and will not produce sperm if testosterone is the treatment given. Don't get me wrong - it is a good treatment and it may be the only one you are offered even by an endocrinologist, but in other parts of the world HCG is considered the gold standard.
Getting to the bottom of why puberty is delayed is also v important & frankly I would say an endocrinologist is better placed to find answers. My son doesn't produce growth hormone or pubertal hormones because he had a pituitary tumour. That's v rare, but the only way to diagnose it is via MRI.
I would be on the front foot & get a second opinion.

My son didn’t start puberty until over 15, nearly 16, and is a perfectly healthy young man now. The range can be pretty wide for boys and puberty.

Just coming to say I agree with @BlackSwan my son also had delayed puberty and saw an endocrinologist at 14. They should be able to tell from his testical size (they have a sizing necklace type thing) which can help tell if puberty has been initiated by the body (and of course blood tests etc to confirm if needed) in my sons case it was a big calorie deficit as he was not a great eater and was involved in a sport which involved a hours of training. He was told from his testical size that his body had sent the message to initiate puberty but his body had no extra calories for growth. That was all he needed but it was a real concerted effort and he was told you either increase your calories or you’ll not reach your full height potential. He’s now 23 and a very solid 5’8! That was just our experience and your DS may need different treatment but please see the right person!

Thanks @BlackSwan and @FVFrog I will look into finding an endocrinologist for another opinion. The consultant did check testicle
size and confirmed not in puberty yet but all the other checks and blood tests have ruled out it being caused by any underlying conditions. The consultant basically said some kids are just built like this.

Your point about diet is interesting @FVFrog DS is a v fussy eater and rarely eats more than a few bites of a meal . He basically lives on snacks. It is a nightmare. He’s a healthy weight but I have wondered if this is a contributing factor esp after his iron came back so low at the initial blood tests. He has seemed so much healthier and more energetic since he had a course of iron supplements. We are really working on improving his diet now and trying to get more calories into him but it’s an uphill struggle at times. It’s not so much that he eats unhealthily but more that he just eats so little of it - ie he’ll happily just have a couple of ricecakes and some hummus for lunch and then say he’s full.

@OneLittleHopper it’s definitely worth asking the question! Definitely impacts girls starting their periods, not sure if there’s a link for males though. Good luck

@OneLittleHopper how are things going with your DS?

I am in a similar situation with my DS. He is 15years and 5 months, and is noticeably smaller than his peers. He wears age 10-11 clothes and just looks like a small boy compared to his friends. No noticeable signs of any puberty (spots, hair, voice etc). I want to take him to the Dr to get some investigations, I'm worried that if we leave it we may miss the window. However DH thinks I'm making a fuss, and it will happen naturally. DS admits that he is beginning to worry about it.
To complicate things, he is coeliac, however it is under control. However due to multiple blood tests when he was younger to diagnose the coeliac, he is now extremely needle phobic so further blood tests would be a massive struggle.
I just can't decided whether to start down the road or not.......

@Chesticleslook up growth hormone deficiency. You need a paediatric endocrinologist

Hi @Chesticlessorry you’re going through this too. DS decided he wanted to go ahead with the testosterone injections in the end - he’s now had two. No obvious changes so far though he does seem a bit smellier! He’s happy he has decided to do it though. I think it has made him feel a bit more ‘in control’.

Esp if your ds is worried I think I would go to the doctor - if anything I wish we’d gone sooner, not least as it still took quite a few months from the initial doctor visit for the referral to come through.

Just wanted to post in solidarity. My ds was always much smaller than his peers and seemed to stop growing entirely for about 18 months from the end of year 6.

We went to the gp who referred him to hospital. Like the OP he was negative for celiac and thyroid problems but had very low ferritin despite a good diet. They did a hand xray and blood test and said he had delayed puberty and was about 18 months behind.

We worked hard on his diet, extra calories and iron rich food as well as iron tablets. He also started to take zinc as he’d read that can help with low testosterone.

He is now 15 and growing, he’s just overtaken me which I never thought would happen considering how small he was but it does happen! So currently 5ft 8 and looks taller every day.

When I was worried about him I did searches on here and would see stories about small kids who had shot up and never believed my son would be one of them as he was so small. He’s still got lots of growing to do but even if he stopped now feel it wouldn’t be too hard for him.

Thanks everyone. I phoned the GP yesterday and actually managed to get an appt for this morning (I know this makes me sound like a troll, nothing ever normally moves this fast!).
The GP was lovely, and we have a referral to pediatrics where they will have a more thorough examination of him. He is currently 15years 5 months, 152 cm (4'11") and 35kg. So underweight for his BMI.

Hopefully the referral will come through quickly. Thanks for all your posts and comments. Nice to have somewhere to chat about it.

That’s great you got an a referral @Chesticles hopefully it won’t be a long wait.

How tall are you and his dad?

@Chesticlescan you please join the growth hormone deficiency page on Facebook an learn all you can about it? Your son seems to have all the symptoms