To think actually, they should give IV antibiotics to my (likely) autistic child?

[MrSpock]

Ended up in A&E with DS1, who’s 3, after his temperature went to 40.1 at 3am a few nights ago and he was not himself. He had recently had grommets and he’s got an ear infection.

Prescribed amoxicillin.

This would be fine, except DS1 is being assessed for autism and has sensory issues. He will not take antibiotics. It’s not a simple job of refusing, it’s a whole kicking, screaming, biting affair and it takes two adults an hour to administer it. He had a panic attack last time and I’ve never seen him so frightened. I can’t explain how severe it is, it doesn’t sound bad written down but it is.

I rang the department and asked for them to admit him and administer IV. He’s had cannulas before and isn’t anywhere near as bad with them, but they said no and told me to “hold him down and be cruel to be kind”

DS1 thinks he’s being tortured. All day today he’s hid in a corner, bit me, kicked me, and his speech which has been coming on was replaced by screams all day. He’s cried constantly and gestured for me to go away even when not giving the medicine. he won’t let me, his dad, my mum or my dad anywhere near him and has had what was effectively an all day meltdown.

Am I wrong for thinking they should just admit him and treat him?! Autistic kids don’t respond the way NT kids do. Any advice would be lovely :(

Can you get a dose in him while he's asleep? Put it in a calpol syringe and dribble it down the inside of his cheek.

You CAN make him do it you just don’t see the need.

As I said, other health professionals have also found him unable to pin down. You’re welcome to attempt it, if you wish. It’s great to hear I’m clearly just not trying enough.

Would it be worth asking about an ear spray instead?

I had a persistent ear infection a while ago. The tablets didn't work so then I had Otomize which has steroids and antibiotics. That link says it's suitable for children over 2 and doesn't mention grommets as a contraindication.

ohthatiswhy

Matching flavours sounds like a brilliant idea. I’ll try that.

I understand I really do I have a 16yr old DS who is autistic. But whilst it seems the better he cant be hospitslised every time he needs antibiotics its something you have to do. Mine had had various fears over the years one of the worst was the dentist. Then 3 years ago he knocked out his front tooth. Loads of visits later having to go to the dental hospital for gas and air for it fixed and me physically pinning him he was shaking so bad we can now actually go to the dentist if it comes out and needs a repair.
My point is you are not being cruel to be kind its something he has to have and whilst I agree with adaptations for autistic children to make things easier there will be times even as an adult he will need antibiotics and it wont be any easier for him to deal with then.

Aspie DD ended up in hospital at a similar age with a fever that we just couldn't get down. They tried to cannulate her... it was a disaster. Two doctors tried and failed. Nothing would calm her down. She was utterly hysterical. Luckily her fever broke and they gave up on the idea. It left her with an intense phobia of blood which took years to get over, and an intense phobia of needles which she still has.

However difficult it is, I think oral abx may be the better bet. How would you stop him trying to rip out the cannula (which is often very uncomfortable once it's in, let alone the process of getting it in)?

An ear spray might be worth asking about.

Something this thread is highlighting to me is there seems to be a gap in the drugs market for a type of delivery of antibiotics (or pain relief) for autistic and sensory disabled people.

I’m not a chemist, but I’m surprised they can’t come up with a powder to be mixed into their food? Or a chewy gummy like a multivitamin (he takes those!)?

Because it seems to me no one has considered how the type of medicine (liquid) affects autistic kids, and to a lesser extent autistic adults.

Aspie DD ended up in hospital at a similar age with a fever that we just couldn't get down. They tried to cannulate her... it was a disaster. Two doctors tried and failed. Nothing would calm her down. She was utterly hysterical. Luckily her fever broke and they gave up on the idea. It left her with an intense phobia of blood which took years to get over, and an intense phobia of needles which she still has.

This actually happened to me as a child (I’m an aspie myself), and it led to me having to be knocked out for blood tests for a long time. I still have to have a butterfly needle and sometimes the cream, and it’s only since having kids I’ve been able to not need diazepam for bloods.

DS has had cannulas before and is less bothered by them than I ever was though, and his reaction to this reminds me of my reaction to needles, which is why I was wondering if IV would be a better approach in this instance.

DS was an enormous 3 year old (99th centile+) with suspected autism.

He too hated taking medication. A 2-person wrap in a large bath sheet, done quickly and very, very firmly, was effective, combined with syringe.

He did respond very well to the 'this is nasty but it makes you better' logical consequences approach - we wrapped him he hated it, we fed him medicine, he felt better, he resisted less next time and so on. He would NEVER have consented to hiding medicine in food, and as he was picky about food anyway, with only certain 'trusted food providers', losing his trust wasn't worth it.

MrSpock you are having a difficult time with this particular course of meds. Go stealth with these and then start with the other suggestions, playing with plastic syringes etc no medicine involved.

It is a life skill that can be learnt but it’s difficult to do in the middle of an illness. Some great suggestions for the future. Sneak this lot in then gradually practice for future meds.

My point is that it doesn't matter about the asd or how big he is (experience of this myself) but rather that it took you an hour which was surely only heightening the stress as opposed to holding him down for a few seconds. And yes I do know how strong he is but you are 2 adults. Come on.

I've a severely Autistic child who has Epilepsy.... We have to medicate him 3 times per day !!!!! It can be done...you just need to be smart! DS Now has a gastrostomy!

Ha ha ha just hold him down and do it, my arse.

My ds was so hysterical he would vomit everything back up. Tried hiding it in food, drinks, even syringing it into juice cartons. So plenty of times he just went without AB.

He's older now and understands how medicine works so isn't a problem.

When he was 3, no chance.

OP is he's getting better anyway just do what you can.

Poor child

I needed a lot of ABs when I was little and I refused them too. A district nurse used to come to the house and give me an injection in my bottom. It wasn't pleasant but it was quick. Can't they do that nowadays or does it have to be intravenously?

I totally agree with zzzzz. In that it is important to help him learn to be able to take medicine, however you might have more issues right now with him now avoiding his bottles too.

If you think you do need to continue the antibiotics: one trick my mother (ex-paediatric nurse ) taught me, was along with the swaddle (which can help in sensory needs in some children) and using a syringe down side of the inside of the cheek, was also to stroke the throat as this causes an automatic swallow reflex. It might take two of you working together initially, but gradually building up to being able to do it alone. It is important to keep a calm and relaxed manner and it can be good to have an immediate treat afterwards (even dairy-free chocolate helps take the taste away!)

If you decide not to continue with the antibiotics this time, do work on the medicine administering as zzzzz suggested. It is very hard when you have anxiety and meltdowns going on too.

I hope your son gets better from this ear infection soon.

(I don't mean a nurse coming to your house, but an injection in the bum)

It is a life skill that can be learnt but it’s difficult to do in the middle of an illness. Some great suggestions for the future. Sneak this lot in then gradually practice for future meds.

Yeah I’m planning on getting him used to seeing syringes and giving me “medicine” with them. He’s seen me inject myself with clexane before so he has seen medication and medical equipment, he’s always been curious about it and I’ve explained what it’s for, to try and avoid this.

My dd used to puke every time she had Calpol etc.
I had to use suppositories a few times (febrile convulsion sufferer) and the the Consultant said ‘why don’t you just give 2.5ml of 6+ Calpol instead of 10 ml of baby Calpol. Doh!
She took tablets and capsules from about 4 (but is nt) - would he take a tablet?
I’m so sorry is such a struggle

No magic solutions but I remember how hard it was to get medicine into my NT 3 year old we too had to pin her down to make her take it. I can only imagine how much harder it must be with a child with SEN.
There is some good advice on here OP (along with the usual crap to be ignored) I hope you find something that works for your DS tomorrow.

I asked for tablets because I think I could coax him to take one, but they refused claiming it’s a hazard.

Can you get tablet antibiotics and crush them completely and hide in food that way?

cross post OP!! I would def try that!! good luck!

Would they give you suppositories? - sounds worse but we actually found it much easier for both paracetamol and antibiotics in medicine refusing DS1
I sympathise - It is a nightmare as once they have built it up as something they don't want its a battle for all concerned
Good luck

You need to give it him through the night in his sleep instead of through the day, in a sleepy state a little drip in his mouth till it’s all gone, I’d wait till he is really properly asleep, early hours of the morning job.