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Growth hormone deficiency

29 replies

PollyEsterblouse · 27/04/2019 12:59

Hello all: I hope someone here has experience of this sort of thing. My son isn't growing or gaining weight; we can't go private; I suppose I'd like to hear from others whose children were the same and how their children's health was affected in the long term.

My son is 9. Height is 28th centile; weight only 3rd centile. He has his dad's long & skinny body type, but his dad is 6'3" and was a tall child.

He began life as a gigantic baby on the 99th centile for both weight and height; he had slipped to 50th by the start of school, and has recently slipped again to where he is now.

He is impossible to fatten up. He has a good diet: unprocessed meat; eggs; carbs; vegetables; fruit, dairy, etc etc. Barely any junk food or sugar. For the last month I've given him daily protein milkshakes and omelettes; he put on a kilo over Easter, but when I weighed him today I found he'd lost it again.

Our medical insurance won't cover developmental issues. I went private for as much as we could afford: we got as far as a bone-age scan that showed his bone age is a year behind, but we can't afford four figures (!) for blood testing.

I hate bothering the NHS with anything that isn't life-or-death; I feel this is probably too trivial for them, and am assuming he will go untreated. I will try them, of course, but while I wait to see a GP, I'd love to hear from anyone with experience of something similar.

OP posts:
Are your children’s vaccines up to date?
sleepwhenidie · 28/04/2019 19:30

Prior to commencing his treatment DS had to spend half a day in hospital having his growth hormone levels assessed, this was after numerous blood tests over several years under the care of the endocrinologist at GOSH. They also did an MRI brain scan to check pituitary.

BuffyFairy · 28/04/2019 23:23

@mandybeesborough

Are IGF-1 and growth hormone different things on a blood test?

Yes, they are different things. IGF-1 is a hormone which regulates the effect of growth hormone in the body. If it’s too low the body can’t utilise growth hormone properly. A GH test needs to be done over a period of time (I think around 4 hours’. It’s often called a stim test as the body is stimulated to produce growth hormone and then blood samples are taken at regular intervals to see what peak is reached. You can’t get an accurate view from just 1 blood test as it could be a natural low. Production varies throughout the day.

Hope all goes well with the testing and you get answers one way or another.

BuffyFairy · 28/04/2019 23:24

Thank you Polly.

Flossie44 · 29/04/2019 07:41

My daughters got GH deficiency. Diagnosed at 7yrs old. Was born a chubby baby and was always 90th centile for height and weight. Suddenly it stopped and plummeted down the charts. An insulin tolerance test confirmed diagnosis. Then an mri.
She’s been on GH ever since.
I really would advise you to stay within the nhs. As pp have said..if you hop in and out, you’re likely to waste time overall. Plus GH costs are a lot.

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