4 year old will not cooperate at hospital appointments

[Oysterbabe]

My DD has a congential heart defect. She had open heart surgery 2 years ago to close a small hole and has been left with a mildly leaky valve. She has to have an echo every 6-12 months just to make sure it isn't getting worse. She screams and cries every single time which means they can't get the images they need. Her lungs inflate, her heart hammers at a million mph and they just can't see what's going on when they're looking for a quite subtle jet of blood going the wrong way. She's had a couple under sedation just so they can have a proper look. Every time we think next time she'll be older and more reasonable. It hasn't happened yet. Her next one is on Friday and I mentioned it today to start bringing her round to the idea. She started crying straight away and said she isn't going. We've already tried everything we can think of. Bribes and distraction, practicing at home in the bath with shower gel, watching videos of it being done. I just know it's going to be another disaster and I'm dreading having to do another sedated one. I just don't understand the issue, it doesn't hurt at all.

Does anyone have any tips or wisdom?

Has the hospital got a play therapist who could work with her?

They do have one and she's tried bless her.
Last time she did her best with an ipad, soft toys and bubbles then pulled out her trump card and wheeled in the sensory cupboard, which was basically a wardrobe with a disco ball inside. It didn't work but made DH and I giggle at least.

She's quite a shy and reserved child and she doesn't like strangers touching her. The more stressed we get and the more people are fussing and waving toys at her the worse it makes things I think.

I'm going to have to take her on my own this time due to COVID. I think I'll just tell her that it has to happen and if she lies still and let's them do it I'll buy her a toy after and just see how we get on.

Although that approach hasn't worked so far.
She's really into trolls atm, and Barb the rock troll specifically. Maybe I'll buy her a Barb toy to give her immediately before to hold during.

I think something to hold might be a good idea, something comforting or something that feels nice and she can fiddle with.

Is she able to articulate what stresses her out? Is it specifically the touching? Is there a 'solution' you can agree e.g. she wears a superhero mask and superheros are brave, or use a magic cream so they are touching the cream not her. Could you try a social story, basically writing a story about how she feels scared but tries to be brave, she can take deep breaths to stay calm and afterwards have a treat. Obviously relies on her having good language skills, and she may just be too stressed.

Her language is very good, she's nearly 5. I think I need to choose a calm moment to really try and get to the bottom of what the problem is and what might make it better for her. She doesn't like the jelly and she doesn't like having to lie down, although we've tried sat up on my lap and that didn't help either.

She had a few traumatic moments before and in the days after her surgery where she had to be held down while doctors did things like take blood, remove lines and dressings. For a week after she was too scared to lie down and would only sleep propped up with pillows. I wouldn't be surprised if there are some lingering memories of procedures in hospital. She didn't cooperate before the surgery either though.

It doesn’t hurt, but that doesn’t mean it isn’t terrifying. She is in a strange place, expected to hold perfectly still amid lots of equipment. There are plenty of adults who struggle with that situation.

It sounds like you are doing the right things. Practicing, talking it through, bribes. One other thing might be to ask them to demo on you. Obviously not doing the actual procedure, just showing that you can lay there with some gel and such.

I was going to suggest a phone loaded with her favourite programmes as that helps with DS’s eye tests (the nasty stinging eyedrops are pretty horrible for him), but I see you tried an iPad already

Could you try getting her to play at doing the scan on one of her dollies at home, perhaps? Perhaps even get her to give you and DH a scan? Just wondering if that might help to make her feel more in control? I’m thinking of doing something similar with DS before his next eye test as I’ll have to take him on my own and it’s going to be a tough one.

It does sound like she might have traumatic memories and feel scared, which might make it hard for her to be rational about it. Maybe talking through that might help but sounds tough for you both

She might need to see the play therapist when it isn't an actual appointment. They need to role play it and get her comfortable. She's sounds fairly traumatised by the whole thing. She needs to be desensitised to the whole procedure bit by bit.

My son has an immunodeficiency and blood disorder all though he’s had over 500 blood tests he still does the same so gosh phoned us and started bringing us in for play therapy when he didn’t need a blood test using a favourite teddy and they’ve even given me a blood test to try and help I don’t know if they still offer this with Covid it’s doubtful but we where taken in once a week during school holidays to work with the play specialist as we know it’s a life long problem so he needs to get used to them with as important as the heart id ask if your hospital offer anything similar. Good luck

Can you ask her for ideas? Let her know the appointment is soon and you're a bit worried that the doctors won't be able to see what they need as last time she was a bit upset. What does she think would help her be still and quiet while they check her. Try and make it a positive conversation where you want her considered opinion on the best way to deal with it. It might be better if you talk about dolly or another little girl who doesn't like the appointments and make her the doctor but keep it the same scenario and she'll get it and might enjoy playing along and having her input considered vital. Take any/ all ideas seriously and write them down in a very important list and offer one or two of your own but mainly see if she can see any way she can make it work. If she feels listened to and in control she might come up with something random that she feels good about eg eat cake at the same time/ wear headphones and listen to music/ hold new toy and your hand at once and go swimming after as a treat. Her idea is more likely to work for her than anyone else's! Best of luck it sounds stressful for everyone.

I think that if this is going to be a regular thing, the play therapist needs to see her when she isn't going for an appointment. They can then play games with the dollies as patients etc. Another good idea might be a social story that you read with her about it. Could she maybe see you lie on the bed and have a pretend echo?

Couple of thoughts... you may already have tried them all... would it make a difference if the gel was warmed a bit rather than cold (so it’s a slightly different sensation to previous traumatic goes)?

Would she have a play with the probe on herself before they started doing the proper scan (something daft like see if she can see the sandwich she had for lunch or whatever in her tummy!). Or, if it’s the stranger touching her that she doesn’t like, could you hold the probe for starters and the sonography/cardiologist ‘steer’ you until she’s happy/doesn’t notice them taking over?

Could you get her to just fall asleep rather than needing sedation (perhaps something to eat, a warm dark room and a nice story & cuddle and then they pounce once she’s sleeping?).

Finally, could they turn the volume down on the machine (or use headphones... not sure if that’s poss) if she doesn’t like the sound of her heartbeat?

Good luck!

Would some kind of control help?
Could she put the jelly on herself (and maybe a bit on you) and guide their hand round?

I sympathise. I have a ds who needed hearing tests regularly, and he either ignored them totally and played by himself, or refused to put the headphones on.
When he was about 4/5yo they told him he was a pilot and he had to press the button to drop the bomb (very into WWII) and after that he was good as gold, and even looked forward to it.
I don't think it was just a case of finding what to do, but also maturity.
I also introduced that if we were quick (which basically meant he did it straight off) then we'd got time to nip in and buy something little from the shop (normally one of the second hand books) on the way out.

Thank you for all the suggestions. Definitely some more things to try.

We're going to play hospitals later and let her be the doctor and put jelly on everyone. I won't suggest she has a turn this time unless she asks. We've talked about what treat she might like to have after her appointment. I think I really need to prepare her for the fact that it's happening.

She likes going to the actual hospital because of all the toys and things in the waiting area. I strongly suspect they won't be there this time however. She doesn't mind all the things they do first; height, weight, oxygen saturation, blood pressure. She's even OK with the ECG about 70% of the time. It's just the echo.
It's as soon as we ask her to take her top off that the trouble starts.

If she won't do it this time we're going to need to come up with a plan with her consultant. Luckily she has a new consultant who is very nice and understanding. Her previous consultant was a miserable cow and has fortunately now retired. In the 3 years she was treating DD she never spoke to her once, only spoke to me or DH. She would just huff and say 'you need to make her comply' Believe me, we were trying our best.

Is she back in school? I teach in sen but even when I was in mainstream if we knew a child was going through something like this and finding it hard we would do something general about it class.. Maybe ask her teacher? It doesn't have to be a lot and it would never been singling her out but things like the role play corner turning into a hospital for the week, story time being a hospital story like whoops a daisy hospital or topsy and Tim book.. There's lots of good ones. It might help especially as it would be in a fun environment with her friends.

She's just started reception. Her school has an exceptionally protracted settling in period so she's only in every other day until after half term. Maybe I'll mention it to her teacher when I drop off tomorrow.

If taking her top off is a trigger point then could you cut and put some Velcro/poppers on an old top so that she can stay dressed but just open a flap in her top?

I took DS for an eye checkup last week, and all the toys and books were gone from the waiting area - is guess it will be the same everywhere, unfortunately. So probably worth preparing her for that. What if you got her a magazine on the way though, with the plastic crappy toys they all seem to come with, so she’s still got something new and exciting to play right while she waits?

@Oysterbabe that is a long settling in period!
The other thing you could try is making a really simple social story for it for her. Some of the NHS sites have ones made already for children having these types of things so there might be one online already that would explain to her exactly what will happen and reinforce to her that it won't hurt and then you could add your own bit at the end saying what treat you will have after e.g. Going to get a new toy from the shop etc.

Could she wear a shirt so she only has to expose the minimum?

Could you try just leaving her with the staff? I used to work in a hospital with children and they were always so much better behaved when the parent wasNt in the room with them

I'll have to take her in school uniform so she can go straight there after. One of her school dresses is a gingham one with a zip up the centre. If she wore that she could probably leave it on and just undo it. Worth a try.

It,s very difficult with an uncooperative child isn,t it. And you think well the nurses would be used to it, but somehow it comes back to the parent feeling stressed and that somehow we should be doing more. I say yes to bribary. (well we call it a reward.) Yes to front opening top or dress. Yes to explaining what will happen and going through her fears with her.

My son had a lot of medical intervention from age 3+, it was really very difficult - he cried and screamed and was very stressed. It was so incredibly hard. He had several surgeries & radiation: awful beyond belief.

Play therapists just added to the stress for him - he didn't want to find wally, watch the ipad or do anything while he was getting a blood test for instance. I think rewards are important, even if they don't make the next test any easier.

The only suggestion i disagree with above is leaving your child with the nurses. There is no way I would abandon my youngster while they're experiencing something very traumatic for them.
Not all children sail through these things - it's just how it is.