Any GPs who can advise me on referring for growth issues?

[ManicMinor]

Our GP has referred ds2 (who is 3.5) because of my concerns over his growth, but to a GP who specialises in paediatrics and runs a clinic locally rather than a paediatrician. I've spoken to a couple of other parents locally who have seen him, and they have found him to be a bit obstructive about referring onwards - which is what I will need if we're going to get any tests for ds2.

I'm wondering if there any recommendations for GPs on when to refer to a paediatrician / endocrinologist for growth issues that I can possibly draw his attention to if he's reluctant? For information, ds2's corrected mid parental height is 187cm (we are a universally tall family) and he is currently on 9th centile for height - which puts him at 168cm projected final height. Weight is between 2nd and 9th, but that's less out of kilter with family norms, we're a tall skinny lot.

I have no idea about how you'd get referred but I just wondered how tall he actually is and if its because you are a tall family that you are concerned?

Ive got a small 3.2 year old DS so I understand a little of how frustrating it is.

Hi ihearttc, he's about 93cm, which is small but not tiny, but yes it's the contrast with the rest of the family that is my main concern. Plus I have distant family history of pituitary dwarfism which I'm fairly sure is too far back to be relevant (3 generations) but is still a nagging doubt in my mind.

Thats exactly how tall my DS is...My older son is rather tall for his age (he is 8 and 143 cm) but takes after my husband as he is tall whereas I am tiny at only 4ft 10 so I assume my littlest one takes after me.

Really hope you get some answers...only reason I am not concerned is because my side of the family are all short so totally understand why you want to investigate it.

Watching with interest here. Ds1 is quite a lot smaller than the parental height thing but there are shorter men on my side of the family. I find it hard not to worry a bit about him being teased when he's older but it doesn't bother him in the slightest.

If you go through the NHS, you will be lucky to get the doctors to seriously consider his height as a problem.

We have had constant concerns about my ds for years ever since he was 3 years old. We took him to a different doctor again when he was 6, who was really nice and referred us to the local hospital as his weight was a concern as well. Well below the height and weight expected. Hospital wouldn't do anything for 3 years. Wanted to wait and see what height he was before 10 (puberty) We are expecting a letter any week now as it is 3 years this month.

We aren't expecting much help from the hospital. He is now 9 years old with a height of a 6 year old. My little girl is getting bigger than he is now. !!! Weight is poor on him - so will highlight this with the doctor when we eventually get an appointment.

If you want to go through the NHS then you will have to persuade one of your doctors in your clinic that there are real concerns with the height for them to refer you to the NHS hospital.

Good luck!

Thank you - from what I've read, I don't think any of the more serious causes of short stature applies to ds2 - development apart from gross motor skills is fine. I think the most likely scenario is constitutional growth delay, but I'd like to get a bone scan to confirm that (can show the 'age' of his bones, and would mean delayed puberty but likely to ultimately reach his genetically expected height). But with family history, I would like to rule out growth hormone deficiency, and maybe coeliacs / gluten sensitivity, which I understand can also impact growth.

There are just no short people in my and DH's family tree - with the exception of my great grandfather and great uncle who had the pituitary issue, I have old photos of them to show their heights (next to my 6ft 4 Grandfather!) it in case it should be relevant.

If you can afford to go private you could try Dr Stanhope (easily found on google - think he works out of GOSH). On the Child Growth Foundation facebook page a lot of parents have been to see him (not horrifically expensive) after spending years being frustrated elsewhere. A GP cannot help you rule out growth hormone disorders etc you need an endocrinologist. I'd suggest you join the fb page and ask for recommendations there - it is a super supportive group.

I second Dr Stanhope and CGF page.

He has now retired from GOSH but works at the Portland in London.

Also, for info, there are some conditions where in early childhood, the children have delayed bone age, but it then speeds up and advances over actual age, and these (short) children can then have early puberty and a reduced growing time if left untreated. Sorry, I don't want to worry you, just don't want you to get possibly false reassurance from a bone-age scan. (I am not medical, just a parent of an affected child)

LatinForTelly, i've also been warned DD is at risk of early puberty. OP hope you can get some answers.

Thanks so much for the suggestions - I will have a proper look at the CGF page and bear Dr Stanhope in mind, depending on the outcome of our appointment next week. It's so hard to know if I'm making something out of nothing.

I know this is an old thread but I wanted to check you did get the bone age checked. It's so critical in assessing growth potential. If it's advanced, the child will lose height potential and if it's delayed, he should grow taller later.
When bone age is advanced, growth can appear the follow an appropriate/low percentile and be reassuring, but growth can then stop much sooner than expected so the child ends up very short.
You still have plenty of time on your side, but please don't accept reassurances without a bone age assessment from a paediatric radiologist. It can make all the difference. I found that out too late sadly.

We had this issue with DD who like DH was very tall from birth - 7/8 good head height taller than her peers & then she just stopped growing. Despite having the school nurses backing as regards change of height & the GP listening & referring her onto our local hospital, the paediatrician refused point blank to take it seriously as she was still just scraping the lower end of the centile chart thing. She had previously been top end & above, but that still didn't get them to listen & do anything, even a second opinion didn't help.

Roll forward a few years, DD now always shortest in class & other health problems finally point to Pernicious Anaemia, even that took a battle to be heard/for treatment.

She had a 2 week loading dose of B12 injections with co factors a few months ago & apart from the miraculous affect on her health. She grew 4 inches in as many week & suddenly puberty was on fast forward, going from barely an AA bra cup, to a C in a few weeks.

You say you are all tall/slim - possible asymptomatic Marfans Habitués?? - this is is DH, & its a form of EDS/Hypermobility. I also have EDS Hypermobility, plus PA in the family & it turns out PA is linked to EDS - its in DHs family too

Maybe something to consider??

If so, ask your GP for blood tests

My advice would

RockinHippy
How did they diagnose EDS. My DD started at 50% but dropped to 0.4th and was finally discharged as familial short stature.
Unfortunately she had advanced bone age but we were told it was her actual age, so we all had a shock when she stopped growing without making adult stature. Two years advanced in the end...

As she maintained her growth curve and slightly went above it, I just thought the clinicians were right. If only I could go back...I'm so glad you've managed to get help for your DD. I can't tell you how bad it feels knowing I didn't get the right help for my DD. A mothers guilt is very cruel.

As they can't do anything for her height now, they immediately discharged her, but I'm so worried there is something wrong. DD is mental health issues over not reaching adult stature and witnessing all her friends growing and growing while she stays the same, which makes it harder.

sorry to hijack the thread.

Excuse if I miss anything as I'm on my phone

EDS diagnosis depends on the type of EDS as there are a few - your tall thin stature could suggest Marfans, though as your DD is small the medics probably wouldn't take that seriously for her, but would for you & you could take it from there.

Hypermobile type of EDS, which DD & I have is diagnosed with a bendiness test called "The Beighton Score" you will find diagrams if you google. This is done by a rheumatologist

All other types are diagnosed with specialist blood tests via a geneticist - though I think that also starts with a rheumatologist

Can I ask how old your DD is?? She sounds under 21 & if so she may well not have stopped growing yet. I was tiny up until 16, by 18 I was 5'0" - by 21 I was 5'5"

I do think it is the B12 deficiency that slowed growth for us though - DD has grown so quickly since starting her B12 injections. B12 isn't a standard blood test & is frequently missed due to the tests, especially the NHS first line Serum B12 test as it measures all B12 on the blood, not just what the body can use. None of the tests are fool proof & doctors too often don't know

& it's the medics not you that should feel guilty X

I should have said - there is a cross over of bendiness & degrees of stretchy skin with all types of EDS, but its easy yo think you are just normal, because it is hereditary, you grow up around people who are the same as you, so unless its extreme, you don't notice

THISWEBSITE has a lot of useful info as regards B12 deficiency - there is a great facebook support group linked on the useful links page - "Pat Kormics" one

Delayed growth & weight gain is listed as a symptom in kids, but bare in mind that not all symptoms need to be present as it affects people in different ways.

There are things that deplete B12 further too, so symptoms can increase over time - this happened with DD & me to to a lesser extent. Looking back I can see a clear timeline of things that I now know deplete B12, such as nitrous oxide for tooth extraction, or certain antibiotics for chest infections, Ibuprofen use for multiple sprains etc etc, so with hindsight it now makes sense, but without learning about B12 deficiency, it was impossible to join the dots as it is so complicated

Is he growing on his line ?
Or dropping centiles?
Monitor carefully but if he is following the centile and healthy then you will be hard pushed to get referral. .you could maybe ask for private bone age scan but why worry ds if he is just following his own line?
Dd dropped centiles to below the line...diagnosed coeliac in the end.

My daughter had loads of amoxicillin when bronchiolitis was wrongly diagnosed as recurrent chest infections aged 8 months to a year. At that time she went from 50th centile to 2nd and then later the 0.4th. I do wonder if that could have depleted her b12. If I'd gone private with my daughter aged 7, they would have picked up the advanced bone age, which the NHS ignored. That would have put her on the road to treatment to enhance her height to normal adult stature. I'd say, if in doubt, go private. The NHS can't ignore it then.
Following their own line is one thing, but what's at the end of the line? One day they become teenagers and adults and not reaching adult stature has a major psychological impact. They only grow for a little while.