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.

Oh OP it sounds really hard for you and your DS. What has the SENDCO advised at the school? Even though he doesn't have specific learning needs, his physical needs are impacting on his ability to cope with the standard school day, plus the emotional impact of being obviously different from him peers.
I would hope that the school has had discussions with you regarding his difficulties and what dan be done to manage this?

If home schooling your son is going to work better for him them go for it.

However id really encourage getting him involved in extra curricular groups and clubs, just so he can socialise and continue to develop in that way

Honestly I would be pushing for more medical input. Have you had any genetic tests or any indication that he might eventually be diagnosed with something? His short stature and extreme tiredness suggests something underlying that hasn’t been found yet.

Have you considered growth hormone therapy? My eldest is considered as petite for her age, but not on the same scale as you are describing. Her paediatrician predicted her adult height to be around 5ft 2, whereas her sister is predicted to be 5ft 11 . When she was younger her paediatrician mentioned growth hormone, however as she got older and started to pull a little more into line with her peers, it wasn't mentioned again. From what I remember, there is a lot of drawbacks to it, and sometimes it doesn't improve things at all, but perhaps worth a read? As another poster suggested, I would also look into genetic screening.

That sounds really hard. In your school what qualifies for TA help? Round here it's any child who is struggling. Doesn't need a diagnosis. Also afternoons tend to be more topic based with core maths and English done in the morning.
Fatigue management and pacing are things that the sendco or the class teacher really ought to be be able to manage.
If he's taken out of school, where will he get to practice his resilience which he will need to do. You can teach him the skills but he will need to be in an environment - school, clubs etc - which allow him to demonstrate this to himself to be really resilient.
In your shoes is definitely go back to thd class teacher and the sendco.

I agree with Haworthia. At age 6 perhaps there are more things that could be tested than at age 2/3 or something that was missed might show up better now. Worth asking again in case someone has a new thought.

As to ways to help - would you consider him repeating the year at school? As a small August born boy who struggles with tiredness, he seems like a perfect candidate for delayed entry to school, I know he’s now y2 not starting school but it’s not too late to put him in a more suitable year. Maybe in a different school, if it would feel too uncomfortable for him to move to y1 in his current school?

My DD gets very tired in the afternoons due to a medical condition, for the first year and a half of school she missed one afternoon a week (plus a few ad hoc full days off when exhausted) and it made a huge difference. She gradually built up and now age 7 mostly does a full week, but misses swimming and has a quiet area she can go to at playtime. We also have very quiet weekends. Might these things help?

Poor You. Please please press for more support from school ie senco.
But more importantly for better medical support from GP, specialist, re growth hormone or whatever else can be done.

Have a relative who did not grow. Wore the same clothes and shoe size for years. Now an adult and much taller than others of the family of the same sex.

my ds has always been tiny for his age he has just turned 21 and he is 5ft 3 i was told that he would not get to 5ft
he has not let him affect his life he has a big personality and lots of good friends.
i also have a 4 year and half year old dd who is the size of a 2 year old and like your son she gets tired being at school all day and we spoke to the school who said we would see how it went and if it was too much we could limit her school days to half
so far she is coping by coming straight home from school and having a nap for an hour and we will wake her and then she will have dinner and play for a while before bed
before she started school she was still having an afternoon nap for at least 2 hours and even now on the weekends she still doe this

Thank you all for your replies.

We have already discussed genetic testing and neither his consultants thought it was necessary, every test he has had has come back normal. As for growth hormone, it was not thought it would be effective because my son produces an above average amount of growth hormone. Typically growth hormone would be effective when there is a lack of growth hormone production.

I am taking him to see a gp this week to discuss my concerns and see if there are any other tests or treatments that we can try. I think I'd like to also discuss this with the school and see if there's anything else that can be done. He isn't reaching his full potential academically but the school don't seem at all concerned by this due to the circumstances but I really don't think he should be hindered by his lack of growth.

Our son is about two years smaller than his peers: he was born very prem, very under-weight. He's growing consistently but it's below the 0.4th centile on growth charts. He was referred to Endocrinology with a view to possibly being given growth hormone treatment, but we declined* and he was discharged after 3 years of monitoring. Afternoon tiredness is not something that we or the school have ever noted. I would suggest that you ask the GP whether blood tests can be arranged to check for things like anaemia, vit-D insufficiency etc that could all be causing the loss of energy later in the day.

*We declined because our son is ASD/SLD to the extent that he attends SEN school. Although he is two years smaller, he is more like six years behind NT peers. Because of his behaviours he takes a lot of 'handling', e.g. co-ercing into a child seat in the car, and that is much easier with a smaller child. His lack of height will not be the biggest problem he faces in his adult life.

It seems there many things that could cause growth issues and tiredness, for example heart issues, lung issues, gut issues/malabsorption of nutrients, genetic issues... What tests did they do OP other than hormones?

Glad you are going back to the GP. I would ask for a referral to a really tenacious paediatrician (a specific one not just the paeds clinic)

Has he had a bone growth scan? My youngest was sent for various tests as he was very small, the bone growth scan showed he was three when he was almost seven , growth hormone was suggested, we declined. Like your son he got exhausted easily, he is now 14, six months ago he just started shooting up, you could see a difference every week, he is now only slightly smaller than his friends, he was wearing 10-11 year old clothing before the summer and is now in 13-14 so it’s a massive difference.

@alwayscauseastir Genuinely not trying to be goady at all but growth hormones have been suggested because she could be 5’ 2”? As someone who is 5’ 3” that seems absolutely insane. 5’2” is a completely normal height?

OP the poor mite.
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
Sorry to highlight the entire paragraph I really dont think it is true, my advice if you can afford it is to have an occupational therapy assessment this report will entitle him to extra help.
My DD was tiny, she really struggled in school got really tired, not to worry you but at 7 we discovered she had extra needs.
Check the latest disability act, I'm talking about Ireland here but every law we have we copy the UK. 🤣
Do you have an assessment of need system under the disability act 2005.
I think he would really benefit from on OT assessment first before home school.
He sounds like he is thriving otherwise.

My tiny DD is now a 5ft 2inch at nearly 11.

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

I think you need a second opinion. 5 pounds at term is not unusually small and children born at this weight will achieve their full adult growth potential. There is definitely something else going on that he hasn’t been tested for.

I would ask for a referral to a specialist children's hospital , you may need to see a local paediatrician first but it doesn't seem to fit with there being nothing else wrong. A 5lb baby is not that tiny and would typically be a normal height even if on lower centile. If growth hormone is normal then why hasn't he grown ? Plus the excessive tiredness needs further exploration, many three year olds can do a longer day at nursery than a school day and not be exhausted. I would push to be seen at the nearest big children's hospital. One of my ds used to go to Birmingham Children's hospital for a rare autoimmune disease which after referral resulted in lots more investigations being done than the local hospital could do.

@user1473878824 that was some years ago now. She was discharged from her paediatrician when she was 5, and she's 11 now. Absolutely nothing wrong with being 5ft 2, however it will be incredibly small for our family. I take the predictions quite lightly though. She's in year 6, and some girls are around a foot taller than her...but some are the same height. Her cousin is a foot and a half taller, and is 9 months younger than her. As a 3 year old though she was incredibly small and struggling to thrive at nursery. I wouldn't say she is struggling in any way now, and if she's a little dinky compaired to the rest of us...so what

Thank you for all your replies.

I've got an appointment with our GP today so will update on what they recommend. He has has been tested for nearly everything just so they could rule out any possible cause for his lack of growth. Of course the height he reaches as an adult is important but my biggest concern right now is that he's struggling at school. I have previously wondered whether there may be any additional learning needs but the school have said they are not at all concerned about that. 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. 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.

Unless that consultant was someone who specialised in growth and endocrine disorders at a national level referral centre I simply could not allow this to be the end of the matter.

Plenty of rare disorders are diagnosed after other consultants have ‘ruled everything out’. You are still worried so you are perfectly within your rights to request a second or third opinion. It can be helpful if you have a specific person in mind.

Good luck and best wishes to your boy.

My dd was born full term but only weighed 4lb
She struggled like your son and I was fobbed off by the drs for years as despite endless tests they couldn’t find anything wrong with her.

She is now nearly 13 and last year I finally found a gp who listened to me and referred her to a genetic specialist in London.
After a year of tests we have narrowed it down to one of 3 rare chromosome disorders and are now waiting for the results to come through in a few weeks.

It took me 12 years of fighting but now we are so close to finding out what is going on and getting her the help she needs.

Please trust your instincts, keep pushing the gps, consultants etc.
A lot of them aren’t up to speed on all the genetic conditions there are.
My dd’s father had the same issues as a baby.
My dd’s consultant told me there was no genetic condition passed from father to child which stunted growth in the womb.

I trusted her and didn’t push it, but she was wrong.

What size clothes is he in OP?