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 :(

For future in the longer term, try to build a relationship with pharmacy and gp wrt childs difficulties and they may help

This is also a good idea. Thanks. Sorry you’ve experienced similar

Can you mix with Ribena syrup?

How could he attack or harm himself if his arms and legs were out of action? The only thing he could do is bite - so don't put fingers in his mouth or limbs close enough to his mouth. Heads should also be supported so head butting the floor wouldn't be an option either. It sounds like you could do with some guidance on how to safely restrain your son, I think you would feel far less stressed if you could, and feel far less worried about having to try and restrain him in the first place.

Because he can usually lift his arms out of whatever hold we use after a certain amount of time and we have to grab them again, but during the time they’re free he can hurt himself and us. Same with legs. We put a towel folded under his head but I still don’t like him head banging against it.

This may sound a bit patronising but have you tried mixing it with lemonade, putting the lemonade back in the can and then giving to to him with a straw? My eldest hates medicine and is very willful. Most of the time giving him straight medicine would involve holding him down and forcing it in his mouth only for his to spit it out/throw up. We tried mixing it with yoghurt etc but he's clever enough to be able to tell when food doesn't taste right. Fizzy drinks on the other hand are so synthetic in taste that medicine doesn't seem untoward. The thing that really gets to me is that the little bastard will happily take fruity fish oil but not a tiny bit of medicine in syrup.

That sounds so hard op. My 3 year old (NT) refuses antibiotics and pinning her down to get them into her was so distressing, for her and me both. It's a terrible thing to have to do to your own child.

I hope some of the tips on here work for you. Your poor boy. And sympathy to you and your family.

racecarddiver I hadn’t thought of that, actually. I’ll try it!

Thank you to everyone who has wished DS a quick recovery I appreciate it!

Haven't read all the replies but you can get amoxicillin prescribed as suppositories. We use them on the continent all the time

You're going to have to work out a strategy for this. Admission should be a last resort in any circs and is totally inappropriate here. A cannula increases the risks to your son, some iv antibiotics can be very sore going in and any admission will require frequent obs doing which he can't tolerate. Plus you've got the standard infection risks both to him and to you as you're pregnant.
The hospital should have a learning disabilities nurse. Contact them and see if they can help with advice for strategy.
Also - don't ever try something for two hours. Try it, it works then great, it doesn't work, stop and regroup. Continually trying something that isn't working just gets everybody in to a very negative frame of mind. That's general parenting advice btw but it applies especially to kids who aren't NT.

@MRSpock I really hope it works. Sometime coke or Fanta is better than plain lemonade.

I am aspie and so are my kids and i think if he is this distressed then they have to find another way. You cant just force him in that state to that extent. He is a person. He has dignity, you will ruin trust. I know everyone means well, but you can tell them he is awaiting assessment for autism and to please treat him appropriately with regards to this

FruitCider - effective restraint isn't going to help prevent the kicking/biting/hitting/ self-harm after the dose has (hopefully) been given.

OP, I think you need some good quality professional support with your DS (which you may the battle of all battles to get) if he'll self-harm to escape now, you're likely to face to major issues in the future.

I totally get you OP, two of mine were the same. One with ASD the other NT. I often pleaded for him to be taken in for IV antibiotics as we always had to abandon taking them. I have 6 children so knew every trick to get antibiotics into kids, my ASD son never took calpol he always asked for a paracetamol suppository as that was preferable to oral meds. Other mothers just don't 'get'this'. My family thought it was awful I'd give him suppositories. It did ease around 8 years old when he got a tooth abscess, I was able to bribe him with expensive lego to take a full week's antibiotic. Since then he has been able to take tablets, so much easier for him. I really feel for both of you, it's so difficult.

He is a person. He has dignity, you will ruin trust. I know everyone means well, but you can tell them he is awaiting assessment for autism and to please treat him appropriately with regards to this

I think this too. I remember how much I hated similar scenarios as a child and how I felt utterly let down by those around me. I don’t want DS feeling like this.

Very few staff take it seriously when I mention his additional needs.

This is a long read but may be of use for the future OP. It describes how to desensitise a 3yr old child with ASD taking oral meds. Very gradual steps, built up over time, with a short explanation of what is happening each time to reduce anxiety.
www.ncbi.nlm.nih.gov/pmc/articles/PMC3120077/

If you use storyboards or a visual timetable like PECS you could use this to support too. Good luck.

If he’d drink a smoothie Asda’s black currant one literally disguises everything!

You cant just force him in that state to that extent. He is a person. He has dignity, you will ruin trust.

This is so well put. All the people telling you to just force him are forgetting that.

I had a nurse tell me once (when DS was refusing calpol), 'This isn't a democracy, Mum!' Well, maybe not, but we're not going for human rights violations either!

I have always had this with DD, 6 (NT). Mostly we haven’t given her anything but when she had a chest infection and absolutely had to take them, the GP prescribed tablets and we crushed them into jam. We told her the doctor had said she didn’t need medication but needed to eat more jammy toast. It worked. Maybe you could use the individual pots of jam that you can buy in Morrisons supermarket so you could “open them fresh” in front of him every time? Hope he feels better soon.

This sounds very traumatic for your son, my daughter is also being assessed for ASD, and is is so challenging getting meds into her, she also has glue ear and is on 3rdset of grommets so antibiotics pretty regularly at our house. I have no advice sorry it has been incredibly difficult, things have started to get better now she is older, she is 6.5, but if it's a taste she doesn't like it's nigh on impossible,we have ear drops at the moment and it's a battle every time.

For those of you advising restraint and restraint training - as parents of kids withASD we are advised against using restraint except in life threatening situations and we are refused restraint training as it is so easy to injure a child and leaves parents open to accusations of abuse if bruising occurs.

Also forcing children kicking and screaming destroys trust, for any child but especially one withASD trust is the main tool we have to calm our children and deescalate situations.

op, I really understand how challenging this is, and also how very little support there is for parents in our situation. My husband and I are undiagnosed but most certainly on the spectrum, which creates understanding of our girl but also has its own challenges.

My son with ASD had intravenous antis about 7. He was ok with blood tests before this. He found the liquid going in excruciatingly painful - we even tried waiting until he was asleep but he would wake up when the liquid started going in so it was obvious it genuinely hurt him. I had to hold him down during it. It was so bad the hospital ended up abandoning the second dose he needed 12hrs later to complete the course and gave him oral antis. Worse still as he was admitted to hospital to have it done - it triggered OCD in him that took years of treatment to resolve. Years later he now has a fear of blood tests he did not have before the treatment.
When you are sringing it in his mouth - are you putting it down the inside of his cheek between his cheek and teeth? Ie towards his back teeth? He won’t be able to taste it as much then or avoid swallowing it. Another option is through a straw as it reduces the taste due to avoiding some taste buds.,

OP, what autism specific strategies have you already tried to communicate what is going to happen to your DS and why?

Sorry forgot to mention - if your son was admitted for intravenous antis there is a chance he would need to stay overnight.

I completely get what you mean when it's physically difficult to restrain, my 4 year old is the same, it's not quite that he's stronger it's more that there's clicking to tell his limbs how much force he needs or limitations of his limbs.

It clicks for us, we think 'urgh that aches a bit I'll stop' Ds doesn't have that in any way, shape or form, it's similar in others with genetic disorders too.

Try smoothies if you've got anything like a blend active. Berry flavours hide the taste quite well!

*nothing clicking to tell

@Fruitcider

Where to parents go to learn the more effective techniques for pinning down their children who are probably autistic but not yet diagnosed.

I would have literally no idea where to go to learn effective restraint techniques but it sounds like you have had training. There is a lot of potential for it to go wrong I'd have thought - people occasionally die when being restrained by a police officer for instance. So I think its something you'd want to be taught properly rather than a youtube video.

You have my absolute sympathies, OP. DD1 (4) is in the middle of autism assessment, and it's horrendous when you can't get them to have something they need. She cut her head on a water slide on holiday a few months ago and had to be swaddled in a sheet to be examine and stitched. It was She is incredibly strong and when she's having a meltdown she's even stronger.

I hope the chocolate pot things work if you use them, or you get an alternative sorted.