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Growth Hormone

2 replies

Pyrrah · 14/08/2012 13:22

Was wondering if anyone has any experience of children with GHD?

My 3 year-old DD is seeing a paediatric endocrinologist for growth issues. She's 89cm and 12.4kg at 3 years 3 months.

She was born at 75th centile and then dropped steadily down to the 5th where she is now.

I come from a family of giants and at 5ft 10" I am the midget in the family - both my sisters are over 6ft. Her 14 month old cousin is the same height and heavier than her - she looks like a fairy at family events!

DH is 6ft so not small either. The endo said that she should be over the 90th centile for genetic height not under 10th.

She's totally in proportion, slim, very bright, extremely active and requires very little sleep (so hardly hypothyroid). Hit all her milestones early etc so definitely not FTT. She did see a paediatric nutritionist for a while as she had no interest in food other than breast-milk till she was nearly 2, she was given iron supplements but they said she was definitely not malnourished in anyway whatsoever.

I've had a letter from her consultant who says that she clearly has growth delay and probably GHD (which he reckoned was very unlikely when we saw him in the clinic).

I'm seeing him again in a months time which while short is a long time when you are a mother with questions!

If anyone else had been in a similar situation I'd love to know what I can expect in terms of next steps...

Will she need an MRI to rule out craniopharyngioma? Will they want to do the GH provocation tests? How low do levels need to be to be prescribed GH? Is the usual thing to just collect growth data for a year before carrying out more tests or thinking about GH?

You get such a limited amount of time when you see the specialists that I like to go in knowing the right questions to be asking and not having to have the basics explained.

Both my father and FIL are doctors but specialists in eyes and old people diseases aren't much help!

We've had a battery of tests done - main results as follows:

Karyotyping: 46XX (so Turners ruled out)

Thyroid: raised TSH - subclinically hypothyroid but no symptoms. Need to test for autoimmune factors still.

Bone Age: 2.5 at chronological age 3.1

IGF 1 -

OP posts:
Are your children’s vaccines up to date?
Pyrrah · 14/08/2012 13:26

Sorry, that should be IGF-1

OP posts:
Queenmarigold · 28/08/2012 14:06

I don't know much about it but I do know that GH can be given to 'catch up' - so don't worry. It is also not just about growing height, but about replenishing muscles and other cells. It can be done trans-dermally so no injections to worry about, just fit it into the routine.
Keep letting us know how you get on.

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