How do you deal with a child who will not cooperate with treatment?

[Stinkyfeet]

Hi, I hope you don't mind me posting here, but I thought you guys might encounter this sort of thing more frequently than others.

In a nutshell ds1 (8) was diagnosed with a brain tumour on 9th Sept; on the 13th Sept the whole tumour was successfully removed. The biopsy found it was a medulloblastoma (malignant tumour), so he is now under the Royal Marsden for radiotherapy and chemotherapy to (hopefully) ensure there is no regrowth.

He has had a portacath line (aka port) inserted in preparation for the chemo and numerous other times they will need to access it for bloods and other medication. This presents the first problem - he completely freaks out when the needles appear. It took 2 people to restrain him while the nurse attached the external line earlier this week, while he screamed the place down.

So the next problem is that he has refused to cooperate with the planning stages for his radiotherapy (he needs to lie on the table with a custom made mask on so they can take measurements for where the beams need to be directed). As a result of this the whole of his radiotherapy - 5 days a week for 6 weeks - will have to be done under general anaesthetic. The GA will have to be administered through his port.

The hospital are arranging for the child psychologist to meet with him, but I would imagine it will take some time for him to be able to talk to a stranger about his fears.

So, I am at a loss as to how we can help him. How can we make him understand that by refusing to cooperate he is making everything much harder and more stressful for himself?

Any advice would be so much appreciated.

[madwomanintheattic]

do they not have a play therapist? they are well used to such situations.

we do have to resort to some sort of sedation for dd2 (who is 8) for invasiv treatments, but she is much bette than she used to be. would oral sedation not work instead of such frequent ga's?

poor kid. it must be very scary. i'm sure the play therapist will have lots of books/ social stories about treatment etc.

(the mask thing was the bit dd2 hated the most btw. (once she had got over refusing poi nt blank to lay on any hospital bed ever) can you get it away from the 'treatment' atmosphere so that he can have a good look at it and practise putting it on on his own in front of a mirror? ie so that he is incontrol and knows what is going to happen? no scary surprises...

why have they not involved a playworker already? poor little lamb.

[Stinkyfeet]

Thanks for your replies.

I will ask about some sort of sedation.

We've had a play therapist involved, and she is lovely, but her techniques seem to be more appropriate for younger children.

The mask is actually one thing he's not that worried about - it looks a bit spidermanish! Today he refused to lie on the table as he said the deflated beanbag thing hurt his back and neck. They need to get started on the radiotherapy asap so unfortunately there isn't time for more chances and playing around with it all.

[madwomanintheattic]

yy. we are really quite brutal with dd2. if needs must, etc.

i think that you just have to get that across to him - it's going to happen whether he likes it or not, and he can make it easier for himself. and lots of sympathy, obv. but no messing.

poor wee man.

(only two people holding him down is quite good though at one point we had five holding dd2, and they only wanted to sedate her)

hope it's as stress-free as possible, under the circs x

[Stinkyfeet]

Thanks madwoman, it's reassuring to know he's not the only one!

Has your dd had treatment for the same thing? Is it ongoing?

[madwomanintheattic]

no - she has cp and periodically needs investigations for one thing or another.

we have friends who have two boys with glyoma though (and another friend whose dd is in her third remission after being told they could do nothing more for her...)

[madwomanintheattic]

we have really cool copies of her brain mris though - make sure you get some for ds.

[Stinkyfeet]

I imagine you just have to knuckle down and get on with it all then.

[Stinkyfeet]

Mmmm - not ready to see them yet! I haven't even asked how big the tumour was, although dp did ask, so I'll find out some down the line!

[CMOTdibbler]

Stinkyfeet, just to let you know that children who need help to get through radiotherapy aren't sedated as the anaethetists don't like to not have control of the childs airway, especially when they are face down, so its a GA or nothing. They use a very light anaesthetic so the children wake up fully in a few minutes after treatment, and they always make sure children on GA are the first of the day.

I guess the radiographers have tried the usual tricks like making a shell for you that he gets to put you into, projecting a film onto the floor of the treatment room to give him something to concentrate on, or just a bribery based system (one little boy I treated, his foster mum had arranged visits to the police, fire station etc each week if he cooperated)

Do you think talking to other children who have been there would help ? Maybe he'd be able to relate to them more and express his fears better

[madwomanintheattic]

that makes sense.

good luck x

[Stinkyfeet]

Thanks CMOT, that's all really useful. They hadn't tried any of those techniques - I just don't think they had enough time and they've had to make the decision regarding the ga so the treatment can be started as soon as possible. We did try bribery, but he gets so worked up in the moment that rational thought goes out of the window.

I'm not too worried about the ga; as you say, it will be very light and only for a short time each day. It's the needle issue that is more immediate, so I will ask if they can give him any sort of oral sedative to calm him down beforehand.

Talking to the other children could be very helpful actually, I hadn't thought of that. I'm sure there will be many other procedures to come where he will need to cooperate, so the sooner we can help him to understand and cope with it all, the better.

[CMOTdibbler]

I am a bit suprised they haven't tried tbh - although ga cover does need to be booked early, it can always be cancelled if the child turns out to cope, and where I worked (I did all the planning for medullablastoma children there so saw them all) unless they were tiny the paediatric specialist radiographers would go and see the children as soon as they had been seen by the oncologist to start preparing them and work with them.

Just knowing that radiotherapy doesn't hurt a bit and that all he has to do is lie still for 10 minutes and it'll all be over might help. No needles, no poking. It makes a loud buzzing noise but thats it.

Aardman made a film for children, voiced by real patients about radiotherapy - One of a Kind that he might find helpful

[Stinkyfeet]

It's all been a bit rushed tbh. Our first appt at the rm was 2 weeks ago, which went completely pearshaped when they announced they needed to take bloods. We had told him that we were just going there to meet the drs and nurses, and that they weren't going to actually do anything. So he really got off to a bad start there.

We've been there 7 times over the last 2 weeks, and only once has it been a nice, calm event where they've not needed to do anything to him or he's not needed to cooperate with something.

It's no wonder really that he doesn't want to go there and do what they tell him!