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?

My DC3 has daily GH, but she is younger and we've been doing it since she was 8 months.

Where does your DD have to inject? Is she physically able to do it herself?

I assume you've tried numbing sprays / gels and the adaptors so you can't see the needle etc?

Does she actually find the injection painful? Or is it purely working herself up?

We often do my 3yo when she is asleep and she doesn't feel it. I guess it's rather unethical to do that to an older child though.

I would echo getting some therapy about the needle phobia and interventions in general. In the meantime I would have some clear boundaries, I have used this with child patients over the years. So an agreed plan with her outside of the time for injections, for example, I will ask you once, twice or three times within 5 minutes if you want your treatment. If you don’t agree then the injection will be put away and we will do bedtime as usual. That’s just an example but agree a much shorter timeframe and once it’s over no further chances for that evening. It’s not about trying to force her to do it within 5 minutes but more around there will only be a controlled amount of time where it may be an issue and she knows that every night.
At 10 I would not be holding her down and injecting her, perhaps an agreement you will try some numbing cream when she is asleep and if she wakes up or doesn’t like it you won’t try that again? Best of luck with getting this sorted

@Oinkypig

I would echo getting some therapy about the needle phobia and interventions in general. In the meantime I would have some clear boundaries, I have used this with child patients over the years. So an agreed plan with her outside of the time for injections, for example, I will ask you once, twice or three times within 5 minutes if you want your treatment. If you don’t agree then the injection will be put away and we will do bedtime as usual. That’s just an example but agree a much shorter timeframe and once it’s over no further chances for that evening. It’s not about trying to force her to do it within 5 minutes but more around there will only be a controlled amount of time where it may be an issue and she knows that every night. At 10 I would not be holding her down and injecting her, perhaps an agreement you will try some numbing cream when she is asleep and if she wakes up or doesn’t like it you won’t try that again? Best of luck with getting this sorted

Thank you for your reply, I think that actually therapy sounds like the best way forward. Do you know how I can go about arranging this, do I speak to her GP or go through her consultant at the hospital?

We have been trying the limited time frame for her to decide, she doesn't decide anything and the pen has gone back in the fridge every single time and then we get half an hour of loud sobbing because she actually wanted it!

I absolutely wont be attempting to hold her down, I'm only 5ft tall myself and she is surprisingly strong when she wants to be. I also refuse to force her to have these injections, it has to be her own choice to have them.

Hi, the buzzy is available in the Uk here (this is where we got ours two months ago). www.buzzy4shots.co.uk/BuzzyShop.html
It is pretty costly (£39) but I think they offer a refund if it doesn’t work on your child’s case.

My son also had needle phobia therapy, which helped. We were advised forcing them or doing it while asleep is not a good idea (at least at this age) - it’s important for someone with anxiety to feel in control.

Emla cream - we were told by nurses that you get used to this so it stops working so well - but you could try it in short term. With the buzzy we have not needed to.

Ah, I just noticed it’s out of stock till end of November but you could get one then.

Ps my child also has a genetic syndrome and is incredibly highly strung and anxious. I totally get it. I thought my son would never cope. But they can do it. Hang in there

@Crunchymum

My DC3 has daily GH, but she is younger and we've been doing it since she was 8 months.

Where does your DD have to inject? Is she physically able to do it herself?

I assume you've tried numbing sprays / gels and the adaptors so you can't see the needle etc?

Does she actually find the injection painful? Or is it purely working herself up?

We often do my 3yo when she is asleep and she doesn't feel it. I guess it's rather unethical to do that to an older child though.

Hi, thanks for your reply.

She can inject in the arm/leg/tummy or bum but she refuses to try anywhere but her thigh because she said it was less painful than the 1st injection in her arm.

She was doing relatively well with it in the first couple of weeks, she realised fairly early on that the less tensed up she was the less it hurt and she wanted a bit of chocolate badly enough to allow the injection, but then she just regressed completely for no apparent reason, started jumping about and working herself up to a state. She says she does find them painful, but she refuses numbing spray because it feels weird and she doesn't like it.

She is extremely difficult with anything medical, she screamed like she was being murdered just when having her blood pressure taken.

@cakeflower

Hi, the buzzy is available in the Uk here (this is where we got ours two months ago). www.buzzy4shots.co.uk/BuzzyShop.html It is pretty costly (£39) but I think they offer a refund if it doesn’t work on your child’s case.

My son also had needle phobia therapy, which helped. We were advised forcing them or doing it while asleep is not a good idea (at least at this age) - it’s important for someone with anxiety to feel in control.

Emla cream - we were told by nurses that you get used to this so it stops working so well - but you could try it in short term. With the buzzy we have not needed to.

Thank you, I will definitely look into getting one of these when they are back in stock.

How did you arrange the needle phobia therapy, was that through your family GP?

A therapist
Maybe hypnotherapy if they do kids
Some CBT sessions
Chikd psychologist behaviour support

After weeks of tears, shouting and stressful bedtimes, hypnotherapy worked almost instantly for my daughter.

Talking therapy would be useful in the longer term but it can take multiple sessions over an extended period of time.

Best of luck to you and your DD

As an adult with sensory issues and also had to have HGH, the only thing I can say is it does take time sometimes.

I know it's not what you want to hear, but it sounds like she really has a strong fear. Some counselling may help her overcome this to a degree but on a day to day basis, it's just going to take time.

I understand your other children also need time so it may be worth reviewing your daily schedule to see if there's a time of day where you can be more flexible to meet her needs so that it's not taking away from your other children, but whilst also baring in mind this is a need too.

Just always remember to approach the daily injections as calm, without judgement, and confidence.

Hesitation, frustration, upset and anger only hampers any progress made, even though it sounds highly frustrating and I would not like to be put in your shoes.

For me, becoming confident in administering it myself was the key. The apprehension of other people administering it was hellish. But it still took me months to learn that I could do it myself.

That is tough OP and a lot for anyone to deal with. I hope your son will also get the necessary support. It must have a been a very worrying time and scary getting a diagnosis. For your daughter too I imagine she is still processing. Now you have a diagnosis there is a focus and you know what you are doing. It's very early days but the hospital barrage can be a logistical challenge. I had a diary and a set routine for hospital days, including having all my things such as appointment card and sharps box ready the night before with the journey planned. Before I gave my own injections I had an orange and used to practice on that. I will also admit I could be very willful and needed firm handling at times. I'd work myself up and that of course made it harder as if you are tense you may well feel it. My mother had to be very firm, sit me down and say this is how it is - I don't want this any more than you but it is 2 minutes and I will always be here. Naturally there were times when I'd lash out and have a tantrum and only when I grew up did I realise how hard that must have been for her. I suspect there was some guilt there too as it isn't known what the cause of TS is and no parent wants their child upset. It honestly does get easier though and I have a fantastic relationship with my mum. I'm now independent, happy and adopted the motto TS is a part of me but it doesn't define me. I define me. Your daughter I'm sure will be the same.By the way every girl is individual so don't listen to the can't and won't brigade. I will never be a maths wizz or reach the top supermarket shelves without a little creativity but it's all good. Do take care of yourself - you can't pour from an empty glass x

@Couchbettato

As an adult with sensory issues and also had to have HGH, the only thing I can say is it does take time sometimes.

I know it's not what you want to hear, but it sounds like she really has a strong fear. Some counselling may help her overcome this to a degree but on a day to day basis, it's just going to take time.

I understand your other children also need time so it may be worth reviewing your daily schedule to see if there's a time of day where you can be more flexible to meet her needs so that it's not taking away from your other children, but whilst also baring in mind this is a need too.

Just always remember to approach the daily injections as calm, without judgement, and confidence.

Hesitation, frustration, upset and anger only hampers any progress made, even though it sounds highly frustrating and I would not like to be put in your shoes.

For me, becoming confident in administering it myself was the key. The apprehension of other people administering it was hellish. But it still took me months to learn that I could do it myself.

Yes she is very anxious around anything medical since her diagnosis, she has had to have hearing tests and heart and kidney scans and blood tests etc, most of it not in any way painful yet she has reacted negatively to every single part of it. She screamed and held her breath when having blood pressure taken, she made a huge fuss about just lying on a bed for an ultrasound even though she was assured it wouldn't hurt at all, so made a huge fuss about the jelly instead. She made a massive fuss about the ECG because she didn't want the (female) doctor to touch her chest.

We have given her the option of learning to use the pen herself but she is reluctant to try.

It is highly frustrating, she insists she wants the injections but also insists on making as much of a drama out of it as she can and never actually allows us to give the injection. I know she is going to absolutely regret this when she's a couple of years older and I feel like I'm failing her by not being able to help her get over this.

It doesn't help that I'm never sure who I actually need to speak to about this, her consultant at the hospital or the nurse from Noricare healthcare at home, our GP or maybe the other consultant she was originally referred to for her anxiety and behavioural issues at the Child Development Centre! None of them are easy to get hold of either!

You can buy that local anathestic cream from the chemist - EMEA cream - ask the pharmacist if its safe to use everyday. You can buy bandages to keep it on for 20mins, but we find cling film better as the bandages catch on hair taking them off. Although if you are doing it on her leg then you would need to wrap around the limb.

My eldest child had a needle phobia. Or was so bad that he had to either be sedated or have four staff hold him down to have injections. I was out of my kind like you and four years ago we had a breakthrough and this is what we did.

Every day (particularly when I knew he had to have a injection) we would watch YouTube clips of brave children (and this is key as you don't want your DD to watch children having their injections) having their injections, blood tests done. We did this everyday! We then purchased a game stimulation of a dr game where the gamer acts as a doctors and gives injections to patients. We did this everyday and my sons needle phobia went!

Her father and brother have ASD and you are describing her as highly strung and exceptionally sensitive. Are you sure she does not also have ASD herself?

I am autistic and your daughter’s reaction sounds EXACTLY how I am with anything medical. For me it’s a strong dislike of anything/anyone touching me along with a pathological terror or anyone having any control over my body. I would also desperately want treatment and desperately be unable to bear it. For me, doing it myself would be major incentive to be able to do it.

Sorry, typo- you don't want your DD to watch children crying over their injections.
But it helped enormously as, four years later my son has no needle phobia.

@user1471548941

Her father and brother have ASD and you are describing her as highly strung and exceptionally sensitive. Are you sure she does not also have ASD herself?

I am autistic and your daughter’s reaction sounds EXACTLY how I am with anything medical. For me it’s a strong dislike of anything/anyone touching me along with a pathological terror or anyone having any control over my body. I would also desperately want treatment and desperately be unable to bear it. For me, doing it myself would be major incentive to be able to do it.

Well actually it's funny you should say that, we have had concerns she might have ASD since she was at preschool and so did her preschool staff. I spoke to our Health Visitor about our concerns when DD was 3 and the HV came out to our house to do a Developmental Review, the result of which was that she had no concerns and said DD seems very bright and happy.

Her teachers at school also raised concerns, I made an appointment to see our GP who referred her for assessment for ASD at our Child Development Centre. She was assessed last summer and told no ADHD and does not think she meets the criteria for an autism assessment. It was at this appointment that her small size was raised as a concern and that's how the whole mosaic Turner syndrome diagnosis came about.

After her diagnosis I had a long phone call with the head of the Turner syndrome Support Society, who told me that this highly strung and anxious behaviour is absolutely common among girls with Turners, she told me her own daughter was very much the same as a child. However, at a recent appointment with a Genetecist I was told that there is absolutely no link with Turners and behavioural issues!

I think I probably need to go back to the Doctor at the Child Development Centre about all of this.

@secular39

My eldest child had a needle phobia. Or was so bad that he had to either be sedated or have four staff hold him down to have injections. I was out of my kind like you and four years ago we had a breakthrough and this is what we did.

Every day (particularly when I knew he had to have a injection) we would watch YouTube clips of brave children (and this is key as you don't want your DD to watch children having their injections) having their injections, blood tests done. We did this everyday! We then purchased a game stimulation of a dr game where the gamer acts as a doctors and gives injections to patients. We did this everyday and my sons needle phobia went!

Thanks for your reply, that sounds like a good idea and I will absolutely give that a try - it certainly can't hurt! I imagine she'd enjoy a game like that!

Hi Op
Definitely go back to the TS support group and the child growth foundation. I would also speak to your Paediatric endocrine nurse specialist in the hospital and ask them about a different GH device. There used to be a needle free device but it's off the market now unfortunately. The easy pod is a good one (someone else suggested it). Also make sure she's having the tiniest gauge and length of needles.
I would NOT advocate doing it when she is asleep... if she wiggles then yes, the pen may scratch her or the needle may break... and if she suspects you're going to do it when she's asleep she will lie in wait wild awake!
Ice is a good one, plus distraction with TV, iPad etc. EMLA may work for a couple of days but not great in the long term.
Happy for you to pm me if you want further info. Arlene at the TSSS is absolutely amazing and the support network the girls / women have is superb. Only saw Arlene this week :) x

Have you tried both of you giving the injection? Start slow day 1 hold the pen to her thigh with her for 5 min. Don’t focus on it ask her some random questions on topics she’ll talk about and when the time’s up… give her the option… you press the button, I do, or we put it away. But if she chooses not to, then I would ignore the wails, simply tell her tomorrow you’ll try again.

Repeat the next day… but wait until she has something really important to tell you about, you know the type of thing she’s bursting at the seams to tell you and try again, but this time tell her you’ll talk about whatever after 5 min. Same routine you both hold the injector, give it 5, then choice.

It sounds as though she’s built this up so much in her head that you are all allowing it to take over your lives. You both need to limit the time, effort, and emotion that you’re putting into it.

@Woofsaidtheladybird

Hi Op Definitely go back to the TS support group and the child growth foundation. I would also speak to your Paediatric endocrine nurse specialist in the hospital and ask them about a different GH device. There used to be a needle free device but it's off the market now unfortunately. The easy pod is a good one (someone else suggested it). Also make sure she's having the tiniest gauge and length of needles. I would NOT advocate doing it when she is asleep... if she wiggles then yes, the pen may scratch her or the needle may break... and if she suspects you're going to do it when she's asleep she will lie in wait wild awake! Ice is a good one, plus distraction with TV, iPad etc. EMLA may work for a couple of days but not great in the long term. Happy for you to pm me if you want further info. Arlene at the TSSS is absolutely amazing and the support network the girls / women have is superb. Only saw Arlene this week :) x

Hi, thanks for your reply. I'm not sure if we have a Paediatric endocrine nurse specialist, I may be wrong though it is getting a little bit confusing with all of the different doctors and nurses and specialists we have seen recently.

I have spoken with Arlene before and she was absolutely lovely and very helpful, I will give her another call.

I did not know before this thread that there were other types of devices available, I've found Nordicare who supply our pens and absolute nightmare to deal with, the staff on the phone are not medically trained and so cannot answer even simple questions about the devices apparently, they take your details and then never get back to you! Then you finally speak to someone who seems to understand your problem and says they will send a penmate to hide the needle, delivery for tuesday that then doesn't arrive! Call back only for them to say the order was cancelled, no idea why and now they don't know what a penmate is and will need to take my details to get someone medically trained to call me back to arrange another delivery! Its like banging my head against a brick wall!

Hi Op, my daughter is 14 and has Turner Syndrome, diagnosed whilst I was pregnant.
Very much like your daughter, DD is really anxious surrounding anything medical. DD started her growth hormone at around 8 years old and initially we experienced the exact same situation as you.

DD uses the Surepal pen with super fine needles. She absolutely hates needles but as these are so fine it reduces the discomfort a bit. The pen has a guard (of sorts) so that the needle is never visible - this also helped to make it less of a visual thing and reduce the anxiety.

At around 10 we encouraged her to administer her own injection so that she felt she had some control over the situation. Prior to this we would get her to place her hand on top of ours whilst we did it - this also seemed to help.

We found that it takes time for DD to adapt to all of the new places, people, experiences but it does get better and easier.

My DD would happily send some words of encouragement if it would help your DD to know that there is someone else out there that's experienced the same.

@PootfrintsInTheSnow

Hi Op, my daughter is 14 and has Turner Syndrome, diagnosed whilst I was pregnant. Very much like your daughter, DD is really anxious surrounding anything medical. DD started her growth hormone at around 8 years old and initially we experienced the exact same situation as you.

DD uses the Surepal pen with super fine needles. She absolutely hates needles but as these are so fine it reduces the discomfort a bit. The pen has a guard (of sorts) so that the needle is never visible - this also helped to make it less of a visual thing and reduce the anxiety.

At around 10 we encouraged her to administer her own injection so that she felt she had some control over the situation. Prior to this we would get her to place her hand on top of ours whilst we did it - this also seemed to help.

We found that it takes time for DD to adapt to all of the new places, people, experiences but it does get better and easier.

My DD would happily send some words of encouragement if it would help your DD to know that there is someone else out there that's experienced the same.

Hi, thanks for your reply. It's really helpful to hear others stories of experiencing the same issue, thank you! We have a Norditropin Nordiflex pen and have just received a penmate for it, which covers the needle. She still knows its there though, it hasn't reduced her anxiety at all. It's actually not a nice pen to use, once you push the button it twists as you depress the button which seems quite clunky and hard to use gently. I think she would actually struggle to use it herself even if she could get past the thought of a needle piercing her skin. I'm not so sure about her placing her hand on top of her dad's while he tries to give the injection though as she is so erratic someone is likely to get stabbed by accident!

Might be worth enquiring about play specialist support. Some hospitals have qualified play specialists to support children going through medical procedures

Are you doing it in her stomach or legs? I use injection pens for a different condition and the legs REALLY hurt but the fatty bit on the stomach is much better.

You could try a numbing cream too if it's the pain she's scared of.