10 year old son very small below 0.4 percentile very worried

[MollyBunny154]

I wonder if any one can give me some advice. My youngest son has always been small, he was born 5 weeks early. He was 5lb when born. He was initially between the 2nd and 9th centile for weight and height for first few months then dropped to the 0.4 percentile. Then dropped below the 0.4 centile. I took him to the doctors many times and had him referred to a pediatrician as was very worried, but pediatrician was not worried. They just kept a eye on him.
Eventually they did do some blood tests and X rays but said nothing showed up apart from anemia which they put him on iron supplements for for a while.
They said he was probably just small due to being born early and would catch up. But hasn't.

Beginning of last year is the last time my son saw peadiatrican, I asked if they could test for growth hormone deficiency, as I just know some thing is wrong, she agreed and said she would arrange the test.

I assumed it would be the test where they take some blood then give you a medicine to stimulate growth hormone and take more blood over a 2 hour time period.
But when we got there they just took one lot of blood and sent us on our way.

I didn't think a normal blood test could pick up a growth hormone deficiency, can a normal blood test detect a growth hormone deficiency?

Any way that test apparently came back normal so she discharged my son and hasn't seen him since.
My son is now 10 years and 3 months and is only 121cm tall.

I have 3 other children and none of my other children were this small. My oldest son is 18 and over 6ft, my other son is 16 and is 5ft 5 andy daughter is 13 and also 5ft 5.

I thought by 10 he would have started to show some signs of a growth spurt and catching up but no.

He is still below the 0.4 percentile. Should I be worried. Has any one else's child still been small at 10 years old did they eventually catch up.

Could he have a growth hormone deficiency if test they supposedly did came back negative. I'm worried that he does and concerned that if he does have a growth hormone deficiency that they have left it too late now.

What age should a child start on growth hormones if have a growth hormone deficiency for it to be most effective.

Any advice much appreciated

Thanks in advance.

I have no advice but that sounds stressful for you. I would beg and borrow the money for a private assessment as it sounds like he needs to be seen.

Have you spoken at length with your GP/Paediatrician about your concerns after the test was negative?

In most cases the percentile scale is twoddle as they don’t account for genetics and diet but as you have genuine concerns I would be pushing for another review and if you feel you aren’t getting anywhere I would look at a private consultant appointment x

I did speak to peadiatrican at beginning of last year after test results, and told her my concerns but again she did not seem worried and just seemed annoyed that I was worried and seemed to think I'm just a paranoid mum. But I'm not I'm just concerned and my gut is telling me something is wrong, call it mother instinct.

She then discharged him, and told me to keep a eye on his height and weight. The only thing she said was he needs to grow 6cm per year as long as he grows 6cm a year he is fine. And to contact her if he doesn't grow 6cm in a year.

In they last year my son has only grown 2cm. So will be contacting peadiatrican again today, I will also look in to him seeing a private specialist.

Just wondered if any one has experienced similar and if your child eventually caught up growth wise.

Again thanks in advance

@MollyBunny154 I have five children, when one of mine was 6 he didn't grow for a year, his growth of the chart was flat, the GP spotted it and because I have coeliac disease referred him to a gastroenterologist, he had no symptoms other than not growing. He had negative antibody test for coeliac and negative biopsies but two copies of the DQ2 gene. The put him on a gluten free diet and stomach pain that he had never previously mentioned went away (he thought it was normal) and he grew and put weight on within two months. He had been my smallest baby (he's a twin) now at 15 he's 5' 8" and still growing. I just wanted to let you know that sometimes the tests come back negative but if I hadn't been already diagnosed (I was only diagnosed a few years before) then we would never have known and he may not have reached his full height potential.

It sounds like there is a genetic link if your 16 year old son is only 5ft 5. Was your 18 year old always tall or did he have a huge growth spurt or just keep growing post 16?
I understand your concerns as I have a tall child 6ft 1 at 14 and a small child around 2nd centile ( I dont know his actual height as he gets upset if you measure him) but thats just the way it is one has my husbands tall genes and one has my families small genes.

If he is going down in percentile I wouid be worried too I also think they shouid trust a mother's instinct.

Does he get tummy pain or aches anywhere?

I have had similar worries with my son. He was on the very low centiles for height and weight at the same age. He’s been anaemic on and off for years but the Dr always stopped the iron medication as soon as his levels were back to normal, despite me saying they will drop straight away again. I was so worried about him being underweight and tiny and no appetite during the first lockdown and the drs would only do phone calls. It all came to a head end of 2020 when they finally agreed to do a blood test and he had low red and white blood cells to the extent they put him on a 2 week pathway to see a paediatrician.
He had the blood test for growth deficiency and also the x rays.
Did the hospital explain the x ray results to you? The dr explained that my sons x Ray showed a bone age of 2 years younger than his actual age. Which was a reassuring result. Dr explained that your body grows until your bones reach a certain age (18 I think for boys) so if his bones are showing a younger age then he has longer to grow and catch up. They would have been worried if his bones showed an older age than him.
His blood test showed no growth deficiency.
We got a referral to a dietitian for the weight and the paediatrician put on his medical records that the gp was not to stop the iron prescription even if blood results indicated a normal level. He’s been on iron for a couple of years now.
Dietitian prescribed him shakes with extra calories in and gave ideas on how to bulk up the little he eats with more calories. I’m always putting extra butter and cheese in his meals. He has the ‘big kids’ full fat milk that has extra vitamins in and I encourage him to drink that rather than water as often as I can. If he says he’s not hungry and can’t manage a meal then he has a big glass of milk instead.
He was 128cm at 10 years old. He’s 14 now and 153cm. He’s grown 8cm the last year (the most he’s ever done in a year) and is still the smallest of his friends but doesn’t look quite so tiny next to them any more! He’s finally a bit taller than his younger sister (she is 10 and only s couple of cm behind him). His 16 year old brother is over 6ft.
His appetite is still hit and miss but I think overall he’s eating more and I am optimistic he is growing more! I don’t think he’ll ever be as tall as his brother but I think he’s going to get to a decent height 🤞

I have sent you a PM with details of our experience. My advice is: keep pushing. Insist on close monitoring in his teens as there is a short window when growth hormone is an option and you might discover, as we did, that your 'monitoring (ie ignoring) appointments fall outside this window, bone plates are closed and hormone treatment is no longer an option.

Be the difficult pushy mum behind the scenes but don;t make out to your son that being small is a terrible thing. because he may end up not getting treatment, being short and he needs to have come from a background that doesn't stigmatise short men, Casually mention that if he is short, it's no big deal. Short men from Warwick Davis to Tom Cruise have thrived in life, doing what they love.

My 18 year old was always tall, we were told he would be tall from the moment he was born. I have no idea where he gets it from. His dad is 5ft 7 and I'm 5ft 5 so neither of us are that tall.
No one that tall on either side of our family.
My oldest continued growing right up to 18. He has massive feet and hands too.
My 16 year old is my height and still growing and I'm sure will reach his dad's height at least. He was never as small as my youngest.

My biggest concern is my youngest notices how small he is now compared to other children his age and it upsets him as other children tease him.

He is perfect to me, I always tell him the best things come in small packages. But I'm concerned that he will start to get bullied especially next year when he moves up to secondary school.
Children can be so cruel, believe me I know, I was badly bullied as a child and don't want to see him go through the same thing.

He is still wearing 5-6 and 6-7 year old cloths to give you a idea as to how small he is.

Also just for back ground he was late/delayed reaching every mile stone. Could not sit up without support at 1 year old had to use a special chair, had physio and occupational therapy. Didn't roll over until after 1 year. Didn't start walking until nearly 2 years. Speech was delayed so had to have speech therapy. He is behind at school, in reading and writing but above his age maths.
Also he had torticollis as a baby and had to have surgery. And he has mild metopic Craniosynosis.

We went through this with my DD who is now 9 when she was a toddler.

Full stim test (for GHD) came back normal but blood tests revealed a genetic condition.

Look up Child Growth Foundation on FB - they have several closed groups for various conditions. Suggest joining the main group and keep an open mind while you press for answers. Good luck and happy to answer any questions

@Remmy123

If he is going down in percentile I wouid be worried too I also think they shouid trust a mother's instinct.

Does he get tummy pain or aches anywhere?

Yes he does get tummy pains, we have noticed that he gets tummy pains mainly if he eats dairy or wheat. He also vomits if he eats dairy. He was tested years ago for both dairy allergy and celiiac disease but both came back negative despite his symptoms. He has been on a dairy free diet for years under the guidance of a dietician and had to remove gluten from his diet again under guidance of dietician as tummy pains were getting so bad. Tummy pains have gone since removing gluten from his diet but still no improvement in growth.

I am not clear from your post if he was tested for Coeliac disease OP?
If it’s been ruled out then perhaps that is just his normal centile.

Hermanfromguesswho

Peadiatrican never explained x-rays. My son has seen a dietician and was also put on the shakes. When he was on the shakes it was the only time he put on good weight. But after a while our GP would not give it to our son any more and would not listen to Dietician. You see dietician would contact our GP and GP would sort out prescription and we would go and collect each week. We had to stop when GP refused to give any more.

I would be changing gp'they sound useless! How dare they refuse to carry out the instructions of the specialists!

what is his bone age, I suppose that was tested? My ds is very small as well, but it is because we are small AND because his bone age is delayed (so in a way he is double small). You can't change the fact that parents are small, but a bone age delay will be caught up.

I would definitely keep pushing with paediatrician

I don't know what my son's bone age is. I believe his bone age was tested. He had a x-ray of his hand and wrist at beginning of last year is this how they work out bone age via x-ray? This is all peadiatrican did along with a normal blood test.
Peadiatrican never told me his bone age, she Just said tests showed nothing.

Just realised I forgot to put my sons weight in original post. I weighed him today and his weight is 20.7kg. this in my opinion is very under weight. Does any one else agree.
I have tried contacting his peadiatrican today but she is out of office on annual leave and won't be back in office until late next week.

Are there any specialist drs that specialise in growth problems. If so what are they called. As wondering if I should try and get him seen by a specialist instead of peadiatrican as don't really trust peadiatrican. But don't know what kind of specialist I'm looking for.
I'm based in the UK if it helps.
Thanks again everyone for your replies you advice is very much appreciated

Hi OP

He needs to see an endocrinologist. My son is under one now and we used my husband's private health. My son is 13 and hasn't started puberty, his growth has slowed since secondary school so she is doing hand X-ray and some other tests with the view to starting hormone injections to kick start it. He is below the curve on the chart I think 25th percentile and it's really bothering him as his mates are much taller and going through puberty!

Do you have private health?

If he's not having dairy are you giving him calcium supplements? DD is coeliac and also growing out of a dairy allergy so the dietician insists on calcium supplements as well as including other foods high in calcium.

Coeliac is closely linked with lactose intolerance (not dairy allergy) and can often result in restricted growth due to lack of absorption of nutrients. Personally I'd be looking to repeat the TTG coeliac blood tests but your DS would need to be consuming gluten for six weeks prior to get an accurate result.

Yes my son is on calcium supplements, dietician told us to give him calcium supplements , he is on a fairly high doesages of calcium supplements, he is currently taking about 600mg which is amount recommend by dietician, he also has a diet that includes foods high in calcium. I know how important calcium is in diet.
I will talk to peadiatrican about repeating TTG Coeliac blood test, although I'm neverous about putting him back on wheat so they can re test as I've seen how much pain he is in when he eats wheat it's horrible.

My DB was 4ft 6 ins at 13 (when he had his Barmitvah) and 5ft 6ins eventually.

Not tall but fine. And his parental heights were appropriate to his eventual heights.

My son is 14 and is also small. We took him to see a paediatrician privately. He did the hand X-ray and said that showed he was still growing and hadn't hit puberty yet. Im still worried. He says he's the smallest in his year. Im giving it a few more months and then will take him back to the Paed. He's grown about 1cm in the last six months. It's very stressful.

Op I would go private. He is smaller and lighter than my 6 year old and for a 10 year old I would also have concerns. It seems that it could be linked to his intolerances too. I would definitely go private if you can and also badger and badger the gp and paediatrician too. It must be so frustrating for you

I would get him referred to an endocrinologist. Two of my DC have had delayed puberty and have been under the care of the same endocrinologist. It's very reassuring having someone check their bone growth and other indicators on a regular basis. With DS1, puberty eventually kicked in but he was 2 to 3 years behind a lot of his peers. He was also wearing clothes for a much younger child and I remember worrying whether we could find him something appropriate to wear to his prom at 16 when he was still very small. At 19 he's now 5'8" and still growing.

DS2 is a more complex case as he has a very rare chromosome disorder and we don't know what his prognosis is. At almost 16 he's showing no sign of puberty but at least he has a specialist monitoring him. We're fortunate that we have a very tenacious paediatrician. We didn't find out about the chromosome disorder until he was 12 when his paediatrician requested genetic testing. He also has dietary/digestive problems which we've failed to get to the bottom of so far.

X ray of wrist and hand is bone age scan. Agree with pp he needs to see paed endocrinologist NOT paediatrician. Phone child growth foundation. They will give you an idea of good ones in your area. You can often have one private appt then they will refer you back into nhs. Good luck, OP. Don't be fobbed off.