toddler - failure to thrive causing anxiety

[Robin198]

My 18 month old hasn't growth (height) since he was 9 months. At his 12 month HV check the HV said 'looks like a 8 month old' and since then we've been referred to the paediatric consultant, had physio input, bloods take to check major organ function, diabetes, growth hormone, thyroid (all came back within the healthy range) and we are waiting to hear back from genetic tests. In the meantime it's a 14 week wait to see the endocrine specialist.
The baffling thing is my toddler eats anything and everything, always has done. His weight is fine but he is tiny. He was late to walk (still only walks while holding your hand or furniture) but is very sociable and happy. He sleeps 8-7 every night and is generally very content.
With each appointment we have I get more and more anxious that there is something seriously wrong and the fact that all the 'common' tests are coming back as within normal is making me even more stressed as to what it could be.
Does anybody have any experience of anything similar?

[weehoo]

Hi - yes we had all this with DD some years ago!

She was born fairly large so no cause for concern. There were some feeding problems which we overcame and her weight tracked the 50th febrile. It was only when she was just over a year old that I tried to measure her height and realised she was tiny!

Initially it was connected to possible food allergies but resolving those made no difference to her height. The consultant felt she had 'features' of something so after blood tests and bone scans she had a test for growth hormone deficiency (this is a complex and invasive test so not done lightly). We were certain this was the cause until it came back normal, but not long after we discovered she had a generic condition which turned out to be inherited from me (although I am average height)

She's now 7 and has been on growth hormone for 4 years and currently around 20th centile.

Was your son born small or has he gone down the weight/height line? Based on parental heights, what would you expect? DD dropped dramatically down the charts and she has medium/tall parents so both those things suggested there might be an issue.

It's difficult but try not to worry as he is happy and healthy. If there is an issue, there are potentially many things they can do to treat it. The child growth foundation group on Facebook is really useful too - we talked to lots of other parents on there while we were trying to get a diagnosis

[Robin198]

Thank you so much for your reply.
He was 6lb 9 when he was born and measured along the 50th until about 9 months then he literally just stopped growing in height and has been off the chart since he was about 13 months.

My husband and I are both average -ish. I’m 5’7 and he’s 5’10. The consultant plotted our heights to give a prediction but he’s nowhere near where he should be.

[Robin198]

Sorry I’ve just re-read your comment about growth hormone deficiency. Our son had a blood test which the consultant said was to test for a GH deficient but it was just a simple blood sample. I’m assuming the procedure your daughter has differed from this?

[AnotherMurkyDay]

Has he been screened for celiacs disease?

[Embracelife]

Coeliac disease?

[Embracelife]

Basic blood tests look at growth hormones but to test more thoroughly they do one which involves taking bloods every hour and can make them feel v sick. Look at child growth foundation.

[Embracelife]

www.gosh.nhs.uk/medical-information-0/procedures-and-treatments/glucagon-test

[weehoo]

Yes the procedure for GH is pretty hardcore - it's called a stim test and involves a full day in hospital. Child has no food all day and then bloods are taken at regular intervals. DD had a bed and we just tried to distract her all day. She was only distressed when they inserted the cannula at the start then she was fine really.

It sounds like there might be something amiss given that he's dropped quite dramatically down the chart. It's good that you are already in the system in terms of tests, although it doesn't sound like there's anything to be alarmed about at this stage.

I see others have mentioned coeliac disease - DD was tested very in depth for this so it's certainly a possibility for a child who's not growing as they should be

[Embracelife]

Dd did all tests but s growth issues attributed to coeliac disease. Once identified she grew again tho still short

[Robin198]

Thank you so much for all of these replies. We haven’t had a test for coeliac so that I’d something to bear in mind.

Stim test sound unpleasant to go through but right now I’m so worried I’d try anything.

I’ll look at the child growth foundation too, thank you all so much.

[Whitelisbon]

My ds(now 14) has had the same a few times over the years.
He stops growing, they run loads of tests, all come back normal, then he grows again.
He's tiny (wearing 9-10 years clothes, still needs a car seat), and thats after a recent growth spurt.
He has coeliacs, but he's been gluten free since 18 months, so its unlikely to be causing huge issues.
We've never got to the bottom of it, and every time they start thinking about growth hormones he has a growth spurt, so he's managed to avoid them so far.
He's still well below the charts, for both height and weight.
We see endocrinology regularly (for this plus some other things unrelated to growth) and hes always baffled.
Sorry, its not much help, but some solidarity.

[Embracelife]

With dd she grew after coeliac diagnosis
Basically she had stopped growing. Gf diet made huge difference.
but didn't catch up as such. But I think destined to be petite (well 5 feet so within range)

[Embracelife]

Definitely coeliac should be screened for. Ask in case they did already?

[Embracelife]

Dd failed to grow from around same age was eventually diagnosed age 4. It s good you in system already