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Growth Hormone Deficiency?

(3 Posts)
DozeyRose Fri 26-Oct-12 14:18:04

Hi,
My youngest DS received his blood results back as there were concerns about his growth. It appears he had a low count of growth hormone.

He is three years old and weighs 12 kilos and is only 90 cm in height. His eldest siblings were always on the higher end of the centile chart!

My GP has referred him to see a specialist in this field, to explain in depth and give us our options. This could take up to a month though.

Essentially, I'm not 'worried', but am a little anxious as I know very little about this. I have done a some research online, but until I speak to the specialist, I don't know how severe it is and what our options are. I'm not liking the possible thought that he will have to be injected with hormones on a regular basis :-(

Has anyone had experience with this? And what are the setbacks if you chose not to inject them with hormones?

Other than the fact that he has hyper mobility, he is, generally, a healthy young toddler.

Thanks in advance

Pyrrah Sat 27-Oct-12 01:38:21

My daughter is currently seeing paediatric endocrinologists.

She is 3 years 6 months, weight 12.5 kilos and is 92cm (having grown A LOT over the summer). She's on the 7th centile whereas she was 90th at birth and should be 97th for genetic potential (I'm 5ft 9 and DH is 6ft - I am the smallest by a very long way in my family, both my sisters are over 6ft).

When we had the first set of tests, she had her karyotype done to check for Turners (came back negative), her wrists x-rayed (8 month delay so far and likely to increase) and her growth hormone markers.

She has undetectable levels of IGF1 and very low levels of IGFBP3.

However, at the next appointment she had hit her growth velocity target so for now measuring was suggested.

I had been seeing an endo at the Portland as DD has BUPA, but they won't cover for GHD or monitoring. My GP felt she needed to be measured in a proper clinic so we were referred to Barts.

DD threw a total tantrum and refused to be measured at all, so I'm hoping she'll cooperate next time. In the meantime they order a load of blood-tests: full blood count, thyroid functions including autoimmune factors (she had a raised TSH last time), full bone profile and a repeat of the IGF1.

If she doesn't hit the velocity and depending on the test results, then the next step is usually a day in hospital having growth hormone provocation tests and often a head MRI to check for craniopharingioma - a benign cranial tumour.

Growth hormone is hideously expensive - around £20k a year I believe - so to get it you have to jump through mega-hoops. I believe you have to fail 2 provocation tests for starters.

One of the reasons I asked for the referral to Barts is that they are leader in IGF1 deficiency that can occur without growth hormone deficiency. Since DD has the undetectable levels I thought it seemed sensible.

If DD needs the growth hormone, I will definitely 100% go for it. Although the injections are not fun having to have every day for decades, growth hormone affects much more than height - it affects muscles, bones and all sorts of things. I would also want to give DD the best chance of achieving her genetic height potential. I would feel even more strongly about that for a boy.

Feel free to ask any questions - I must have read everything I could get my hands on and asked a gazillion questions at the appointments.

Some of the things they will want to know are parental heights, his birth weight and initial growth pattern, the ages you and your DP went through puberty and anything odd about his birth.

Other than being small - but perfectly proportioned, DD is also very healthy and positively hyperactive. We are hoping that she has Constitutional Growth Delay - I, my mother and my MIL were 17 before menarche which is much later than the norm. We all had late growth spurts and stopped growing in our 20's, I have around 3 years delay in bone age. CGD is very hereditrary - around 90% IIRC - so I will be thrilled if it is that and nothing else.

One thing that they can do these days is bring puberty forward in line with the peer group if it is causing psychological stress for a child. If DD had CGD we will certainly consider that if necessary.

Sorry, have written a book here! Don't panic and don't feel you will have to make quick decisions. Good luck!

Btw, the Child Growth Foundation has some useful resources, they also have a forum but it is very slow and maybe only a couple of people visit it a week.

midseasonsale Sat 27-Oct-12 20:10:39

Gosh my little one is on the bottom percentile for height and growth but I've never thought anything of it. DH is 5-8, I'm 5-5, FIL is 5-4, my mum is 5-1, SIL is 5-1, other relatives are mostly about average height. Other then being small, my child is healthy, bright and active. My other two are bigger and on the 9th percentile.

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