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

You could ask her to be tested for coeliac disease while having bloods done. I know you said she’s healthy but coeliac disease can be “silent”, so no symptoms. As the villi are flattened people don’t absorb as many nutrients, etc and it can affect growth. Dd grew 3” in a month after cutting out gluten after six years of no growth!

Hi. I work for an endocrine charity.

Please pm me.

My children are SGA. Small for gestational age

My 7 yr old is 110cms. And weighs 17kgs. My 5 yr old is 105cms and weighs 14.9kgs. My eldest was 2lbs at birth. My youngest was 3lbs at 34 weeks

Both me and my husband are tiny. I’m a size 6-8. My husband has a 28 inch waist.

Turners has very very unique looks.

Have they suggest Russel silver syndrome?

So growth hormone is made in the pituitary gland. Genetically there’s a very very high risk that her short statue is down to genetics. If you and your husband etc are short

Here in the U.K. we have very very strict criteria for giving children growth hormone. The same for adults who take growth hormone. Myself included.

My child is the same. Not on the charts on the red books. However BOTH my children are the same. If this is just one child. The. There usually seems a problem.

She’ll have blood tests. Like IGF-1. She should have bone testing. Short statue due to growth hormone problems. Will have older bones. As growth hormone is vital for bone growth.

Don’t worry. We have some amazing specialists in this country.

Professor hindmarsh at great lemons street is one of the WORLDS leading pead endocrine drs.

Hi Jubba
Thanks so much for your reply

Am I right from what you have said that If there was a lack of growth hormone then her bone age would be older? Or have I got that wrong as DD bones results were younger at 3 years

Thanks x

So growth hormone. Among other things. It promotes bone growth. So pretty much all growth hormone related problems. Also cause older hone age. So yes. That’s true

Russel silver. Turners. Dwarfism etc. All have bone problems.

A scan can tell also if the bone is still growing etc. Hormone blood tests can also tell a lot.

Thyroid. Igf-1 cortisol. Acth. Growth hormone (although this is hard. As growth hormone pulsates). So a stim test can be done. Usually an insulin tolerance tests. Which tells them how much growth hormone is in the blood

As I said. The U.K. has incredibly strict guidelines as to when and why they prescribe GH. No mother will tell you it was an easy ride to get it. It’s usually a good year of testing etc.

You need a good dr behind you. In the U.K. we need a dr. It works different in the U.K.

Check out the magic foundation. This is a worldwide charity that helps children with rare growth problems

Also the U.K. pituitary foundation.

a lack of growth hormone then her bone age would be older?

It will make the bone growth younger, so her bone growth, will be behind, what it should be for her age.

My daughter at four and a half had to have school uniform specially made for her. She was the size of a 2 year old. She stayed well under the 0.4th from birth onwards.

The hospital tested for lots of metabolic problems and kept returning to possible Silver-Russel. Her facial features that made BCh repeatedly question for Silver-Russel and cafe au'lait marks turned out to be from polyostotic fibrous dysplasia. That is a whole other story.

By the time she was 12 it had became clear she is just very, very small and right below the very end of the 0.4th section of the growth charts.

I second the suggestion of the Child Growth Foundation and I would like to recommend 'The Little People' charity if primal dwarfism is supected.

Jubba meant Prof Hindmarsh at Great Ormond Street Hospital! Like the idea of a great lemon's street hosp though .
My son is seen at GOSH and is on growth hormone for deficiency caused by a pituitary tumour. There are many different causes for growth problems, you need to take this one step at a time and see where you get to.

In .my dd case she was diagnosed coeliac age four
She barely grew from age one to four

@bumblebee19 hello, I just read this thread and I am waiting for the result of my daughter’s test result of Turner syndrome. My daughter is 4.5 and 93cm. She has undergone all the blood test, growth hormone test and bone scan, all normal. So they decide to do the genetic test. May I ask how the test turns out for your daughter and how is she doing now? Thank you very much for the help

Hey sweetheart, I have been here!! Look up the child growth foundation on Facebook, there is a group full of parents of children with growth conditions - diagnosed and undiagnosed. I have found it so very helpful. Xx