Young child routinely refusing medical intervention PTSD

[ipsogenix]

Hi,

I wondered if I might ask advice on helping a young child to get over PTSD type stuff from having too much medical intervention in the early years.

My ds (now aged 6) had a huge number of visits to GPs and health visitors and specialist in his baby and toddler years because of ENT trouble, and every single one of the medics insisted on making him gag so they could see his tonsils even though I'd explained that the tonsils were fine. It was his adenoids that were the trouble and those were eventually removed twice.

In the middle of this his nose was always too blocked with mucous to let him sleep, so that we had to put drops of water in his nose at night to help him breathe clearly enough to sleep.

All of this, and the various immunisations and other baby medical things involved holding him tight while things were done to him against his will. He is now 6 years old and after having had far too much medical intervention in his early years, he routinely screams and kicks at the suggestion of any kind of minor medical intervention.

Because he won't accept medical help now, this means he has currently got waxy ears that we can't fix, a thorn stuck in his foot that we can't get out, eczema on his face that we can't treat except when he is asleep, and hole in his tooth that the dentist says he definitely would not yet try to fill. He hasn't got a sibling, because life has never been calm enough since he was born to produce one, so he doesn't even see another child dealing with this kind of situation, and has little opportunity for fun to liven things up when life is going well.

We have been referred to a pediatrician because he is still getting a lot of viruses and missing a lot of school, but I dread going to see the person and having ds kick up even more fuss and get even more entrenched views about the medical profession, especially if they try to take a blood sample, which I know will not work.

I wondered if anyone might know some techniques that I could use to help ds get over all this? And failing that, might anyone know what form of words I need to use when talking to medical people to explain that ds has absolutely and totally hit his limit, and that just pushing their luck one more time is not going to be okay.

Thanks!

[QueenOnAPlate]

The hospital should have a play therapist to help - your child is far from unusual, and his response is something they will have seen a lot, so when you get the referral contact them and ask for play therapy support.

[ipsogenix]

Thanks, that's good to know. :-) Is there a form of words that I can use to explain the situation that is a bit shorter than what I've written above? I never know how to say it without going on and on, and I suspect they don't have the time.

[GinAndSonic]

With all due respect, if your child requires medical investigations, I think you should hold him firmly, arms pinned if needed, and facilitate the process.
Don't get upset. Be firm, be calm, be soothing. Afterwards big up how brave he was, get him a treat, tell everyone how good he was to let the Dr look in his mouth / take blood / check his blood pressure / whatever.

[GinAndSonic]

If he needs bloods a play therapist will be there as standard in my experience but you can request support from one for an appointment I should imagine.

[ipsogenix]

Gin That kind of work is getting very tricky as he is nearly 4 stone and 1.2m tall. Also I think it is cruel to do that for non-emergency medical things. Everything that ds has is non-emergency, and can wait until he is older if needed.

[HappyNevertheless]

Gin that's because he has been held down before that the PP's ds has such a high level of distrust. I'm not sure that pinning him down again if not essential is a good idea

OP I get that he needs to see the paediatrician but I'm wondering if some of the treatments can be eased off (eg drops in his nose -that's really uncomfortable).
I'm also wondering if he can do some himself. So to give him the responsibility to out the cream on fur the exzema and to decide if/when he is using it.
Teeth are hard. Of really needed (which isn't the case atm) they can sedate him (that's what happened with dc2)

[BombadierFritz]

Sometimes you just have to get on with things eg thorn in foot. He has a choice, perhaps a reward, but the choice is not 'have it removed or not' its 'be held down or not'.

The blood test - the play specialists are usually good. Think about if you want to use the spray or the cream that goes on before or nothing. When ds was bad we used nothing as the wait for the cream to work was more traumatic and he hated the cold of the spray. We also at his worst didnt bother with the whole distracting/play thing as it made it worse. Just got on with it, he screamed, was generally awful, but actually quicker and less traumatic than dragging it out.

The ears - is it medically necessary or just better? If not essential, can you leave it?

We used massive bribery - fantastic toys - for the worst stuff

Ds is 13 now and fine with medical stuff

[Thistly]

Do you take him in with you to watch when you go to the dentist etc?

[ipsogenix]

The problem I foresee with play therapy is that he is used to play therapists being a sign impending trouble. We had a lot of trouble getting him into pre-school because pediatric wards are full of nice toys and nice ladies who make friendly overtures with nice toys, and he knows that the next part is always going to be pretty unpleasant. By the time he was three years old, he he knew that a friendly stranger with a nice toy was not to be trusted, and getting him to enter pre-school at all was a big struggle.

I wonder if the pediatrician would leave non-emergency interventions until he is a bit older if we ask. The only thing he might want to do is a coeliac test, but as I understand it, part of the vertical coeliac test is looking at genes, so presumably they could test dh and myself instead and get the same information.

[hazeyjane]

My ds is nearly 6 and has also had lots of medical interventions, unfortunately it is likely that he will have to have a lot more. He has sensory processing issues and so even everyday things like cleaning his teeth are horrendous, but he has to have them done, and he has to go to the dentist and have dental treatment etc.

My job is to be calm, and help him through it, and help him try and understand why he is having things done. It is not easy it is one of the hardest thing I have had to do in my life but it is necessary. I make sure medical all professionals understand certain things about him, eg don't use emla cream. I fight his corner, whilst remembering that they have seen children who have had far more medical procedures than ds.

Ds has friends who spend a lot of time in and out of hospital with seizures, who are tube fed, need oxygen and have had far too many operations in their short lives. They all react differently to these things, it is not easy for any of them, and as parents all we can do is help them get through each procedure with as much love and resilience as possible.

[ipsogenix]

Bombadier I think you may be right that it's best to wait until older for the scary stuff. At least the pediatrician could tell us what test need to be done and then we could wait until he is old enough. That would make things a lot easier.

None of it is really essential at the moment. I suspect that if any one thing because essential then they might just give him a general anaesthetic and do the lot all at once (blood test/grommits/waxy ears/filling in tooth).

[GinAndSonic]

I'd see the removing the thorn as essential.

Ive been there. Sometimes you just have to pin them. Obviously not if it's not important but tbh if I got a referral to investigate the reasons behind ongoing / repeated illnesses I'd be tripping over myself to get it done asap.

Do you get upset when he does? Does he know it worries you? If so it might be increasing his anxiety. Once I realised ds was being made worse by me letting him see I was upset I became much more hard faced. Firm, calm, soothing. Then heaps of praise. He has become less nervous as time goes on. Now he's really quite calm unless it's something unfamiliar or uncomfortable but even then we can work with him eg letting him use the blood pressure machine on me before he gets his done. Blood taking, tends to be very much a pin down and shower in comics and beanie babies afterwards kind of job.

[cestlavielife]

Diff options...

1. Go to gp and Get referral to play therapy or a camhs specialist to address the ptsd
   
2. Pay privately a psychologist to work with your child. ..use aba type approach my ds has asd and this has worked to get him sitting in dentist chair. .but it meant a lot of work with a specialist dentist open to yhis who worked with the school. .the school for asd has a fully fledged dentist room so kids can get used to tge room and practise frequently.
   

3.
If gp practice is friendly arrange weekly appointments or with the nurse so that he gets used to going routinely . First few times nurse won't examine him at all unless he offers... build up to more invasive looking in ears etc

He won't suddenly be happy with medical intervention but you can work on it. Start with ho and ask about referral and also ask if possible to visit regularly to bud tolerance.

[GinAndSonic]

Also, talk lots about how the Dr's and nurses are only doing these things to help. Never "oh poor you, did the nasty nurse poke you?". My ds is also 6 but he now thanks the Dr when leaving even if it's been a kicking screaming thing, like the pupil dialating drops that he's got to have tomorrow.

[cestlavielife]

Start with gp.
If his anxiety has gone beyond normal and is ptsd then treat it behaviorally. Get therapy. ..otherwise you going to be exposing him to needless sedatives

[GinAndSonic]

I know I sound like a cruel mother. But I've been doing roughly a dozen big appointments per year, plus extras for illnesses plus twice daily inhalers since he was ten moths old. I've had to pin the arms of my struggling child then cry in the toilets later more times than I care to remember, I know it's horrible and hard. I hope you find a way forward.

[cestlavielife]

The coeliac test looks at his antibodies so you can't rely on genetics and parental testing. You need to know what his body is producing. Whether his autoimmune response is off or not.

[cestlavielife]

Does he have any learning issues ?
You could also look at general anxiety techniques. Get the book huge bag of worriesor
What to do if you worry too much a kids guide

[cestlavielife]

If he does have coeliac you need to know now..as untreated coeliac can lead to v serious disease ...so if they want to do that test then Yeh get the blood test done.

[Andro]

I wondered if anyone might know some techniques that I could use to help ds get over all this?

DD has required the intervention of a psychologist, but that was as a result of a hugely traumatic event. I had the language to help her understand the medical event, but the trauma needed a specialist.

And failing that, might anyone know what form of words I need to use when talking to medical people to explain that ds has absolutely and totally hit his limit, and that just pushing their luck one more time is not going to be okay.

'My ds has had a large number of medical tests and procedures, he has not coped well with these and is now very resistant. I am concerned that with each appointment he gets worse, I don't know how to get him the care he needs without the situation deteriorating further.'

[ipsogenix]

Andro I know what you mean. It's so hard isn't it? I called the pediatrician today and hopefully we can discuss how to manage it ahead of time.

[confusionis]

It sounds as if you have managed to medicalise things.
Lots of good advice on here from posters. Best of luck to you, and the poor healthcare providers who have to do the interventions that are needed.

[Andro]

ipsogenix - sometimes it seems almost impossibly hard!

I couldn't do the 'restrain and get it done' method with dd, her fear was so bad it was causing her pulse to rocket and her blood pressure to tank - there was concern it could be very dangerous for her.

This is where knowing your child is vital; some children can be forced through it until they understand (horrible for everyone but gets things done), others would develop a long term resistance to or even phobia of medical care if it were tried. If only there were some easy answers.

I hope the paediatrician can help you and your ds for you and for him!

[ipsogenix]

Thanks Andro my ds is definitely the phobia type and I really don't want to go there. One of my neighbours has just died in his 40s because he was afraid to visit the GP, which is brought it into sharp relief for me.

[Squashybanana]

If he's 6 he's old enough to have some desensitisation work, maybe via Camhs if you aren't able to do it. Have a look at 'Anxious kids, anxious parents' book which gives parents a useful guide to avoid accidentally reinforcing a child's anxiety. Basically it involves accepting and normalising the anxiety, and taking things slowly. The trouble with avoidance is, the longer it goes on, the bigger and scarier the thing he wants to avoids seems. Best try to sort it soonest.