HELP! 10yr old and growth hormone injections

[Picklypickles]

My 10yr old was recently diagnosed with mosaic Turner syndrome and has started having Growth Hormone injections. Daughter has said that she wants these injections because she does not like being so much smaller than her peers. We had a nurse come to the house to train us to administer the injection, daughter does not like needles and made quite a fuss but did have the injection, we were able to continue giving her the injections daily for a few weeks by bribing her with chocolate but then this stopped working. She started working herself up into a state, tensing up or batting away the injection pen as we got close. We ordered a penmate to hide the needle and told her she could wait until it arrived before we tried again. It took weeks of phone calls to Nordicare to get the stupid penmate and now we have it and she's still working herself up into such a state that we can't give her the injection.

We have tried bribery, we have tried being patient (this has resulted in us sitting with her for up to an hour at a time every night trying to calm her down, she insists that she really wants the GH but is too scared of the needle. She says she will count down from a number but she wont tell us what number and we sit there, and sit there and she has never yet said "I'm ready". I've tried a tougher approach and said we will not try again and will not order any more GH and she will just have to live with being 4ft 3 for the rest of her life. I've tried holding her arms down so her dad can do the injection but she fights like a wildcat and we can't inject her like that!

I'm at a complete loss now, she's not had any of her injections for 2 months now. I also have a 7yr old with autism and ADHD and I can't play this ridiculous game for up to an hour every night.

Does anyone else have any experience of having a highly strung child who needs daily injections? Any advice?

I don't know whether I should call the nurse who came to show us how to give the injections or just go straight back to my daughters consultant to tell her that we just can't give the injections and ask where to go from here?

I was also told by my nurse that arms and stomach always hurt more than tums and bums.

If it is the pain has she /you tried coughing?

I know it sounds crazy but it really does reduce the pain of injections (I sometimes have steroid injections into my joints).

You could also try a sort of visualisation with her, you start from the end point ie how proud she will feel when she is taller and has completed the injections and she can go shopping and things will fir.

then you work backwards to how good she will feel when it is the last injection and because she has grown it doesn't hurt (more flesh).

You keep working back to her next injection but she needs to visialise herself at the end of the treatment.

Good luck to you and your family OP and to those going through the same or similar.

I’ve just typed a really long reply that then disappeared before I could press post! Argh! If you want to message me I can pass it all on.

Basically loads of tips from having just been through the same thing. My son is autistic.

Can explain about the needle therapy. From private psychologist. We only needed a couple of sessions as it turned out with tasks in between.

Other things that helped in brief

• watched YouTube videos of others having GH and being fine
• personalised the easypod with stickers etc
• son played with easypod (switched off) pretending he was injecting toys
• we took two weeks off when he got stressed so he could just think about it no pressure
• I talk to easypod like it’s a person, say hello to him etc which makes it less of a scary machine

I advise maybe switching to easypod as it’s really great and people say it’s the least uncomfortable. Maybe would help your daughter see it as a different thing?

Also, same routine exactly every night

He presses the button, only ever him

he chooses the room where he has it (a different room from where he initially tried it and got stressed)

He had loads of rewards to get him going again

Now he doesn’t need rewards anymore but has a chuppa chup lolly in his mouth while doing injection

Every time he injects it gets easier for him and two months in now he’s just starting to be brave enough to watch me put needle in or take it out but he still hasn’t looked directly at one of the needles. We put zero pressure on him to do it himself but I am sure he will get to that stage

And he says it’s most comfortable on outer thigh, with legs stretched out straight. He won’t consider stomach or bum. I’ve been told arm is painful

Oh and he doesn’t like the sounds the device makes so he wears his ear defenders to mask it

I self inject biologics now and previously had to do Methotrexate, both with a pen injector and before that, into my stomach with a standard syringe (plus years of injections and blood tests and scans and whatnots as a child long before such things as EMLA) - these are the things that I think make it easier;

1. Into the side of the hip, rather than anywhere soft and squidgy.
2. If you use an alcohol wipe first, that stings like a wasp, particularly if you've done it a bit too quickly to give it a chance to evaporate - so I stick to just being clean (I checked and it was fine to do that).
3. At first (when I was still finding the right site to inject, so was tensing up and getting the sting), it helped to have DP's hand on top so I couldn't instinctively lift off as he was also applying downward pressure. It was better when I had the initial control, but I knew it wasn't going to go wrong with his hand over mine.
4. I made sure that it had come up to room temperature beforehand, about an hour, rather than the ten or twenty minutes suggested.
5. Laying on my side made me relax more - it's harder for a child to wriggle away or kick out when they're facing away from you, but can still see what's happening. Doing a pretend dramatic 'flop' works well, because your body doesn't care that your head knows it's pretend.
6. Doing it as quickly as possible. The longer you spend thinking about it, the worse it gets. My Rheumatologist has a similar approach to intraarticular steroid injections, so as soon as it's brought up, it's straight on the couch and get going.

Something else that might help is to ask her to wiggle her fingers on her other hand whilst it's happening - the movement distracts the brain a lot.

It's not nice, the feeling of being exposed and poked and prodded - especially if you're comfortable in your clothes and then somebody expects you to take them off and stay for extended periods on a cold coach whilst they do stuff to you. Wearing sports type stuff makes it far more pleasant for some reason, as it's easier to remove bits and put them back on again and there's at least some psychological thing of you wearing PE kit(!) that it's normal to need to change out of/remove layers. And I'd far rather be undergoing tests or procedures where I'm wearing shorts/leggings and a t-shirt or vest top than having to strip to my underwear and maybe wear a crappy, scratchy gown.

It sounds like it has been a difficult few months for all of you. If it’s very very time dependent you would probably be best trying to access some desensitisation/cbt therapy specifically around the injection and the quickest way would likely be via a private specialist. I just googled in my area and a clinical psychologist attached to a private hospital came up. Then Discussing with your GP and child development consultant a more holistic approach to help her with all her issues around interventions. I so sympathise with her because at nearly 40 my anxiety around needles and medical interventions is getting worse despite injecting and providing care day in day out! I hope she is able to get the treatment

Hi again OP
I do hope you have a Paediatric endocrine nurse specialist! I am happy for you to pm me - this is my area of work. Please do and I can point you in the right direction of people - Arlene can vouch for me :)

Ps v gd tips above about injection techniques. I don't advocate using a alcowipe first either... and top of thigh area whilst wiggling toes and watching tv is a good call too. Lying down relaxes the thigh muscles rather than sitting up which tenses them a little more x

The first few months are difficult and I really sympathise. This is just my experience, others may feel it's not the right way to go.

I learnt that the worst thing we could do at the very start was negotiate, bargain, wait, discuss, etc. We'd sit there for hours and he would get so upset.

Eventually we just did it as fast as humanly possible, we got the pen and needle ready at bedtime, then before he got his pyjamas on we said right it's time for the gh we'll be super fast and my husband literally had to pin him down and do it in ten seconds (it was horrible and I felt so guilty) but then it was over so quickly and there was no 'working up'. I would give him a big hug and apologise and he'd be fine after one minute. After a few weeks he seemed to calm and accept it and now he's perfectly happy even when it accidentally hurts bless him.

We now have a routine where he chooses the spot on his leg, my husband places his finger there, we count to ten doing deep breaths, then he says 'ready' and we do it.

He was about six when we started so it was easier to pin him down. I felt so bad about it but it really helped and he understands.

It has benefited him so so much.

That Facebook group is really good btw.

I would definitely persevere but I do understand how horrible it is.

Actually thinking back it was probably only ten days of having to do it really fast and hold him down, then he gradually started to calm, most of the time he says he doesn't even feel it.

Hi op I can’t help with turners specifically but my ds has a needle phobia and needs constant blood tests we are under gosh and they arranged play therapy every school holidays once a week and told us to try sewing with him don’t know if this is any help the hospital your under really should help with this.

Thank you so much to you all for all of your lovely, helpful advice. I have now managed to get hold of daughters Consultants secretary and explained what has been going on, she was very helpful and is going to relay the information to the consultant and get back to me soon about where we go from here. She thinks daughter will probably be called into the hospital to attend some kind of play therapy group that is specifically for helping children struggling in the same way with daily injections etc.

I feel better now that the consultant is aware daughter has not been having her injections and that we have a way forward and most importantly, daughter is happy with this too! I had mentioned some of the suggestions from this thread such as numbing with ice or the vibrating ice packs etc but she wasn't keen on any of those ideas sadly.