So worried- ds2 being referred to endocrine clinic

[Honneybunny]

Hi , I am just looking for some support i guess. Have just come back from a visit to gp with ds2 (16.5mo). Have been in and out of the health centre with him since december, as we were getting quite worried about his growth, and have seen 3 gp-s before ending up with the "specialist" at the health centre today. Ds2 is expected to be on 98th centile for height and is just about on the 9th instead. For months I have been trying to get everyone's attention and now he's being referred. I guess I am both relieved and worried at the same time...
Was just wondering if there's anyone on here with experience. Right now I am just fighting the urge to search the internet for things that could be the explanation... GP is very worried. On top of this all, dh is away atm, so I'm just sitting here not knowing what to do really...
Someone out there got some kind words/reassurance?

No words of reassurance I am afraid, but I did not want this to go unnoticed.

I hope all works out well. I know it is tempting, but resist the urge to google.

Did the GP give any indication as to what he suspected?

When can you see the specialist, I hope the wait is not too long.

I am sure someone more knowledgeable and useful will be along soon, but in the meantime this will get a little bump.

You're doing all the right things. You've got the referral so sorting out whatever is going on can only be a good thing. I won't tell you not to worry because it wouldn't be natural if you didn't, but try to keep at the front of your thoughts that you'll get an answer to your concerns and treatment if that's what's needed. Good luck x

Thank you so much for your messages (and bumping this at the same time, )!

I had a long phonecall with my mum this afternoon, which resulted in me sobbing down the phone, but I am feeling much relieved now... I think all we can do now is wait for the appt and then bloodtests+results.

As to the reason for ds's growth problems: she was asking me a lot about my thyroid problem (am hypo) but as ds2 was tested at10 wks (?) and results were fine, and though there does seem to be a genetic component at least to my hypothyroidism as mum, brother and several aunts+uncles (mum's brothers and sisters) have it, no one was diagnosed until at least adolescence, so the gp thought it was not likely to be that.

She mentioned growth hormone deficiency, which i really hope is not going to be the case... Anyway, am still desperately not to google here, as i know that that would only make me worry (unnecessarily).

Chin up hun, I hope you get the answers you need!

Where are you situated. DS1 sees a paediatric endocrinologist at Kings in London - has done since he was 1, he is now nearly 10. Just to put it in perspective DS1 was way below the 0.4 centile and I am talking 20 centimetres below it. He has been subsequently treated with growth hormone - but is not and has never been deficient in it.

Why is your DS expected to be on the 98th centile? Has he fallen off the 98th centile in a short space of time down to the 9th or has he always been plugging away on the 9th?

hi again, we are in cambridge, uptomyeyes.

both dh and i are tall, and our ds1 is on 91st. according to this calculation with mid-parental height etc, ds2's centile should be the 98th, but at least above the 75th. i realise that this is just statistics, and that genetically it is probably not as simple as that, as eg also height of grandparents will have effect etc. i guess also children can stop for a while and then have increased growth again. so, if he would be slightly below 75th, i wouldn't be so worried, but he's actually under the 9th (more or less on the 4th centile), and this is at least a bit unexpected and worth checking out.

what bothers me a lot is the fact that i have mentioned his growth or lack of it many many times, since december last year. and it is only now, that they realise something maybe up.

he was born a reasonable 8 pounds, and was quite tall, and for the first 6 months was probably growing normally, but in hindsight by 8 months he was possibly already tailing off. the thing is that here they don't measure height, so there is no way of telling exactly what happened, until december, when we started plotting it at home (which i was actually told off about by gp....)

sorry to ramble on... how is your ds doing? is his growth now more normal, now that he's receiving treatment? are you both tall as well?

Hi

I'm 5 7 and DH 5 11. So neither of us are short - not sure what centile though!

DS 1 is on 2nd centile after 2 yrs growth hormone treatment, having started as I said before way off the graph Ds2 is on 9th centile (50th at birth), DS3 is on 50th Centile (2nd at birth) So as you can see a real mixed bag. Parental height is only one of many things that affect the potential height of a child.

DS1 went through a battery of tests at the age of about 18 months - hormone, enzyme, genetic and neuro. Everything came up negative. It was decided that he was just designed to be a smaller person - some mix of our gene pool or throw back to an ancestor somewhere.

Whilst his GH levels were always appropriate for his size there is some evidence to show that giving GH injections could give small children added centimetres and also makes them grow faster. So it was decided that at age 6 he would be put on daily injections.After 2 years of rapid growth we took him off GH because he was developing an extremely rare complication to the drug. If this hadn't happened he could have stayed on GH until he was an adult.

I can't really reassure you about your DS except to say that to be on the 4th centile means that you are within an entirely normal height/weight range. I would give my eye teeth for DS1 to stay on the 2nd centile because it means he looks the same as his peers and to be honest that is really important for kids.

If you need any more help on the GH front give me a shout, but I bet your DS is fine just a little slight and theres nothing wrong with that. (It means he'll never have to play front row for the English rugby team!!)