Son small for his age and struggling

[LoopyLucyLou10]

Hello, just posting here for traffic.

I'm just after some advice about my son as I'm running out of ideas.

My sonis 6 and was born small (5lb 3oz at full term) due to the umbilical cord being too thin which went undetected during pregnancy however his growth was monitored. He has always been below the bottom centile for his height and between the ages of 2 and 3 he underwent many tests to rule out anything that could be causing his growth problems. The outcome was that he is very healthy, produces an above average amount of testosterone and growth hormone and there is nothing to indicate why he isn't growing as he should be.

He is not expected to reach 5ft and will probbaly be somewhere between 4ft and 5ft by the time he is 18. The advice I have been given by various doctors has been that nothing can be done and he will just have to learn to cope as he gets older. Which he has done brilliantly and despite his size he has reached all milestones either early or on time and is an intelligent boy. The problem we are facing at the moment is that although he is 6 he is essentially stuck in the body of a 3 year old and therefore he gets very tired. He is struggling to keep up at school because by the afternoon he is exhausted which is effecting his performance at school however because he has no additional learning needs he is not entitled to any extra help such as extra time with a teaching assistant etc.

I am currently thinking about taking him out of school and educating him at home, with one to one time we would cover a full school day by lunchtime and we would be able to miss out the period in which he begins to struggle. He is also facing difficulties fitting in with the other children due to his size, he is in year 2 and the youngest in his class (August baby) and it's severely effecting his self esteem.

I hate to see him struggling and being so unhappy. Does anyone have any advice for me either from experience or outside perspective?

Thank you in advice.

Yes the school said my DD was coping there wasn't issues other than tiredness.
That was until she changed Teachers after 2 years. She has ADD DCD dyslexia HFA traits.
If you have had all the growth test, really try an occupational therapist I was truly shocked at how much DD struggled daily.
It nearly broke her in p4 she had an emotional breakdown that is still affecting her years later.

Hi. I have two daughters who are in the same position. I know endocrine too

What’s his igf-1? Has he had a stim test?

I think you are being fobbbed off. I take growth hormone as an adult. It will effect your growth till your growth plates heal. Which in men is about 21. Are you near London? There’s the best endocrine dr ever there. He saved my life and is well known for helping children with adrenal problems. But also with growth

Check out the magic foundation.

They can help deal with rare growth disorders. Given your sons predicted height. Have they looked into Russell silver etc?

My children are both classed as SGA which interprets to small for gestational age. However. I’m small and my husband although not short. Is thin. I’m a size 6. Hrs a size 30. We both had growth issues growing up. They nearly had me taken off my mother as they thought she wasn’t feeding me! She was. I just didn’t grow. When I was 12. I went through a massive growth spurt. I grew an inch each month. I grew so fast I got horrific stretch marks on my thighs. I believe my girls will go through the same.

A friends ds sounds very similar to your son. He was diagnosed as failure to thrive from a young age. I remember his starting secondary school photos, he barely went past the door handle.........his mum fought for years for him to have growth hormone therapy and the result is amazing. He's not massively tall but no longer stick out in a crowd. I'd say he was around 5ft 7 now aged 16 and can obviously grow more. For your sons sake I think you have to really push and maybe go elsewhere to find out what help is out there.

My DS is very small (below 0.4th percentile) but he comes from a short family. However, he has never been excessively tired after school, and indeed from the age of 4 had enough energy to do martial arts, swimming lessons, and dance classes every week. He’s 10 now And a head and shoulders below most of his classmates but still does 18 hours of activities outside school every week. Like others have said, I would go back to your GP. If he’s producing more than enough growth hormone it suggests that something else may need addressing.

OP, I don't think it's true that GH therapy shouldn't be tried even if child produces GH.

My dd is also 6. Has gone through every test possible. At one point they though Russel Silver syndrome, but that's been discounted. Also CF as she kept failing the sweat test. But again passed it when she got big enough.

My dd was always below the 0.4th centile for height and weight. She started GH therapy in January and has grown massively this year. She is still be far the smallest in her class, but it's v noticable how much she has grown. Shoes have lasted six weeks , she has gone from age 3 clothes to 5-6.

She's always been under a clinic of some kind so I've never had to fight for referral. GH treatment is v expensive and I know the Dr had to jump through a lot of hoops to get is through funding etc. I would certainly push for a referral to endocrinology.

Ditto LellyMcKelly almost word for word! My son is 6 now, and the smallest in his class by far, but he doesn't struggle with tiredness. However, my sister's son has been struggling with fatigue and pain for a long time, and was fobbed up by GPs over and over again. They all said that his results were "borderline normal". He is finally seeing a consultant, who is very concerned and says that boys his age shouldn't be borderline normal, they should be well into the normal range. My point is that sometimes, unfortunately, you need to keep pushing. GPs can accept almost in the normal range as good enough, when that might not be the case. I hope the appointment goes well today.

I have revisited the GP several times and always to be told the same, there is no other testing that can be done or is warranted in his case because he doesn't present with any other symptoms alongside his delayed growth.

But he does have other symptoms - extreme tiredness and struggling academically

The consultant said to me very plainly that he is stuck in the body of someone half his age and physically that will cause him to be tired and he will just need to learn how to cope with it.

Unfortunately not all consultants are interested in investigating further once they’ve decided what they think the answer is I think you need a different consultant who is willing to be more thorough.

Good luck with the GP

Hey @LoopyLucyLou10. Firstly chill! I've worked a lot in Year 2 and most of them are an emotional wreck by 3 pm. I've also got my own 'always shortest in year by far' August boy. While he's had struggles with social stuff he's always had good friends but this is/was a mixture of his ASD AND his economic proportions .Oh and he also had some weird auto immune brain thing after a virus which meant he stopped walking at 2 and took a long time to get back to running, he has joked that he's like the poster small nerd in an American kids cartoon.)

At 13 he's a happy chap who is increasingly finding his place and voice, and it's amazing for me and my husband to watch him blossom, especially this last year, I can imagine him being a man, and actually a very funny, and sweet one. Biased much?

A friend has a daughter who was similarly small. Some of the tiredness seemed to be the fact that her stomach was so small she needed more regular meals to keep her going as she physically couldn't eat enough at a single sitting. A small portion of pasta at 1.30-2pm ( school lunch was at 12) really seemed to help for several years.

Firstly chill! I've worked a lot in Year 2 and most of them are an emotional wreck by 3 pm
What about the DC who are physically and mentally exhausted by 12. The extra 3 hours struggling falling behind really has an impact when they can't keep up from tiredness.
I don't think it is normal OP.

He is struggling to keep up at school because by the afternoon he is exhausted which is effecting his performance at school

No honestly at the school I worked we were all knackered by the afternoon because the morning is full on maths and English. You say he is doing well academically and reaching milestones early even, so it's just tiredness (that isn't unusual). What's he like in the evening?

Someone has to be at that point on the chart. Are you generally an anxious paren't op? and I in no way mean that patronisingly.

struggling falling behind

the afternoons are drawing and music etc so deliberately not the subjects that need the concentration of maths and literacy because the children are most likely to struggle in the afternoons because they are tired.

although I should ask op how you know he is struggling with his performance in the afternoon?

The consultant said to me very plainly that he is stuck in the body of someone half his age and physically that will cause him to be tired and he will just need to learn how to cope with it.

Honestly, I can’t believe you’ve been fobbed off like that. This isn’t normal. There must be some explanation, not “he’s just half the size he should be” 🤷‍♀️

You haven’t mentioned whether he’s had any genetic tests. What about dwarfism, even? There are hundreds of different types of dwarfism.

The tiredness seems odd. I have a tiny DD, she’s always tracked below the 0.4 centile and at nearly 16 is only 4ft 8. She gets tired due to her heart and lung issues rather than her size.

So as I stated before. I take growth hormone as an adult. Whilst I won’t grow in height. As my growth plates are closed. It helps keep my heart healthy. It stops me being fatigued.

As someone said. It’s massively expensive. I had to jump through hoops to get it. I now advocate for adults in the U.K. with growth hormone deficiency. Growth hormone does a lot. But we don’t replace it as much here because it is so expensive and isn’t life sustaining.

They thought my youngest had Russell silver. But the endo was awful.

So yes. Growth hormone deficiency would cause incredible tiredness. Can’t build muscle. Keeps heart healthy. It does an awful lot

Also if one hormone doesn’t work correctly. The others compensate. Usually the thyroid. Or acth. Or cortisol.

There must be some explanation, not “he’s just half the size he should be

No, the dr said half his age, if he was half the size he would infact be smaller than the average 2 month old baby boy (the average 6 yr old boy being 115cm and the average 2 month old boy being slightly more than half that.) A boy on the second centile at aged 6 is the same height as a boy on the 9nd gentile at 3.

*centile ffs

Can you get another opinion on whether growth hormones could add even a few inches to his final height?

Jesus, the lad doesn't have a growth hormone deficiency. Yes I'm biased but the only problem I can see with not being taller is he's less likely to be dated by women who see height as non negotiable, and I'd be happy that adults like that weren't interested in him.

Sorry, earlier I meant to say... 'A boy on the second centile at aged 6 is the same height as a boy on the 91st centile at aged 3.'

Yes of course @headinhands I take your point. I worded that clumsily.

But my point still stands. I can’t believe this child is the size of a 3yo at 6yo and the consultant just thinks “Meh, it is what it is”.

I can’t believe this child is the size of a 3yo at 6yo and the consultant just thinks “Meh, it is what it is”

But I've explained how there is a massive overlap in heights of a room of 3 year olds and a room of 6 year olds. Your tallest 3 year old being the same height as your shortest 6 and a half year old. I doubt parents of tall children get the same advice even after they've been reassured through many tests: 'ooh you need to look into getting his height stunted.'

The OP has said he’s not expected to reach 5ft by 18 @headinhands

Do you think think that’s within normal range?

I don’t understand how he can be producing above average growth hormone yet not be growing. That doesn’t add up.

Your GP sounds dismissive and useless.