Growth hormone? Any experience?

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My dd was born at 29 weeks. She has always been very very small. Every test under the sun to find a reason for this. Various investigations and genetic tests. All came back clear.

The drs want her to start growth hormone injections. I know my dd would love to be taller and she gets frustrated and upset at being smaller than her peers, especially now at school.

Has anyone any experience? I'm a type 1 diabetic, so not concerned about administrating the injections, but it seems different somehow. Like it's a choice rather than a necessity. I'd give anything not to have to deal with my insulin! She is terrified of injections now after many many blood tests over the years.

Are there any side effects?

Many thanks in advance

Hi, yes my son is on GH - it's honestly the easiest thing. He was giving himself the injections for a while, then became sheepish, so I'm doing them for him. Suggest if you're on Facebook that you look up the child growth foundation's group page. A lot of parents there with kids on GH for various reasons. In terms of the fear of injections, using a pen device which hides the needle may be the way to go. It's still a needle... but less confronting. The needle is very fine, and not at all the same as the needle used for a blood test for instance.
If your daughter's doctor recommends this, I would go for it. She may be afraid of injections now, but she won't thank you when she's older if she's shorter than her peers/than she should be. How old is your girl? There's a window of opportunity before puberty that you don't want to miss.

Thank you, swan,
She is almost 5. I know the pens and needles you mean. They are v similar to the insulin pens.
I think her dad and I have decided to give it ago. I'm just concerned it's a big deal when actually she is perfectly healthy. Just tiny! I think I wasn't expecting it tbh. We were told last appt it was very unlikely but she hasn't had a very good 6 months in terms of growth.

Are there lots of appointments? We live over an hour away from the hospital too. And are there any known side effects? Someone asked me if it causes excess hair growth? Poor little mite is v hairy anyway (takes after me). I was a bit too stunned at appt to ask any questions.

I will have a look for the FB group

She's very young still, that's great. Our son was 4 when he started. Thank goodness she is perfectly healthy - that's wonderful. If she is GH deficient then it's really important for general health & not just to grow taller. GH impacts bone health, heart health, muscle, energy & other things. I don't think you'll find the monitoring or ongoing testing much to deal with. Probably at most 6 monthly or even yearly bloods and a yearly bone age scan (hand x-ray). But ask your doctor of course. We are dealing with multiple issues, but even now, we're down to 6 monthly appointments. The dosage would be adjusted after bloods are taken. The bigger she gets, her dose would likely increase, but they don't increase dosage that frequently. Good luck with it all. It's daunting but you'll adjust & when you see her growing you'll be amazed.

Thank you, Swan. You've been very helpful. Glad the GH has been successful for your ds. I've heard it's not always successful?

I think there's a very rare condition where kids can be GH resistant. But very rare...
GH helps kids who are GH deficient & then it will only help you reach them reach their growth potential. Is your little girl GH deficient & if so have the drs determined the cause? My son had a pituitary tumour, so his pituitary gland doesn't produce growth hormone.

I'm sorry to hear about your son's problems too. It's good to hear that he's managing fine with it all though. Did his growth jump up the growth charts?
I will ask. But I thought they had decided that she want deficient.?! It's all a bit confusing.
She has had so many tests and investigations. She's been in so many clinics and been discharged from all but this one.

It's definitely a major question I need to ask. Thank you.

Hi

Sorry you’re going through this, it can be a daunting time.
My daughter is 9. She has been on GH injections for just over a year and looks completely different. She has gone from a little girl, who quite frankly looked really poorly (very short and swollen due to steroids), to a little girl who looks well. Her growth jumped up the centiles in the first 6 months but is slowing down now. But this is normal apparently.
She has adrenal insufficiency and growth hormone insufficiency.
We had no choice but for her to go onto injections, it wasn’t even a question. But I’m
Glad she has as she seems brighter. She has less muscle pains and is growing. She was chuffed to be able to get new bigger clothes and shoes as she was literally in the same age group of clothing for ages!!
I personally don’t think you’ll look back. The only side effects we were aware of were headaches in the initial weeks. We were warned this might happen and that if it does, the dose might need to be reduced and then increased slowly. She did get these headaches but we persevered with calpol and didn’t need to take that backward step.
To see her face when she’s measured at clinic is so thrilling. Good luck and please keep in touch

Thanks, Woosey

I'm a bit confused by the fact I think I want told she isn't sufficient in growth hormone. But there has been so many tests over the last 5 years, I can't be certain.

It's good to hear positive stories though. I agree my dd looks tiny and fragile and I know she wants to be bigger.

Why don’t you give your consultant an email or call and just ask to go over the reasons for growth hormones prior to commencing. That way it will iron out any confusions you have. It really is all confusing. My daughter has been through so so many tests and procedures, it’s horrid and so hard to get your head around.
I’d deffo give your consultant a call
Good luck

Thanks

Hi OP, like BlackSwan, I'd recommend the Child Growth Foundation facebook page - it's a closed group but you can ask to join.

You'll get loads of help there, from which device is good for which reasons, tips on helping needle-phobics etc

My son has been on GHT for just over a year. He had no side effects (other than growth!). His hair bizarrely always grew really fast anyway. No headaches.

Kids with my son's condition don't test low for Growth Hormone but it is known that they respond very well to GHT nevertheless - as he has. The docs admit they don't quite understand this yet.

We have an appointment once every 6 months by the way, and bloods and bone-age done once a year. (Bone-age is painless Xray of hand)