What to expect at initial endocrinology appointment?

[IronHand]

DD (who had various underlying medical conditions) has been referred to endocrin by her paediatric consultant due to significant stalled/tapering off growth, crossing more than two centiles, over a period of more than a year. Referral was sent beginning of May and we have an appointment next week with ‘Endocrinology Nurses’. I just want to be able to prepare DD (who has SEN) for the appointment - I assume they are likely to want bloods, any idea of anything else?

For DS’s initial appointment, first he had his height and weight measured by a nurse, and they also wanted to measure mine and DHs height (to get an estimation of what his height should be).

Then meeting with endocrinology doctor, and discussion of his medical history.

In DSs case as it’s also delayed puberty he had to have an examination to check for signs of puberty (he was not happy about this).

Then he had a blood test - nurse was great and very quick.

He also had an X-Ray of his hand - they use this to determine physical age.

At a the second appointment he also had to give a urine sample, to check for hormones.

I have to say everyone we have dealt with has been so nice and friendly and made him feel relaxed as much as possible.

I hope it goes well for your DD.

Definitely height and weight. Usually checked at every appointment

Thanks @Swoopingswiftthats a very comprehensive summary and really useful, I wouldn’t have considered the possibility of an xray so I will prepare her for that for sure. Will also take in an accurate measurement for my husbands height incase needed.

The hand X-ray was very quick and easy, he found it interesting to see his bones! It indicates ‘skeletal maturity’. In DSs case it showed his skeletal age was 2 years below his actual age.

They may not do all this on the first appointment, I guess it depends what facilities the hospital has.

With the X-Ray I seem to remember he had his hand on a sort of table with the machine above and the staff had to go in a protective room with windows while it was being taken, he could still see them though, so felt safe.

DS has SEN and is often nervous in new situations so completely understand it helps to prepare them.

Yes exactly, I don’t think she will have a problem with the xray - she is generally excellent with her many medical exams - but having a chance to discuss it and prepare really helps. And if they do things differently at our hospital that’s ok, at least we tried!

OP I hope your daughter’s appointment goes well. It must be worrying for you.

Can I ask what initially prompted you to take her to be seen? Was she just very thin?

Hi, we didn’t have an initial appointment as such as my DD was diagnosed while she was admitted to hospital but the appointments always involve being weighed and measured. They will probably ask for height of you and her father as well and measure her back.

She also always has bloods taken and has had scans (most likely xray as for us it’s linked to a tumour so the scans will be different).

Then a discussion with the Endocrine consultant and sometimes her specialist nurse (who is a god send!).

I have always found them to be really lovely and to deal with my DD so thoughtfully.

She has always struggled with weight gain, was under a dietician from birth for years but eventually we managed to get to a point where we could keep the weight gain ‘good enough’. Through all that her height was ok, small for her age but following her (low) centile line. Over the last few years her height has started tapering off, it’s been slow - when you are already on a low centile you aren’t expected to grow more than a couple of cm a year so only growing 1cm is less noticeable - but I’ve been aware of it for years. She sees various consultants anyway due to medical stuff and they always weigh/measure her and this year the paediatric consultant agreed it had reached a point of concern. Endocrinology might assess her and say she is fine/doesnt reach their threshold I guess but I don’t think so.

Sounds like a scary time - hope your DD is well now xx

She’s doing well now thank you x

If in junior school or older it's definitely worth briefing the child that the appointment is likely to include questions about / examination of private parts and talking through any worries they have, ensuring they feel safe doing it on the day.

Yes depending on their age but they may ask questions like do you have any underarm hair, BO etc and any other signs of puberty. So good to prep your child and reassure them the nurse is asking for good reason and not to be embarrassed.