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.

Our endocrinology referral for DS1 came via our GP and was quite straightforward. We took DS1 to the GP, said we were worried about his size and he got referred,.

My 23 year old son is 5ft 3 he was a normal birth weight at 7lb 11 but within weeks he was going down on the growth charts.
He had hand xrays that always came back clear.
He grew 9 mm in 9 months and we were told he was small but everything was clear.
He didnt start puberty until he was 15/16 and had a growth spurt.
But at 23 he is 5ft 3 and is fine with it.
Your sons weight does seem low my Dd is 7 and is 116cm and weighs 21kilos and that puts her on the 9th centile so she is small for her age and her hand xrays shows she is 1 yr and 9m behind.
I hope you get the answers for him.

Thank you every one for your replies, I decided to try contacting peadiatrican again, tried phoning but could never get through and she never rang back. I sent peadiatrican a email and got 1 reply and in this reply she does her normal thing of trying brush off my worries, she asked me a couple of questions about if he was still seeing specialists at Alderhey Childrens hospital, which he is but he isn't seeing specialists for this he sees specialist for his cranio and other conditions. And they don't deal with growth issues so won't look in too this.
She said he is due to be seen by her at end of year.
I emailed her back to say I was not happy to wait until end of year and answered her questions but she is now not responding to my emails. No reply in nearly 3 days.
It's like my son is a inconvenience to her and she just wants to get rid of him.

I don't know what to do peadiatrican just won't take me seriously. Im going to take my son to see GP tomorrow hoping they might be able to refer my son to a specialist. Not holding out much hope though as GP is as useless as peadiatrican.

I have contacted a peadiatric endocrinology but they say he needs to be referred to them by gp or peadiatrican.

So don't know what to do if GP won't listen.

I'll keep you all updated as to what happens.

Thanks again for your replies.

Grr I just typed a long reply and lost it because of mumsnet "having a moment".

In short, please phone/email the CGF. You don't have to be a member. They are lovely and helpful. They will help you find an appropriate, knowledgeable endo or even help with what to say to your GP.

Their website is www.childgrowthfoundation.org. Go to the about us tab and contact us is within that.

If you can afford a one-off private appt, they will recommend endos in your area. If not, they can still help you with the process. A child under the 0.4th centile is to be taken seriously, and at 10, something can still be done if appropriate. Very best of luck.

If not too outing, I will add that my child's (lovely, helpful, caring) paediatrician whom they saw initially discounted any endocrinological issue and was certain the poor growth/failure to thrive was to do with my child's digestive system. They were completely wrong.

any news?

I still haven't had a response from peadiatrican. Tried to book a appointment with our GP/Dr. But found out that sadly our GP/Dr has passed away. So have got to make a appointment with another new GP, but they are on leave right now and won't be back until next week. I spoke to new Dr briefly before they went on leave and they agreed My son is very small, and insisted I wait until they get back from leave so they can see them.

So cant make a appointment until next week when they are back.
Hopefully my son can see New GP next week.

My son has a appointment at Alder Hey in 2 weeks time to see a specialist for something else, whilst there I might ask that specialist if they know any one in the endocrinology department and if she can refer my son.
Do you think this would be a good idea

Anyway I will keep you all updated.

Thanks again for your replies

Hi there

Just wondering if you had an update on this. My almost 11 year old is 126cm and 20.8kg and we are seeing a private Paediatrician this week.

Just a update. After a lot of fighting and putting my foot down, my son was eventually referred to a Endocrinologist.
My son saw Endrocrinologist, in november last year at Alderhey Childrens Hospital. It was a very rushed appointment. Did some tests and sent him away.

In February he was admitted to Alderhey for a growth hormone stim test as they suspected he has a growth hormone deficiency.

They messed up test but continued despite messing it up.

He failed that test although I don't know how accurate results were due to them messing up.

He was admitted again on 1st march for a second growth hormone stim test. We were told they would contact us in 1 week with results.

It's been 5 weeks and we have heard nothing, I've tried ringing no one answers, I've left messages no one rings back, I've sent emails but no response.

So I still don't know what's wrong with my son and if he has a growth hormone deficiency, I feel we are not much further forward than we were last year.

Considering going private as have had enough.

If any one elses child is small with similar symptoms I would recommend getting them reffered to a Endrocrinologist. Endrocrinologists specialze in growth conditions as well as diabetes.

If a child has a growth hormone deficiency the clock is ticking to start treatment.

The sooner they start growth hormone treatment the better.

Hope this helps

my son is also on 0.4 of the percentile chart, he is 14 (coming 15) and is 145cm bone age etc.. is normal so just generally small for his age. How is you son getting along

I think you are right to be concerned there may be an underlying cause but please don't send him the message that you are worried he will be small. Instead, start reassuring him that there is nothing small men can't do. There is still ugly social stigma attached to being a small man, so you need to counteract it now. "Small man syndrome' is a particularly pernicious attack where small men who behave pushily or aggressively are said to be compensating for height. Tall men who do this (of which there are far more) aren't judged for it.

DS was 0.4th centile and has reached his adult height at 5'5. He was really low in confidence about this for years but he got over it. He has had several girlfriends, has even done some fashion modelling and he doesn't worry about height any more. There's no point.

If he's small, he's small. He can still be successful in all areas of life. What matters is that he is healthy and happy in his own skin.

Has he grown much since your original post? I have a just turned 5 year old taller than your son was last year (and 5kg heavier).

I hope you get some answers. Have you chased the secretary for results? Squeaky wheel gets the oil and all that...

My DS is a lot younger than yours - 3 coming up to 4 - but hasn't grown at all since January this year, I'm very concerned. He's put on weight and eats well, it just seems to be his height but nobody seems that concerned. He last saw a paediatrician in April and we have an appointment to see them again in January where she is going to check his height and then make a judgement call. My son is also low iron and on a supplement, but nobody seems interested in that either!
I'm hoping he is due a growth spurt but have been hoping that all year so if he hasn't grown by our next appointment am going to push for further investigation as I feel a bit uneasy about it!
Hope your son is getting on ok and you're closer to finding some answers.

Allergy tests only test for immediate or IGE allergies. There are also delayed or nonIGE allergies which don't show up on tests and the only way they are diagnosed is by removing the allergen and seeing if the symptoms resolve.

For reintroducing dairy into a childs diet with a dairy allergy there is a milk ladder which reintroduces foods in processed forms and the more purer forms. It might be worth doing the inverse and taking out the top step - milk and see if that helps with the sickness. There are lots of replacement milks now and if that doesn't help work your way down. To see if it makes a difference.

My daughter is 1st percentile for height and although is only 3 she is in 12-18 month clothes so I get the concerns and worries.

@MollyBunny154 can you please share an update? We are facing a someday similar situation. Our daughter at about 8.5 years is 112cm.

@Imkh hi my daughter is 9 years 4 months and she has been either on the 0.4 line or below it since the age of one. She is currently 118.3 cm and 20.3 kg. She’s had lots of blood tests done and her bone age done thankfully she was 2 years behind and is under 6 different consultant for different things. They don’t think it’s great but are not really worried as she’s always been this way. She also has had asthma so they think her medication could have something to do with and she is also on different medication which can cause slow growth. So I’m in a position of worry my daughter hates being small but she needs the medication for health issues. But it might just be the way she is. It’s such a hard thing for the child and the parents

Hello can I ask if your DD has had the growth hormone test?x

Hi there,
We are in the same boat, our son is 8 and 1/2 and is 112 cm weighing around 17kg. He hardly grew between 0 - 3 and then followed a growth curvature at 0.4th percentile, which strongly suggests constitutional growth delay, his bone age was suggested to be 2 years less than his actual at age 4. Tested for growth hormone which was low but apparently not a concern. husband is 6ft and grandads are 6ft2, uncles are 6ft1, I am 5'4 so his predicted height should be 5'10 but the way he's going he's predicted to be 5'3 or less. He has just started to drop off again with some concerning symptoms, blue sclera, headaches, irritable and emotional, leg pains in the mornings (unusal for growing pains) he is on chinese herbs which has helped with the headaches and pains, so we suspect this has something to do with collagen which can cause poor growth. We are talking about getting a methylation test done which will hopefully give us some idea of whats going on by testing for COL1a1 and COL1a2 (brittle bone disease). Happy to connect for solidarity, our son takes the comments on the chin but it's hard to watch, he such a great kid we just want the best for him, would be good if he knew someone in the same boat.