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 :(

I have a child with ASD and also used to work in A&E for 20 years.

My great own kid hated medicine and kicked off and I dealt with a lot of kids that hated it and kicked off. It’s actually really easily dealt with with one exception - the parents.

The technique is really tight swaddling and the trick is speed, absolutely no fucking around, quick as in regards to restraining. If you swaddle correctly, and I would recommend a light weight blanket folded to correct size (like the hospital cotton blankets) there is no way they can move arms, legs or head. So they can’t thrash head around to bite you or bang themselves on the ground as the swaddle has immobilised the neck area also. Then syringe slowly into the side of the cheek around the molar area with head back slightly so their swallow reflex activates rather than choking.

We could do this at lightning speed so the child was more dazed and perplexed wondering what the hell was going on before having the chance to truly kick off and even if they started early with 2 people who know what they are doing swaddling and dosing is still very quick. Leading to less trauma for the child,

Something changed over the years and parents went cuckoo. Instead of a quivk and easy method parents would spend god knows how long trying to talk to their child about it to get ‘agreement’, resulting in hysteria and refusal and a complete 3 ring circus ending with prolonged trauma for the child. There is virtually never a problem child in this regard but boy, plenty of problem parents.

No idea how great own kid got there?? Own kid.

Yep, autistic children do learn to repeat behaviours that enable them to avoid anxiety.
Yes of course. I'm sure OP's DS will be thinking 'aha, if I kick and scream and fight back they stop. Must remember that for next time'. So much more likely than it being DS going into automatic fight or flight mode in an autistic panic....

I appreciate that techniques like swaddling or three adults all piling on top might be 'useful' when it's a life or death matter, but the thought of inflicting them on someone when it's not (which it obviously isn't here) is utterly horrendous. Can you not image the overwhelming feelings of terror that you're subjecting someone to here? Feelings that will be even worse for someone whose autism requires them to be in control of their life at all times? If you tried doing that to me not only would my anxiety be 100 times worse at that point but at all points afterwards.

I appreciate that techniques like swaddling or three adults all piling on top might be 'useful' when it's a life or death matter, but the thought of inflicting them on someone when it's not (which it obviously isn't here) is utterly horrendous.

Exactly. It seems as if the benefits aren’t going to outweigh the trauma to him. I can remember being three and held down as they tried to cannulate me, and screaming and rolling away trying to hide my arms. They missed. Again and again.

It was awful and led me to develop issues with control. It used to take 40 minutes to take blood from me because I would have flashbacks and start screaming and kicking the HCPs, to the extent that one HCP at my surgery still won’t treat me even as an adult.

It really is terrifying for autistics. It’s probably terrifying for anyone, but for us, it’s so much worse.

Cannulation is a longer process though. I would only agree to pinning down for my son for cannulation in life or death situations. He has sedative meds for cannulation generally.

Which would beg the question why you thought the need for cannukation was the way forward!

Things like that are very much best saved for when there is no other option because of the risk of trauma!

Which would beg the question why you thought the need for cannukation was the way forward!

Because he’s had that before and wasn’t that upset by it. Therefore I thought it the lesser of the two.

But that doesn’t mean he wouldn’t get upset this time, it only takes one “bad” experience to swing that pendulum which is why it should only be risked when needed.

As I said earlier ds was fine with such things until one bad experience and then it created massive issues.

I think what Hopping is trying to say is that speed is the key. Swaddle for safety then quickly insert the medicine. If you are quick the child hasn't time to react.

The problem is many parents are frightened of hurting their child and aren't able to deal with the situation quickly.

Cannulas come with the risk of infection and veins becoming smaller and retracted.

Massive sympathy! My dd (then 6, not diagnosed with anything but anxiety, but possible mild asd), had to have eye drops for conjunctivitis and it was really a matter of having to physically pin her down and force her eyelids apart, which sounds horrible and was pretty traumatic for all concerned. Pretty sure she didn't get the full dose sometimes but it did clear up in the end. I think if he's not got temperature any more, I'd be tempted just to monitor rather than force the issue.

Not sure if this may help anyone (probably not OP, sorry), when I had to take long term antibiotics as a child, my mum got pill ones and crushed them up into a teaspoon of peanut butter. It worked, to an extent (still remember it tasting bad though!) and avoids dairy allergens (could try chocolate spread instead or jam maybe, too).

But that doesn’t mean he wouldn’t get upset this time, it only takes one “bad” experience to swing that pendulum which is why it should only be risked when needed.

This is true, and it has happened to me in that one bad hospital experience can then create a fear even when the others have been positive.

I don’t know why we were given antibiotics really, considering most ear infections are viral anyway. I had assumed it must be necessary if we were given them hence me asking for IV, however it appears we were given them more as a just in case.

(Prior to the pinning down stage with DD I'd tried choc buttons to distract, bribes with new toys, distracting with tv/ipad, explaining about contagion and how the itchy gunk would go away if she had eyedrops, etc- unfortunately with sensory defensiveness in children it's not something they can rationally control so wish people would not act as though it is!)

Hopping - we have had some appalling treatment from a minority of healthcare professionals, who have not listened to us, or worked with us wrt ds's medical care.

Many hospitals now have learning disability liason nurses, and hospital passports, in a move to supporting people with complex needs more effectively. In talking to the nurse at one of ds's hospitals, one of the most important things is working with and listening to parent's.

If anyone is interested please sign this petition calling for mandatory training in learning disabilities/autism, which was started by a mother who lost her 18 year old son.

petition.parliament.uk/petitions/221033

www.bristolpost.co.uk/news/bristol-news/grieving-mum-launches-petition-new-1656977

hazeyjane

Thank you! DP and I were saying we wish more hospital staff had experience in dealing with autism, because obviously autistic people are going to need to access medical services and it would make it less upsetting.

Will sign.

hazeyjane - yes, I’m also a parent of one with ASD and one with complex physical disabilities so between them I do have experience as a parent of kids who have had many many hospital admissions or has issues making treatment difficult. I would always encourage a parent to advocate for their child. I would also put forward that while a parent knows their child best that does not automatically mean that they know best in every single situation.

Have you had any success? If these varied "sneaky" or "bargaining" strategies are not having success, I would go back to the Dr to see if he really needs the AB before resorting to brutal force, which is traumatic on everyone and has long term consequences to his behaviour.

If the AB are for an ear infection, recent research has shown AB do little, if anything, to the recovery time... so I would negotiate with Dr that perhaps waiting another 3 days to see if temps resolve, allow the situation to calm down, then reconsider whether they are absolutely necessary or not.

Many AB solutions are a powder that pharmacists mix up, so not sure how much success you could get finding one agreeable to administering it as a powder - not sure how that would be delivered either.

And lastly FWIW I have a brute strength option that worked on my stubborn child, it may or may not be of use now or later. I call the inverted jesus pose, lie their head between your thighs, arms trapped under the top of your legs - using your strong leg muscles against their arm is usually quite successful. Then your hands are free to administer meds into their (screaming) mouth, legs can kick, but shouldn't be able to kick you, they can't turn their body or their head. You can explain the process, keep eye contact and be kind in administering it, as they have to have it, and this keeps them (and you safe). You may need help getting them to the floor if you are pregnant and they are strong.

Obviously it brings trust issues when you choose the brute force way, but might be a better hold than some others if something absolutely needs to be done.

Amazingly, there are multiple reasons why I’m thinking the medication isn’t suitable. Combined, I think it’s better to not administer them.

Sorry if this had been mentioned already but will Dr swap the standard sugar-free amoxicillin for the sugary one? it's much nicer

OP, can you call the HCP who prescribed the tablets and state that you absolutely cannot get them into your child, and on that basis what your next course of action is? Or just go back to A&E?

I am totally shocked by some answers. I could not hold my DD down aged 6 and get antibiotics into her (later diagnosed with ASD). I tried the towel, I tried everything. Even with a medicine syringe, she could immediately spit it out - even the methods HCPs told me were foolproof. If you have a child with limited food options and sensory issues who will absolutely know if you've added something to their food, you also risk limiting their diet further.

Even without a sniff of ASD dx, I was told after trying over a period of 8 hours to take my DD to A&E immediately. They were concerned about sepsis and was given a drip pretty quickly.

We had time then to practice with capsules so the next time she needed ABs we were ok. The GP now knows to only give us capsules (again, agreed well before dx).

You know your child and if you cannot get the ABs in you need to find out what the other options are and if his health is at risk.

Please feel free to pm me, because frankly some of the answers on here are insane.

MrSpock, I'm a vet and have spent twenty years administering unwanted medication to my patients, most of whom are strong enough to seriously injure me and none of whom can be reasoned with.
I also send clients home with medication to administer themselves and I always make sure that they will realistically be able to do it. I'm very happy to devise methods of administering drugs and to advise on restraint techniques, or schedule daily visits for us to give the meds if people are struggling.
I would much prefer that clients who are battling would call me so that I can make a plan for them, rather than despairing at home or getting hurt or terrorising their animal.
Have you tried getting back in touch with the prescribing physician?

I feel you pain! Trying to medicate my son is like medicating a cat, complete with hissing and spitting. I agree they need better systems in place for giving autistic children medications. I don’t think people realise just how impossible it is, it’s not like a neurotypical child refusing meds