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 :(

In fairness most ear infections are viral and will resolve themselves in 5-7 days anyway (see NHS choices re this) so maybe discuss this with the doctor and manage his symptoms like pain instead?

There is so much antibiotic resistance that it’s not appropriate to just slap people on IVs. They wipe out all of your good bacteria too and there’s much more chance of nasty side effects like vomiting, diarrhoea and thrush infection.

Is there no suppository ones your ds could have? Would he tolerate less?

Thank you everyone. DS1 has woke up in a better mood, still a bit unsettled but less so than yesterday. I think we are going to not give the antibiotics as he seems well, his temperature is gone.

However there’s some great ideas on here, and I’m going to try the dairy free chocolate icecream and get him some plastic syringes to play with, to hopefully make it easier if this happens again.

Is there no suppository ones your ds could have? Would he tolerate less?

I think he’d tolerate those ones far more, and next time I’ll enquire about those because anything is worth a try!

there will be times even as an adult he will need antibiotics and it wont be any easier for him to deal with then
Except as an adult he may well have a better understanding of why they're needed and will also be able to control the process himself which makes a difference.
I'm autistic and the only way I can swallow any type of pills (even tiny ones) is in yogurt because the texture means it's just swallowing and no chewing. But even then there's no guarantee. As soon as my tongue touches the pill and my brain registers it's there then it's a huge issue. I always request liquid if possible (luckily rarely need medicine)

Except as an adult he may well have a better understanding of why they're needed and will also be able to control the process himself which makes a difference.

This makes a difference to me too. If I know why I have to do something, I can rationalise it and even though it’s unpleasant, it’s possible. If someone just tries to force something on me, my response is to fight back.

I have texture issues with sauces still. Almost all my food has to be dry otherwise I can’t swallow it

My DS is also a mess refuser. I suspect he has sensory issues and is in the spectrum, waiting for referral. DS is 6 now and always refused from as soon as he was mobile. If we managed to fire some calpol or antibiotics in, he would swallow then scream and cry so much he would throw it up and then foam at the mouth.

I've got use to the patronising comments from other parents, relatives without kids, and medics. Similar to others on this post. if it was that simple, we wouldn't have these issues and be so scared for our children.

I have had success over the last 18 months, and maybe this is something you could try when your DS is ready. Gelatine capsules, swallowed with food. Chew a favourite food, biscuit, toast etc and just before swallowing, teach him to put the capsule in and swallow. Eat the rest of the biscuit as a reward!

You can buy empty capsules from health food stores online. You can then give a consistent experience, same colour, same size each time. Always ask for a capsule or tablet from drs and tell them you will crush it up. My GP now prescribes anti biotics in the fewest doses per day and the smallest tablets. It took 3 years but my GP finally gets it!

Is there discharge from his ears.? When my son had grommets and ear infections he was prescribed an ear spray. The grommets should be doing their job in providing a way out for the fluid and the spray was to prevent outer ear infection developing. Additionally if there is discharge a swab can be taken to make sure it is the right antibiotic so you are not messing about with the wrong one.

There’s no discharge. His ears were red and he was pulling them.

I haven't RTFT but if I were you OP, I think I'd consider if it was easier to forget the antibiotics and just monitor your DS, let him rest and calm down a little. I'd just pray the infection gets better on its own without the trauma of trying to administer antibiotics.

I’ve written several posts that I’ve lost but in brief autistic toddlers grow into autistic children and expecting a child to go through childhood never needing any medicine is silly. Do you want him to never receive pain relief? What if he (like many autistics) needs medication to sleep or has a restricted diet that requires supplements or stool softener?

Who has stated they expect him to never receive medicine? Really, who has said that? Certainly not me, so wind your neck in.

I have a clearly autistic teen and while I can see everyone is trying to save your feelings I personally feel it’s your child who will suffer for your lack of determination to see this through. Don’t stop antibiotics halfway through. Surely you understand this is WHY they are becoming ever less effective.

I understand that, thanks. I’ve been to university, I’ve studied law, I’m not a fucking idiot. Don’t talk to me like one. I’m not prepared to torture my DS1 for the “greater good” when he clearly doesn’t actually need the medicine. I had that done to me as a child and it led to long term issues.

Ask your GP or HV for training if you really can’t hold a three year old.

Ask your mother for lessons on how to communicate and empathy, as you clearly lack both and weren’t taught them.

Do you think the behaviour you are seeing could be because he is distressed because of the ear infection rather than just because of being upset just because of the antibiotics.
My son is 13 and has asd and sld. His behaviour is always like this when he is unwell and particularly so with ear infections. We have to pin him down to get him to do things including sometimes with medications and he has regular medications when he is not ill that he makes no fuss about at all.

my mother raised a large family in difficult circumstances, I would imagine her “communication” about a three year old with an ear infection given half a course of antibiotics andno pain relief because his mother feels that is “kinder” would be extremely direct. Poor child.

Ah, one of the old school “do as I say” borderline child abuse types. Your posts make so much more sense now.

Do you think the behaviour you are seeing could be because he is distressed because of the ear infection rather than just because of being upset just because of the antibiotics.

I wondered that, but his aversion to medicines is there all the time. He hates calpol and ibuprofen too. He refused calpol after his surgery and was back to normal straight away, nothing usually bothers him. He’s quite robust. The nurses on the ward were surprised because not kids apparently just lie there and accept the pain relief, within an hour of recovery DS was running around and playing and refused any medicine.

Most*

My DD used to be like this, literally taking an hour for two of us to catch her, hold her down and squirt in in her mouth, which she'd then spit out.
I have quite an endearing memory of my DH shouting "The power of Christ compels you!" as it was like something out of the Exorcist...

We got around it by being prescribed a more concentrated version of amoxicillin, so less of it less often.

I’d explore the “giving medicine to Daddy” route. If he tried to give it to Dad and dad wouldn’t have it, why would he? Find something he can give to his dad by syringe and then dad can give him his.

I think the idea of admitting a child to hospital when they don’t need it is ludicrous really and very much at risk of creating a much bigger problem.

We have gone through the meds refusal with ds in the past (8 year old, autisic amongst other things) but we have had to work hard to persevere - good job as he now has 16 different prescribed medications!

He was always fine with hospitals etc until the time he needed a long line in, taking that out distressed him massively and procedures that would have normally been fine became a major issue - and this is what you risk by taking him into hospital when not needed. It has taken a lot of work by me and play specialists to get that confidence back to a level where with support a blood test is no longer a major issue for him, when he was there he would happily watch them taking blood!

Three not there

Unless you have an autistic child with these sort of sensory behaviours then you really need to stfu with your judgements.
My nana raised 10 kids in difficult circumstances, some autistic (we can see this now) and yes she would have managed this by beating them till they complied as was the method of the day. Doesnt make it ok.

If he tried to give it to Dad and dad wouldn’t have it, why would he? Find something he can give to his dad by syringe and then dad can give him his.

I think he might like this because he likes “caring” for people. He tells us to lie on the floor and pretends to put us to bed, pretends to feed us at dinner time and things like that.

Unless you have an autistic child with these sort of sensory behaviours then you really need to stfu with your judgements.

I can’t stand people who think you just need to discipline them. My mum used to get those comments about me because I was a fussy eater. They didn’t understand I had texture issues and that the wrong foods would cause a panic attack and repeated vomiting.

People don’t understand that these things are terrifying for autistics.

I think that some of the parents of autistic children on here who are saying ever-so-helpful things like 'I pinned my child down and forced them and now they beg to be force-fed pills' are forgetting that autism is a spectrum. If OP knows that her DS is going to react better to doing things a certain way then surely people can accept that just because their experience is different it doesn't follow that the OP is wrong and should be doing it their way instead. I don't expect every autistic adult to swallow pills with yogurt just because I do; I get that some might not manage yogurt at all while being capable of dry-swallowing a pill the size of a gold ball.