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 don’t have this exact issue as my son, who is 5 and has daily GH injections, has always just accepted it. However, on a few occasions when we have forgotten about it I have injected him whilst he’s asleep and he doesn’t wake up or even flinch, could you try that?
On a separate note there is a growth hormone deficiency group on FB if you’re on there. It might be worth posing your question there as you might get more responses. Good luck, hope you manage to find a way that works.

Sorry you’re going through this - injections are tough! Have you made contact with the UK Turner syndrome society at all? They’re fantastic and I’m sure will have advice. They also have meet-ups and I wonder if meeting others with TS who have been through the injections might be useful? For what it’s worth, I’m also mosaic and have ended up at 5’2 after Growth hormone, after a projected height of 4 foot something, so definitely worth sticking with it!

I don't know if I have any suggestions but where do you give the injection? Could you do it in her tushy so that she doesn't see the needle? I assume with this type of treatment time is of the essence, so it's now or never?

@TheWinterChild

I don’t have this exact issue as my son, who is 5 and has daily GH injections, has always just accepted it. However, on a few occasions when we have forgotten about it I have injected him whilst he’s asleep and he doesn’t wake up or even flinch, could you try that? On a separate note there is a growth hormone deficiency group on FB if you’re on there. It might be worth posing your question there as you might get more responses. Good luck, hope you manage to find a way that works.

Thanks for your reply. I have actually suggested to OH that he does it whilst she's asleep, he isn't keen in case she wakes up freaks out and the needle snaps off in her leg or something! She is quite a light sleeper.

I will have a look for the FB group, I'm already on one for Turner symdrome support but it's pretty much a ghost town!

Also - is it worth training her to do them? I took over doing mine from y3/4 onwards and was a lot happier knowing exactly when the needle was going to go in!

@commitmenttosparklemotion

Sorry you’re going through this - injections are tough! Have you made contact with the UK Turner syndrome society at all? They’re fantastic and I’m sure will have advice. They also have meet-ups and I wonder if meeting others with TS who have been through the injections might be useful? For what it’s worth, I’m also mosaic and have ended up at 5’2 after Growth hormone, after a projected height of 4 foot something, so definitely worth sticking with it!

Thank you! I did speak to Arlene at the Turner syndrome support society after daughters diagnosis but before she started her injections, she was the one who advised me to use bribery and a penmate!

I know she will end up kicking herself later on in life if she doesn't have the injections, her small size has been bothering her for a long time now and it's really becoming very noticeable how much smaller and younger looking she is than her peers, she has dropped to the 0.4th centile.

Thanks for sharing your experience with it all, 5'2 is fantastic (taller than me!) I really wish she could get past this mental block she's having.

My child age ten recently started gh too and was very similar at first - needlephobic. We use easypod. I can suggest a few things that helped us get going if you want to PM but the one thing I highly recommend is to get a Buzzy which is like a vibrating ice pack - we have used this from the start and it seems to take any discomfort away. My child says there’s no pain. I’m pretty sure it’s the Buzzy we have to thank for this.

You need the Child Growth Foundation face book group! Loads in there with the same issues as you and great support/ideas.

It might be worth getting her some therapy to help with the needle phobia.

Do it when she’s asleep.

I’ve a child with a different syndrome who had GH from 13 months. Luckily she didn’t complain but on my parent support group lots of kids freaked out about it so the parents started doing it when they were deeply asleep. It’s such a tiny fine needle, a small volume and it doesn’t sting, so I bet she won’t even wake up.

PM sent

@steff13

I don't know if I have any suggestions but where do you give the injection? Could you do it in her tushy so that she doesn't see the needle? I assume with this type of treatment time is of the essence, so it's now or never?

She had the first one in her arm and the rest were all in her thighs, she wont even entertain the idea of having them anywhere else. I've offered to try her butt cheeks or her tummy but she's horrified at the very idea!

Yes time is of the essence, I believe most girls with TS usually start GH much earlier on than she did, she's only got a few years left that it will work!

Could you get some numbing cream so she doesn't feel it as much. I recently had a small amount of lip filler and the cream they used numbed my lips so I hardly felt the injection.

Perhaps you could put that on and do it in her sleep if she's still making a fuss?

Get practice nurse to do it and separate yourself from the whole thing?

Hi OP,
My DD is 8 and on GH. Is it Alcura that supply your norditropin? They're a bloody nightmare!

I'm also a type1 diabetic, so I have experience from the other side iyswim. With insulin, there is no choice, so I couldn't refuse. When dd was 6 and started on GH, at the start, she would get in a state and refuse. I phoned her nurse who told me that she shouldn't be given a choice. I felt guilty as hell, but after a couple of times of being held down, she was fine.

I would also try ice beforehand. Or get some pretend 'magic cream' like they do in hospital and tell her it will numb the pain. To take away the anticipation.

Finally, get the nordi nurse back out. Our nurse let my DD inject him.

To reassure you, having taken multiple daily injections from an almost identical pen and needle, it is virtually painless. It's the anticipation.

DD has grown loads and although still small, is now on the growth charts

@Thatsplentyjack

Could you get some numbing cream so she doesn't feel it as much. I recently had a small amount of lip filler and the cream they used numbed my lips so I hardly felt the injection.

We tried that at a hospital appointment when she had to have blood taken, she said she hates the numbing cream because it feels weird and refused to have it the next time. We may well try giving her the injection in her sleep though, although I'm not convinced she wont feel it instantly and leap 6 feet in the air she is that highly strung! Sigh.

@cakeflower

My child age ten recently started gh too and was very similar at first - needlephobic. We use easypod. I can suggest a few things that helped us get going if you want to PM but the one thing I highly recommend is to get a Buzzy which is like a vibrating ice pack - we have used this from the start and it seems to take any discomfort away. My child says there’s no pain. I’m pretty sure it’s the Buzzy we have to thank for this.

Thanks for the suggestion, I've had a look and can't see these available to buy anywhere at the moment sadly. They sound really good.

@commitmenttosparklemotion

Also - is it worth training her to do them? I took over doing mine from y3/4 onwards and was a lot happier knowing exactly when the needle was going to go in!

I have suggested this to her, she's not confident that she could do it.

Hi OP. Read your post and wanted to offer something as I have mosaic TS myself. Diagnosed over 25 years ago at about your DD's age. First of all this is all very new and a lot to take on. For all of you. It doesn't just impact the young lady. Be kind and patient with yourself and of course your DD. It takes time for the whole family to adapt and there is a lot to think about. Secondly, communicate. Keep taking to her about what is worrying her, how she feels (which likely varies day to day and possibly minute to minute at time). Remember, you need help and support too as well so make sure to include DH and support each other. It is a journey and there will be lots of challenges to come but together you can do it. If you have an open and honest approach hopefully DD will always feel she can come to you. Perhaps a pen friend with TS as I had would be an option. In terms of injections, it is tough but you do get there. I always did well with routine. Same time each evening. I'd have a little ice just to numb the area and would talk with my mum about nice plans for later or the next day. Try different sites - some were better than others. For example daft as it sounds my stomach was often easier than leg or arm. More there to pinch and put the very small needle in. Personally I found taking control and doing my own injections (with support of course) worked well. I got very skilled at knowing what worked for me. I wouldn't recommend holding her down and trying to force the issue, just because if she associates that to the injection it will be harder. Keep talking and using the professional experience of the consultant and nurse when needed. Sounds like you are doing a great job in difficult circumstances and it does get easier 🙂

@user1471530109

Hi OP, My DD is 8 and on GH. Is it Alcura that supply your norditropin? They're a bloody nightmare!

I'm also a type1 diabetic, so I have experience from the other side iyswim. With insulin, there is no choice, so I couldn't refuse. When dd was 6 and started on GH, at the start, she would get in a state and refuse. I phoned her nurse who told me that she shouldn't be given a choice. I felt guilty as hell, but after a couple of times of being held down, she was fine.

I would also try ice beforehand. Or get some pretend 'magic cream' like they do in hospital and tell her it will numb the pain. To take away the anticipation.

Finally, get the nordi nurse back out. Our nurse let my DD inject him.

To reassure you, having taken multiple daily injections from an almost identical pen and needle, it is virtually painless. It's the anticipation.

DD has grown loads and although still small, is now on the growth charts

Hi, we are getting our GH from Nordicare who are also a bloody nightmare!

It is very much the anticipation, she is working herself up to a ridiculous state, making herself hyperventilate and leaping away from the needle whenever it gets close!

She is like this with everything, she screamed the hospital down just having her blood pressure taken, she can't seem to handle even the slightest discomfort ever. Yet she insists she wants the injections. I spent an hour with her this evening trying to get it done with no luck, after I gave up and put the pen away again she spent the next half hour loudly and exaggeratedly sobbing because she wanted the injection she says. I am losing the will to live!

I was needlephobic as a child (still am, a bit) and would never have coped with daily injections. It is not a voluntary reaction, it is an utter irrational terror that you can't control.

if you can find a therapist who specialises in phobia, that would help.

Also, everyone has sleep cycles when you are lightly asleep / deeply asleep. I think an apple watch or fitbit worn overnight can track your sleep cycles. If you did this, you'd learn when she is deeply asleep so you could time night-time injections to the deep sleep phase.

She's 10 - what about doing it herself?

I got type 1 diabetes at just turned 11 and started doing my own injections immediately. I HATED anyone else doing them. My folks had to do a practice shot on me before we left the hospital and I hated not being in control.

Much more control over it when you are doing it yourself. They don't even hurt when you do it yourself, because you can control the speed/ pressure/ change spots if you hit a particularly sensitive bit.

I was needlephobic as a child (still am, a bit) and would never have coped with daily injections

You would if you wanted to stay alive, in many circumstances - millions of kids around the world have to learn to cope or die.

It's quite unhelpful and blinkered when adults say this kind of stuff.

@Chattygal

Hi OP. Read your post and wanted to offer something as I have mosaic TS myself. Diagnosed over 25 years ago at about your DD's age. First of all this is all very new and a lot to take on. For all of you. It doesn't just impact the young lady. Be kind and patient with yourself and of course your DD. It takes time for the whole family to adapt and there is a lot to think about. Secondly, communicate. Keep taking to her about what is worrying her, how she feels (which likely varies day to day and possibly minute to minute at time). Remember, you need help and support too as well so make sure to include DH and support each other. It is a journey and there will be lots of challenges to come but together you can do it. If you have an open and honest approach hopefully DD will always feel she can come to you. Perhaps a pen friend with TS as I had would be an option. In terms of injections, it is tough but you do get there. I always did well with routine. Same time each evening. I'd have a little ice just to numb the area and would talk with my mum about nice plans for later or the next day. Try different sites - some were better than others. For example daft as it sounds my stomach was often easier than leg or arm. More there to pinch and put the very small needle in. Personally I found taking control and doing my own injections (with support of course) worked well. I got very skilled at knowing what worked for me. I wouldn't recommend holding her down and trying to force the issue, just because if she associates that to the injection it will be harder. Keep talking and using the professional experience of the consultant and nurse when needed. Sounds like you are doing a great job in difficult circumstances and it does get easier 🙂

Hi, thanks for your reply its nice to hear from someone else who has mosaic TS and to hear your experiences.

It has been a lot to take in yes, the last few months have been a barrage of hospital appointments and tests for her and plenty of worries about what her future holds in store. Sadly I am mostly dealing with this alone, alongside having a 7yr old son who has also just had his own diagnoses of Autism and ADHD, their father also has autism and adhd and is in all honesty worse than useless. So it all falls to me and I feel like I'm drowning!

A pen friend with TS sounds like a nice idea, she doesn't know anyone else with TS and it could be good for her to have a friend with the same condition she has so I will look into trying to sort that out for her.

Thanks for the suggestions on how to make her injections easier, so far she is adamant she only wants them in her thighs and will not entertain the idea of trying a different site at all. I will give the ice a go though!