Growth Hormone Deficiency

[paperclipsarebetterthanstaples]

I've name changed as this will out me to anyone who knows me.

DS is 18 months. He was 6 weeks early and weighed 3lb 11oz. after a worrying time in hospital he's now fine. He's stayed under consultant care for some underlying things but we were hoping that he was going to be declared fine and signed off at his consultant paed appointment last week - he's 18 months.

But - the consultant thinks that he may have a Growth Hormone Deficiency. He's small for his age (still in 6-9 / going into 9-12 month clothes) but more worryingly he's dropped centiles for his height (started under 0.4, got up to just over 2nd and has dropped below 0.4 again)

He's got to have more tests to check whether his pituitory (sp?) gland is working / not / not properly and, if diagnosed then daily injections until his natural growth ends at 18 years ish.

I've read everything I can get my hands on but as you all know - Mr Google an sometimes do more harm than good! It looks like things are more positive (if he is diagnosed - we're still hoping not) because he's so young.

Has anyone got any experience of this? I'd love some real stories (positive or not so about normal growth - I don't want us to kid ourselves about it)

I know that some of you are facing much worse problems with your children and I'm grateful that he's not ill or anything but tbh it's upset us more than we thought it would - life is hard enough without being 'different', especially for teenagers. I also don't relish the thought of having to inject him but I know that's silly and something we'll all get used to if we must.

make sure they check for coeliac as well and run tests for oher conditions that can cause poor growth. ]the 0.4 to 2nd to 0.4 could jsust be difference in how he measured- in cm there isnt much in it at that age.

get the referral to growth clinic, they will measure gowth properly over six months, may do tests straightaway or may wait til the six month review to see if there is growth rate or not.

if pituitary is then yes injections.

My DS is GHD and on daily injections. Seems early to measure height accurately especially the difference between 0.4 and 2 percent. If he is GHD then it will affect far more than just height. I understood that GHD children were typically born at good weight and dropped dramatically off their lines.

Children who were born SGA or prem and don't catch up can also be eligible for GHT but I know less about that but I would have thought they would leave it longer to check on catch up.

Generally anyone other than a paediatric endocrinologist has absolutely no idea about GHD. We spent 8 years being told it was not until we got to Great Ormond Street and an endocrinologist. You need to ask for referral to one if you are concerned.

As you say there are far worse things and there is nothing you can do about it if it is this. There is no option but to treat as it affects health not just height. The injections don't really make them different as they are just done once a day at bedtime. The other issues do but would hopefully be corrected before being a teenager if you are already considering it now.

Thanks so much for the replies :-) sorry - that should have read 'he got up to just over 9th...'

His consultant specialises in the endocrine system. He said something about DS having 'the look of someone with ghd" and that children with it tend to have a rounder, more cute face! And there was me thinking it was my genes ;-)

He also said that if treatment starts before 4 years he's more likely yo reach normal height??

Does your dc mind the injections?? I'm not overly worried about giving them but DH id horrified!

if you have to inject it will be fine.

but get him in for the relevant tests first. tests not nice so get them over and done with - my dd did GH tests (eventually she was diagnosed coeliac) and the tests not nice make them sick.

cestlavielife is right the diagnostic tests are the not nice ones, OP don't worry about the daily ones yet. The testing to get to that point is what you need to get through. My DS had the 4 hour GH stimulation one and then the overnight cortisol.

Cestlavielife - Shame they didn't test your DD for coeliac first - my DS had the biopsy for coeliac before doing the GH test as they thought he was more likely coeliac than GHD - due in part to assumptions on appearance of GHD children!

Red I have blurred it all... She did get coeliac diagnosis but after eighteen months gf still wasn't showing much catch up growth so they did the gh tests... Which were ok. Then slow but steady growth til

She had growth spurt age 12 now is 13 and on track to reach about five foot something.

I might regret this but what do the tests involve?

Fs was poorly when tiny and had every test going (lumbars, hourly heel pricks, daily bloods etc)

I coped with it better than i thought as i knew it was for the best. DH struggled with it all though. My worry is that now DS is older he's going to know they're hurting him...

paperclips at 3 lb 11oz at 34 weeks, was that deemed to be IUGR? If so, that can be an indicator of slightly different growth problems, if they then don't catch up but fall further behind.

Either way, it's good it's being picked up on. I would second seeing a paediatric endocrinologist. My DS (with a growth and metabolic condition) saw a paediatrician 'with an interest in endocrinology' once and he didn't know his arse from his elbow - particularly with regard to DS's rare condition.

I would strongly advise getting in touch with the child growth foundation. They are so helpful about a range of growth conditions. For example if your child does need growth hormone injections at some point, there will be parents on there who have tried several different systems, know the good and bad points, will show you what to look out for etc. The helpline is run by parents of affected children and they are so useful.

The boards used to be quite busy but I think they now have a facebook group so things are quieter on the website. I'm not on facebook but their group is one of the only things making me want to join!

the MAGIC foundation is American so not much of the medical procedural stuff is relevant but I found it very useful as well with regard to information about DS's condition (and some treatment protocols).

I think the growth hormone stimulation test is the one which isn't very pleasant. I think because in the past, children had to not eat, then their blood was tested over a period of time. There were questions about its safety. But things may well have moved on since my DS was a baby. Again, I'm sure the child growth foundation would be able to help you with what the tests entail.

Good luck with everything.

My DS had the GH stim test this year and it hasn't changed much! There will be other tests such as IGF1 and bone age etc before the stim test and my understanding is that only endocrinologists refer you for it and they are not keen to do them as Latin says due to the safety as blood sugars are affected. The child cant eat or drink that day and has cannula put in then blood taken every 30 minutes. Yes CGF is the place to go for advice and support.