Very small 4 year old DD. Awaiting results

[bumblebee19]

SORRY IN ADVANCE FOR THE LONG POST

I'm just wondering if anyone out there can offer any reassurance or relate. i am currently going out of my mind with worry.
My DD has always been very small compared to her friends but both DH and I are also small.
DD was 5 weeks premature born at 4lb 13 oz but otherwise healthy and no issues were ever raised about size whilst in the womb.

At about 2 years DD fell off her percentile and off the chart and at this point we were referred to paediatrician who monitored DD for approx 18 months who was sure the reason for DD being short was genetic.

she is currently still off the chart at 4 years old measuring a tiny 90cm and just shy of 30lbs. She has just started reception and she is just so so small compared to everyone else.

This week we have seen an ENDOCRINOLOGIST and she said that DD is strikingly small 😢 asked us loads of questions re whether DD has many ear infections, birth marks (both of which she doesn't) looked and listened to her chest, and checked her over. DD does not measure where she should be taking into consideration our heights.
She then started talking about a blood test to check her chromosomes and to see whether she has XX or just one X or 2 with one being off. She didn't mention any type of syndrome but doctor google has pin pointed me in the direction of Turner Syndrome - and I am petrified 😢
We have to wait about 3 months for the results and I'm not coping.
DD is super healthy otherwise and above target developmentally - is hardly ever ill - I just can't believe that this is potentially happening.

Is there anyone going through or been through similar? I would love to hear from you

Thank you

I have no advice, but understand how worried you must be. I assume she has been tested for coeliac's disease?

Thank you for your reply - yes she has. The paediatrician checked that before she was referred to endocrinologist x

I have no advice either,I’m sorry.All I can say is that I work with a lady who has Turner Syndrome.She has a few mild health issues and is small, but not in the extreme. On first meeting her you wouldn’t immediately think that there was something “wrong” with her.(sorry don’t know how else to put it) She is also the most popular person in our office and she enjoys her job, and a healthy social life.I am just letting you know this to hopefully reassure you a bit that if your DD does have Turners then she can still have a good life.

Thank you for your reply. That's is very good to hear that she has a good life.
Can I ask what disabilities she does have or differences?
Funny you should say she is popular as DD has always been so liked by other children, they seem to love her xx

She has a peculiar shaped chest, but I don’t really know how that effects her medically.Her understanding of things can be limited, she has a lower IQ than most people her age, but enough to allow her to work in a limited administration role.She has issues with her blood pressure which I think is due to some issue with her heart, but it is managed with medication.

I should also say she has her own flat which she looks after along with her job and she’s very independent.Of course I don’t know if there is a spectrum with turner’s, but in this ladies case it hasn’t held her back.

Thank you again

I'm praying it's still just genetic but I'm now convinced it's not. It's going to be a long wait x

Turners syndrome has a vast range of outcomes, it's clear if your DD has it then she is on the very mild end.

This is all if and it's totally understandable that you are worried

She's unlikely to have Turners. A generic test is pretty routine, and unlikely to reveal anything out of the ordinary.

What is FAR more likely is that your dd just has a lack of growth hormone and will need growth hormone injections.

Google child growth foundation.

I was 93cm when I started school age 4.5 and remained the smallest in my class throughout primary school. This was 40 years ago and this didn't seem to cause any particular worry - my mum's side of the family is all very short but my dad is 6'1". I know my mum was told I'd be lucky if made 4'11"

As it is, I grew a lot as a teenager and ended up a somewhat respectable 5 foot 4. I still wish i was taller though

Thank you ladies for your replies. I appreciate it very much.

I need to try and get a grip of myself for the next few months

X

My son is 12 but the size of an 8 year old. After a year of tests he's just started daily growth hormone injections as he isn't producing enough of it himself. Hopefully it's something as simple as that for your daughter

Oh I have absolutely been here. My now 6 yo has always been tiny - she still doesn't weigh the required 15kg for the next stage car seat. Nobody made anything of it until she was 3 when she was in A&E for a different reason and they were horrified that her growth wasn't being investigated.

We the had two years of tests, including the genetic testing for Turners Syndrome and all sorts of other things, before they agreed she was just small because me and DH are. There is absolutely nothing wrong with her - she's just little. I'm sure it will be the same for you. Please try not to worry.

Thank you again ladies

Can I ask boneface what height your DD was when she started school?

Thank you x

I also have a tiny DD. I can’t remember her measurements but she was small enough that she went through lots of tests (xrays blood tests for coeliac and CF etc). She was just small. She still is, she’s five now and still wears size 2 and 3 clothes.

Obviously can’t predict your outcome but there is every chance they’re just being uber cautious. Good luck.

I can't remember exactly, but definitely in the 90s, and she's still only 33lbs now in Year 2, nearly 7yo. She is truly fine though, and the difference between her and her peers seems less obvious over time.

I know how stressful this is, but try to be positive.

I was a tiny and skinny child and had loads of tests including a sweat test for cystic fibrosis. It didn't help that my sister younger by 2 years was taller than me and heavier. The outcome was genetic. My Dad's family are short and fat and my Mother's family tall and thin. Luckily I had the short and thin bits.

I'm just under 5ft but have now in middle age put on weight and I'm just over 9 stone.

I wouldn't worry at this stage if I was you until you have a proper reason for her being tiny.

If I remember correctly I weighed about 2 1/2 stone when I was 10. At 7 years old my Brownie uniform had to be taken in for it to fit me and it never needed to be let out during the 3 years I was there. My Mother had to ask the Headmaster before I started comprehensive school if I could wear a different colour blue coat to the regulation navy because she couldn't find any to fit me.

Some people are just small, bumblebee. My mum was - 4'11" (all her family were little), and my dad was only 5'5". I am 5'5" which is average for a female but when I was young, I was considered to be quite tall.

I remember seeing an interview with Ronnie Corbett who had been taken to doctors because he was so little. The doctors told his parents there was nothing wrong with him, he was just small and that was the truth.

This must be very worrying for you and I do sympathise but the endocrinologist will do tests to exclude things, like Turner Syndrome. (Jeanette of the Crankies has Turner's btw.)

Please do come back and tell us how she gets on.

I know how you feel and how scary genetics tests are. My dd was also always small - we had no other children so didn’t realise but looking back on photos she looks 6 months old at her 1st birthday and her nct friends look huge! I always reminded myself that a genetic condition wouldn’t change who my dd was (and we never found out what she had before she died). If she does test positive for condition I recommend you join any fb groups etc you can to connect with other parents, I did this (for another non genetic health issue) and it helped hugely.

Turners Syndrome

Leri Weill dyschondrosteosis

Langer mesomelic dysplasia

These are all genetic and can result in shorter stature and other problems in regards to growth.

A copy or a deletion of SHOX gene is seen in all three once genetic testing is done.

Turners is the most severe of the three, I would of thought that it might of been visually noticed before now if it was Turners.

dd was tested for turners (negative)is exclusionary - she turned out to have a lower bone age which meant she would go into puberty later & her growth would be over a longer period (she had her first period in her late teens) she grew to just over 5 ft. Has your dc had a bone age scan yet? We are fixated upon children growth patterns being universal & the very much are not! I remember her being under a metre tall at 5 & only size 3 feet & getting her high school uniform was hilarious - she thought so! She just grew up later. Ethnicity has a lot to do with it -dc with Asian background can have a tendency later where as dc who are of African descent maybe more likely to go into puberty earlier - its all to do with growth spurts. Which is the reason that measuring someone age by bones is notoriously inaccurate by the way.

Hi Mumwon
Yes she had a bone age test and that came out at 3 years of age when she was about 3 years 10 months at the time they said she has some catch up to do x

That actually doesn't sound too bad, bumblebee, she was probably the lower limit of 'normal'.