Growth Hormone Provocation Test

[littleoctonauts]

Has anyone else had to have this done for their child? Our consultant wants to have this test done for 4yo DD who is currently below all centile lines for height. I'm concerned it's quite a distressing test to go through and I'm not sure how much benefit there would be in doing it. DD is petite but part of me thinks, is that such a big problem (pardon the pun) ?

Thanks

Bump

It is a stressful test and I think (I may be out of date and am NOT medical) can be dangerous for some children eg SGA children who don't control their blood sugar well.

Also you can be prescribed growth hormone without having a stim test if you meet certain criteria. Was your child born small?

It might be worth you phoning the Child Growth Foundation's helpline if you want to chat to someone about it. They are very friendly and helpful. There is also a facebook group you can ask to join.

website here: www.childgrowthfoundation.org

Yes, my eldest son had this test done at the age of three. Were there any particular questions you wanted to ask?

Mine has - I think it's important to look into. If your child is GH deficient, then it's important to find out (for the sake of then being treated) but also because it's important to find out the cause. In my son's case it was a pituitary tumour (v rare).

Thanks for your replies. I really appreciate it.

Regarding the questions I had, I was wondering what to expect as I've read the online patient information on the GOSH website but there's nothing like hearing it from another parents perspective. It sounds very invasive. Is there anything you did that helped make it easier?

I was also wanting to hear if you did the test did your children have other symptoms too? Dds only symptom is being small in height. She is not observably ill nor does she have any tangible symptoms of being ill.

My DD was born small, she was small during pregnancy too and has always been small. It was a traumatic birth as well in which they didn't believe I was in labour and she ended up being born literally falling to the hospital floor and the cord snapped. No immediate damage found but obviously its something in our mind.

I was reluctant to do the test but now I read that GHD can lead to problems with puberty and I don't want any thing avoidable to cause long term damage.

I will look up the group, thanks for the link

Honestly the test wasn't hard for our son - I think it varies from patient to patient. There are many causes for growth problems, so please don't prejudge it but it's so important to get to the bottom of it. GH affects things like heart function - it's not just height.

It was very difficult for my son, but that was a mix of his veins being difficult to find without them breaking at that age/size, failed sedation and errors on the part of the hospital. They managed to half complete the test after two tries but that was enough to confirm growth hormone deficiency. The test was invasive but it was important for us to confirm the diagnosis and begin treatment.

I did consider not doing it and thinking that he’d just be small, but I’m very glad I didn’t. His weight and length at birth were fairly large and he was below the lines by twelve months old. He has been receiving treatment since the age of four and is still noticeably smaller than his peers, though now within the lines of the chart. If he hadn’t received treatment, we would have been setting him up for reaching four foot something as an adult.

As I have understood it, it’s not just height which is affected because what it really means is that he can’t create new cells as quickly as other people. This means less muscle, slower recovery times, and an increased risk of heart problems. He may not go through puberty naturally. One of the things I really noticed was how exhausted he was after walking or a day at nursery compared to other children his age. He would often cry and need to be carried around. I thought he was being a bit lazy but it turned out that he just couldn’t keep up because he wasn’t as developed as he should have been.

DS (also born SGA and failing to catch up, but with no other symptoms) was tested 8 years ago. From what I can remember it was not pleasant but it was just one day and very worthwhile as it lead to him being prescribed GH which has worked wonders for him physically and for his self-confidence. I took the day off work and arranged childcare for my younger child so I could be there to support. Best of luck!

Definitely contact the CGF, they are amazingly helpful and the people who answer the phones have personal experience of what you are going through. Their website and Facebook group is also very helpful x

Thanks all I really appreciate your support and your responses. I didn't know about the collection of other implications of GHD so that is really good to know. It sounds like we really should do it. I'm nervous though because DD just wants to eat as soon as she wakes up and also she screamed through the genetic blood test for Turners syndrome (which came back clear thankfully).

Is it the glucagon test? My son had multiple fasting tests up to 18 hours which have been tough but he copes much better than expected.

littleoctonauts if your daughter was born small were you told she was SGA (Small for Gestational Age) or IUGR (Intra-Uterine Growth Restricted)? These children can often have slow or no 'catch-up' growth, and a subset of them can have a syndrome called Russell Silver Syndrome. It's these children for whom the stim test can be dangerous.

The doctors of course should know this and maybe things have got better but a good few years ago, some of them definitely didn't understand the risks with low blood sugar and these children.

(SGA/IUGR/RSS are also eligible for Growth Hormone Treatment under the SGA licence and do not always show up as Growth Hormone deficient, though GH improves their growth/final height in a large number of cases.)

Please do contact the CGF. They are really great and will help you steer your course.

Of course it could also be GHD or another condition entirely, or she may start to catch up eventually, but it is good she is being investigated.

Good luck with everything.

My daughter had the test age 2. She stopped growing when treated with high dose steroids as a baby and then developed adrenal insufficiency. She had normal GH response and we were then told that NICE guidelines were if she was still off the charts at 4 GH supplementation would be considered again. As it happens her growth velocity has improved and she is scraping the bottom of the charts at 4yrs old. I don't remember the test being particularly stressful - she needed an intravenous catheter but then it was just boring being in hospital for the day. She had a 1-2-1 nurse all day to keep checking her blood sugars but she coped fine. Good luck.

Thanks everyone. I contacted the CGF and the lady was really helpful. She reassured me about the test eg by letting me know that there is a 121 nurse with you. She also said to look up RSS which I did but I don't know if DD has those symptoms. DD does actually follow a decent growth path, the same distance below the 0.4th centile pretty much. In the last 10 months she grew 5cm which the consultant said was good. We've never had any diagnosis for her, I remember in pregnancy being told she was smaller than they expected for my gestation and I had a couple of growth scans but I don't remember them saying this was a condition as such. Is there anything I should mention about this to GOSH? The endocrine consultant is aware of this history.

Also I should say that DD is DD3, and her two older siblings were low on the charts but always within the lines. DD2 is still petite in her class but she's always been between 2nd and 9th. DS1 caught up and is average height now.

We going to proceed with the test, just waiting for the letter now. No idea how long to wait for that. I just want it over and done with now. I really appreciate all your help everyone as I feel better now knowing that the test is needed for good reasons and that hopefully all will be OK. It's also really nice to be in touch with others who have been through similar.

Hi both my sons have had it (3 and 8). It's not the most pleasant of tests but we thought it would be so much worst than it actually was. Bring gifts it helps. It's worth it as it rules out if the child is growth hormone deficient.

Oh I forgot to say if you in the UK the child's growth foundation is really great. Good luck

If you child need it, it’s not really up to you to decide without sounding horrible. It’s not just about height.. my son has had it and yes it was awful for him and yes, he wanted to eat but I’m sorry this is what needs to happen. I know you said you are nervous because she wants to eat as soon as she wakes up but children in Africa don’t get to eat for four days sometimes I’m sure she will be fine.