2.4yr old ex-prem fallen off growth curve (below 0.4th centile).

[Cluuish14]

Hi all,

My son has just fallen below the 0.4th centile, he was premature so has always been at the bottom of the charts. We struggled initially when he was a baby to get him to grow, and eventually he was put on a high calorie formula that jumped him up to the 2nd centile, and he remained on that curve for most of his first year.

He transitioned onto full fat cows milk and was still following his curve until just before his 2nd birthday (March 2022), this was when we stopped giving him the baby bottles, and he refused to drink milk from a cup, he was seeing a dietician who was not concerned as he was having calcium with cereals, and in other foods, but looking back at the charts now I can clearly see that that was when his decline started.

He started to fall off the curve and he is now below the 0.4th centile for weight and height. Head growth however has never been effected and is still following the 25th centile perfectly. This is why I imagine his development has not been at all impacted. For a 2.4 year old he is hitting all expectations and in some areas exceeding them, which is why I'm constantly asked at playgroups 'how old is he?' because he looks like a very advanced 1year old, walking/running/climbing and almost talking in full sentences.

From day one in hospital when we were first told he was under growth in the womb we had it explained to us that he would be born premature, and small for his age, but that he would 'catch up' in size by age 2. So why has this not happened!! I'm spending all my time trying and failing to find high calorie meals that my DS will eat, and I'm now faced with a very strong willed, fussy toddler who has a very small apatite. I'm beyond tried, and so worried. I've been pulled back to were we were in his first months stressing about his growth and monitoring this intake like a hawk!

I just want to hear about other peoples similar journeys, especially those that are now through it all, and have a fully grown happy child. I know deep down that eventually he will be a strapping teenager with the apatite of a elephant, but right now I feel like its down to me to get him there.

He was under the hospital and a separate dietician until earlier this year, when he was discharged (against our wishes). The hospital have always been very frustrating, unlike the H.V and other professionals my DS sees the NICU never seemed to bothered about the growth chart system. His last 4 check ups (9m, 12m, 18m, 24m) were carried out over the phone (blamed on Covid), despite our request for them to be in person. This meant that all weight and height measurements were taken by me with non hospital equipment, and now I can see they were not accurate. This all came to light this week following DS's 2-2.5yr HV check up, which was carried out at my house with their equipment. Which has subsequently led to DS being referred back the hospital by the HV. Now awaiting an appointment. 😞

How prem was he and what did he weigh at birth? Some kids are just meant to be tiny, if he’s always been small, but is happy and exceeding milestones then I wouldn’t worry.

My DD was 4 weeks premature and had IUGR, she weighed 1.6kg at birth. She’s now 2 years and 2 months and still tiny, people often mistake her for an 18 month old but I think she was always meant to be small.

Mine was premature but born on the 92nd centile for her gestation. She dropped centiles until 2 years old when she was on the 9th centile for height and weight but developed normally. She is now 4.5 years and has shot up this year and is probably pretty average.

Hey @Cluuish14 just wondering how you're getting on? I'm looking for happy ending stories too as my LO (almost 9 months) has never grown above the 0.4th for height 😢 doctor is investigating for dwarfism which is incredibly scary but I'm hopeful he is being over cautious. I've managed to get his weight to 6th centile after being below 0.4th until 6 months. I too feel it's a constant battle to get his milk down him, keep him on the boob and feed him all the high calorie stuff. It's exhausting. For him to gain next to no weight 😩 I hope your LO is doing ok x

Mine is a happy ending story but my son was full term, 7lbs or so. Dropped to about 0.4th percentile for height for several years and was a picky eater as a toddler. We knew there were growth hormone issues in the family so were already linked with paediatric endocrinology consultant. In mid teens the decision was taken to (self administer) growth hormone and by early 20s he was over 6 foot and is a good cook.

GHD (growth hormone deficiency) is not the same as dwarfism. If this is the diagnosis it is treatable. HTH

2 years old is when you stop correcting on the growth chart for having been born premature. If he was significantly preterm that alone could make a fair difference to the curve on the growth chart. So, for instance, if a baby was born 2 months early, then at 1 yr 11m they'd be plotted at 1 yr 9 months, but at 2 yrs they'd be plotted at 2 yrs...and they certainly wouldn't have grown a 3 month amount in 1 month.

Thank you @Alison4y my little lad is 14 months now. He's climbed to 2/3rd centile for height and 24th for weight. He is doing well although going through a mainly white food picky phase 🤦🏻‍♀️ we just had results back today for a suspected genetic growth hormone deficiency - SHOX. That was negative. So we are back to the drawing board in terms of what is going on. It just doesn't make sense give mine and my husbands heights. It's reassuring to hear your son didn't commence GH treatment until much later on. They aren't keen to investigate any further at this stage and I was worried delaying treatment would impact him later on in life. Thank you! X

Thank you to everyone who has posted, this has helped me alot.

@Alison4y Alison4y specifically that was great to hear your DS story, and is the path we are now looking onto. DS has been referred for a genetics Test, as when looking into mine and DH heights it's possible he could have Short Stature Syndrome. Will await test and results and go from there.

Thank you everyone x

Good luck with the tests.

My daughter is 50th-25th for weight, currently just under 25th and fell from the 25th percentile for length at 1 to the 1st percentile for height at 2. She's following this line ok at the moment. She is 3y3m and is just starting to put grow her 12-18 month sized clothes. In the summer we went on holiday with a little boy that was 15months younger than her but the same size! You could tell by the way she moved and spoke that she was older.

We are in a slightly annoying period as she is fully small child - potty trained as needs knickers but we couldn't find any in 12-18.months luckily she was close enough to 18-24 months that they stayed up! All the outfits in her age have poppered vests which aren't helpful for a newly potty trained toddler!

She will be starting school on September. We have a choice of 2 schools ones uniform starts at aged 2 which will be her size but the other schools starts at aged 3. It's not compulsory to have the branded cardigans and what not but we don't want to introduce other points of reference. We have already had to set her nursery workers on alter for any "tiny" language being directed at her from other children as she keeps coming home upset that a child has told her " she's not big she's tiny" and she's not tiny she's big. She's quite sensitive about it already. They have a size chart outside her room and there are a couple of other children on the bottle line with her which does make me feel a bit better

@Superscientist Just a thought about uniforms, and of course I don’t know what your branded ones are like, but when DS was starting secondary school I bought a small plain blazer from M&S and took the branded pocket off an old school blazer (it helped that I ran the second hand uniform stall) and sewed it on. Or could you contact the company that make the uniform and ask for a special sweatshirt/tshirt to be made? Or take in the seams yourself? The right school is probably more important than the right uniform!

You may also find other parents don’t buy the branded uniforms. Our primary school tshirts were branded red or white with green sweatshirts, but I sent my redheads in with plain green tshirts and I don’t remember them ever being teased as a result. (Including the v small boy). HTH

My grandmother was a seamstress and made all of my school uniforms from scratch as I was also very small and shops didn't stock anything aged 3 then. She has taught all of us how to mend, adjust and make clothes!

If she went to the school that doesn't do branded uniforms she would just go in unbranded. She would be mostly unbranded either way but it would be nice to have her in the same cardigan or jumper as the rest of her class on school picture day for example. It's a very minor part of our decision about what is the better school. It might be more of a problem if she stays on this percentile for secondary school as she would be the size a 7 year old and here branded uniforms are compulsory. We would be taking badges off 2nd uniforms or resizing 2nd uniforms in this situation

Firstly, if he is healthy, happy and hitting milestones, it is not really an issue, especially if height and weight are both low. It just means he is small; 1/250 babies will be below the 0.4th centile.

Also, as a PP has said, you should correct for him being prem. If he was born 2 months prematurely, have a look where he sits on the centiles adjusting for this.

Are you and your husband small and light?

@Alison4y what does self administer mean?

mid teens the decision was taken to (self administer) growth hormone

The growth hormone my son was prescribed was administered by daily injections. Because he was a teenager he was deemed capable of doing it himself, so I didn’t have to do it for him! The dose came in pre-packaged capsules with disposable needles and was fairly straightforward and or is what I think they call subcutaneous ie very very short needles.