Short stature / growth hormone deficiency? Looking for advice on a specialist

[Ippagoggy]

Our 3.5 year old son is really small and worryingly seems to have fallen off his growth chart. He started on the ~ 20th percentile, fell to the 9th (around 1y but we didn’t think too much of it at the time) and now is below the 0.4 percentile. Sadly due to covid and general lack of access to health visitors (and admittedly our own laziness) over this time we have not been very good about plotting his curve so have only 3 data points.

He is now noticeably smaller than all his peers (both girls and boys) at nursery. However when I took this latest height measurement I got really scared. He is a really happy healthy boy otherwise, bright, with good motor skills and of okay weight (9th percentile); just tiny (albeit his limbs, head etc seem in proportion at least to a lay person like me). My husband is 185cm
and I am 158cm. Our daughter has been tracking her growth curve pretty consistently (hanging around the 20th percentile with little deviation).

I’ve booked a GP appointment but it is not for 4 weeks. Does anyone have any suggestions for a private doctor / specialist in London we could speak to? Or how to approach this? Or any similar experiences to share? We are definitely willing to go private or self-pay at this point to understand what is going on as we are all incredibly worried. Any suggestions / recommendations welcome. We are based in London.

I’ve started looking at lists paediatric endocrinologists in London (eg via topdoctors) but I really don’t know what the best way to go about this is — how to choose from one or if this is even the type of doctor I should target? I’ll probably end up ringing a few to see what I can glean from their medical secretaries but any advice would be much appreciated!

be prepared for a dismissive attitude from the gp.

first of all you need to look at/keep a diary of these things

• sleep: how much does dc sleep? are they alert and bouncy when awake?
• exercise: are dc getting 1 hour vigorous exercise a day, preferably outside?
• nutrition: enough from all food groups?
• illness: fevers can slow growths, has dc been particularly sicky?

malnutrition needs to be considered. malnutrition can also be a symptom of certain ansorbtion disorders (coeliacs for example)

all the best!

I was going to say have you considered malnutrition due to coeliacs, for example.
My son was born on 98th centile and just dropped and dropped. Diagnosed coeliacs age 4. He is now 12 and tiny but we were told the growth lost to malnutrition can't be recovered. Since covid he's not had an in-person pediatrician apt but we will do this year so we can discuss if anything can be done to help him.

Anyway, pre diagnosis his only real symptoms were poor growth a distended pot belly but no real body fat. The pediatrician said his belly and flat bottom were consistent with it being coeliacs. He did used to complain for tummy ache after nursery but we always thought he was hungry for his dinner...his speech was very delayed and he has communication difficulties so maybe another child would be able to articulate the discomfort better.

Dr Lee Wadey paediatric endocrinologist at Epsom hospital

What is his actual height OP?

I don't have recommendations but a friend in Ireland has a son who was deficient in growth hormone. He takes medication daily and while smaller than your average 10 year old he's within normal range. Just offering for reassurance

Check for coeliac
Measilure properly and meausure again in few months
Do a food diary
Maybe see a General paediatrician first
Portland hosp

I would suggest Dr Ahmed Massoud - he's a private paediatrician and endocrinologist at the Portland Hospital. We used to see him for our son for general paediatric stuff.

Alternatively call Great Ormond Street Private Patients & ask to see an endocrinologist there. My son is seen there and the team are excellent.

If he's fallen off the centile lines ask your doctor to refer him, no questions.

My son is growth hormone deficient. The process for us, was Dr, who was dismissive but insisted on a referral as he was on the 0.02 centile despite being on the 45th born. We then saw a constant, had blood tests and an xray, followed by an mri scan and then a stim test, which was blood tests over the course of a morning after some insulin as this gives an overall picture.

He now has daily injections of synthetic growth hormone and is slowly catching up, he's now back on the 25th centile.

Be sure of yourself with the dr is my biggest advice.

We see Dr Christina Wei at Evelina for growth reasons. She’s a consultant paediatric endocrinologist. We see her through the NHS.

We actually see her for the opposite reason- excessive height.

As @pinkpixie83 mentioned there should be no question of referring if they are not on the centiles.

We had no trouble to get a referral for through the GP as my DD is not on the centiles. We didn’t even actually do a GP appointment- she just did the referral over the phone based on the information I gave.

We started at the hospital with a hand X-ray for the information this gives about bones and growth, and then have done urine and lots of bloods, dietician, more X-rays, urine again. This has all been managed by the same team.

We are waiting to see if she will need hormone intervention.

Thank you so much for the pointers, contacts and shared stories!

I took the plunge and saw the paediatric endocrinologist who had most immediate availability. That was today with a Dr. Rakesh Amin.

he confirmed that relative to parents’ height and also based on the very few plots we have, my son’s stature is definitely something we should investigate. At 35 months our son is at 89cm tall (below 2 standard deviations).

we are starting off with bloods for now, but he gave us some idea of what might be on the horizon depending on what the results show (bone age via x-ray and the growth hormone stimulation test etc). doctor thinks coeliac disease is unlikely in our case given his weight:height and lack of
digestive issues (perhaps that will be confirmed in the blood work?)

i will also research some the names given here — thank you so much for these — in case for some reason it doesn’t work out with this doctor or we want a second opinion.

Our doctor seems pretty reasonable knowledgeable though — but I don’t feel I have very good tools to assess how “good” he is other than how he speaks to us and makes us feel! But so far it seems like a reasonable start.

by the way — for those who have children or know of children who have had treatment for something like GHD — have you been able to get treatment on the NHS? Or have you had to go private? In the latter case, do your policies (we are on BUPA) cover it? I asked BUPA today and they said they wouldn’t — but this could be specific to our policy type which I get through my work place. Just wondering…

no experience with endocrinology. but dc with a rare(ish) health issue for which we went private as nhs kept fobbing us off.

after we went back to nhs they didn't want to follow the treatment plan (1 off-label medication & physio) and wanted to do the investigation again with all the waiting times that entailed. so we continued private.

I can see you have seen your specialist, but wanted to respond. Yes growth hormone is available on the NHS. You don't say where in the Country you are my knowledge is all London/ South East.

Obviously I didn't start out on a private route, I went straight through the nhs for the growth, but the nhs cover our treatment, from what I understand its expensive.

But we had a private diagnosis for something else and the nhs now fund the medication as the diagnosis and the medication titration plan followed NICE guidelines, so whether the growth would be the same I don't know.

Similar thing happened to my oldest with him dropping off the curve. I was referred quite quickly by the GP to a paediatrician, because i was concerned it was linked to the constant chest infections, and GP agreed. He was 2.5. He was diagnosed with asthma and then put on regular height reviews which continued until this year (he's now 9). The paediatrician did also do a full blood test I think and there were no issues, he reassured me that sometimes kids grow at different rates etc.They did a bone scan when he was six which showed a slightly younger bone age - which means there is growth potential. This year he dropped down to the bottom of the chart, which resulted in a very quick referral for a growth test. This is non trivial. Results suggest there are no systemic issues. He's just short. Most important thing to do is not let your child realise you are worried about it and not let them feel inadequate.

My daughter had growth issues as a toddler (eventually attributed to her epilepsy meds) and was seen very quickly by NHS endocrinologist. We were told the NICE guideline allows growth hormone immediately if it is deficient (hers wasn’t) or at 4 years old for significantly short stature, so if that ends up being recommended you should be able to get it on NHS. Have you looked at the Magic foundation website? It has useful information and support for growth issues.

Yes definitely the NHS funds GH, my son has been on it for almost a decade & growing v well on it. It's good that you're investigating all this at a young age. If he is GH deficient there's plenty of time to catch up. I recommend joining the Child Growth Foundation Group on Facebook as there's a wealth of shared experiences there.

Hi there,

Looking for some guidance. How is your son doing now and what was the outcome of his diagnosis. I'm in a similar situation and really stressed out. My DS (16 months now) was born on the 50th centile for length and then at 6 week dropped to 25th then slowly kept falling and she is under 0.4th currently. We are thinking of going and seeing a private doctor in London and looking for honest feedback from other parents who have been in similar situation and what their outcomes were.

I’ve sent you a PM

My daughter was born on the 25th for length and she stayed there until 1. Some time between 1 and 2 she dropped to the 1st for now height. She has stayed here since then and is now 3.5 and in 18month clothes

I am 5ft2, she is stable on the 1st (measured every 3-4months) and her weight is stable on the 25th percentile. For these reasons her paediatrician is happy with her height at the moment but is keeping it under review. She has a lot of food allergies, doesn't eat a lot and had toddler diarrhoea so there are lots of factors that could also contribute to her stature. She has had a test for coeliacs

For some children being a low percentile child is normal, I was only ever on the 2nd myself but the fact they are below the 0.4th and still dropping I don't think you would be out of line to keep pushing for investigations to determine if it's normal for your child to be a low percentile child.
As children me and my two sisters were all different heights. At 7 I was the same size as my 3yo sister and my eldest sister was below the 0.4th percentile until 2. There is now just 2 inches between us, we are all slim builds and can often share clothes as we are approximately the same dress size!

It's reassuring to hear that, @Superscientist. Although both my partner and I are relatively on the shorter side, I'm still within the 9th percentile. However, I have two primary concerns:

1. If my child falls within the 0.4 percentile, her adult height may be around 145 cm, or 4 feet 10 inches at most. This might result in a significant height difference between her and her peers.

1. I'm also worried about the possibility of her being diagnosed with a condition like Turner syndrome or facing growth hormone-related issues.

My child is sensitive and becomes easily traumatized, even during routine doctor visits. It's difficult for her to cope with these challenges at such a young age.

My daughter is about to start school at 4 and a few weeks and will be aged 2 clothes and 10-16 cm smaller than the average 4-5 year old! She predicted to be 4ft10-11 too. I understand your concerns completely! Her dad was the smallest in the class until puberty now is 5ft11-6ft so I'm hoping that she takes after him!

Thankfully she's ok at the hospital. It's nervous to know what's normal and what you should be pushing for more investigations. For us it is picking battles and working on her reflux and allergies and worrying about them as they could be impacting her growth.

What sort of tests and monitoring are you having?

@Superscientist - I'm trying to see if I can use my workplace insurance to get her diagnosis privately. For now GP has ruled out colic and feeding issues as she is doing fine weight wise. We don't know if it's endocrine or genetic issue and I guess we will only find that out once they do the blood work

hello! i am in a similar situation with my toddler and wondering what the outcome of this was? found the thread through a search.

Hi there did you ever get an answer? Can you PM me? We’re at the start of all this and I’m worried sick