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 :(

Have you tried taking him nack and asking them to show you how to do it (not because you don't know how to do it, but because it would demonstrate that it isn't possible)? That may make them keener on finding an alternative

Can you imagine the terror of being pinned down, wrapped in a blanket and force fed something you had absolutely no clue what it was for, or why the people you loved were doing this to you. Autistic children often have a reduced concept of hierarchy amongst people too and will not accept somebody elses authority over them, a heightened sense of anxiety, lack of social awareness, reduced ability to understand other peoples intentions, AND sensory issue around foods.

An NT child might well trust the world around them to a greater extent and be able to trust these doctors and these parents have their best interests at heart. For a young autistic , this is a whole different ballgame.

OPs child is struggling to swallow some medication.

Yes I know.

The reason why I linked to the article and petition is because the conversation about administering medication to a child with autism had led into a wider one about administering medication and ensuring best medical care for your child when they have learning disabilities/autism. Clearly there are differing opinions about this, but ultimately health care professionals do need to work with parents and with the children's needs in order to help them work out the best solutions for medical care.

This may mean a discussion about different treatments, different medications, play therapy and longer term support. The thing is each and every child and circumstance is different and one approach ('pin 'em down!!') does not necessarily work for all children (although that may be the best method for some).

Can't believe this debate is still raging and that people are still giving the OP such a hard time. @MrSpock On balance I would stop the antibiotics. Your son's temperature is down and in all probability the infection was viral in the first place. Posters lambasting you about antibiotic resistance (@zzzzz I'm looking at you) are out-of-date as well as short on empathy: www.bmj.com/content/358/bmj.j3418

Can you ask him why he doesn't want to take it and explain to him what's wrong with him and why he does need to. Perhaps swap for something else he doesn't like to do.

Just come to this thread and already at so many comments. My DS is 3 and autistic too OP, he's also prone to tonsillitis. I feel your pain.

As if explaining it to them will help... honestly...

As if explaining it to them will help... honestly...

So attempting to communicate isn't the answer..
Just doing it regardless of protests isn't the answer..

What do you suggest jamoncrumpets? Just letting a child with a terrible infection (not in this case hopefully) die?

if it was life or death, I assume theyd do the cannula like she originally asked for ffs.

Would another option be giving him laughing gas first?

My daughter will not let people do anything to her - last year she got the backs of her earrings embedded in her ear. She wouldnt even let me touch them, went mental. They needed removing. Eventually after some laughing gas she was calm enough and it was over quickly.

OP would have given the antibiotics if there was another way of doing it than using this sort of hideous force.

which we all know there is

@hazeyjane

Is the genetic condition you mentioned Fragile X Syndrome by chance?

Like I say, zzzzz, you're out-of-date, What you're quoting is from 2016. The new research, from mid-2017, is clear - if you read it all - that taking antibiotics past the point where they're needed is worse for antibiotic resistance than stopping them early. I mean, if you're going to give the OP medical advice, you're abreast of the latest research, I presume? What you do for your own children is your affair though.

NotAsGreen - no, not Fragile X. It's a real mouthful if a syndrome! There are many syndromes and genetic conditions that have features of autism.

Yes, zzzzz, I'm trying to help. That's why I'm on the thread.

The new message, in most cases, is 'Stop when you feel better', which OP's DS reportedly does. The research quoted is over a year old now and is filtering through to GPs at this point.

It sounds like you're not able to read the full BMJ article, so I'm guessing you're not medically qualified, which means you probably shouldn't be lecturing the OP to the contrary.

Here are some lay sources:
www.bsms.ac.uk/about/news/2017/07-26-complete-the-course-message-for-antibiotics-should-be-dropped.aspx
and:
www.ox.ac.uk/news/2017-07-27-it-time-drop-%E2%80%98complete-course%E2%80%99-message-antibiotics

You clearly think I'm being harsh on you, but you've been pretty mean to the OP, who posted looking for advice and support not an ill-informed telling off.

Op I work with children giving meds ect and have done for over 10years and your absolutely right there is a massive gap in the market re forms of meds for kids and preparations that they will take. The truth of the mater is kids don't make drugs companies money so unfortunately there is much push for it. There are also massive ethical issues in trialling things on kids so that makes it harder.

Being hospitalised for 5-7 isn't the answer cannulas may not be an issue now but they will be soon. It's likely to be multiple cannulas antibiotics that sting when being administered in a strange environment the list goes on. I see your initial thought process but it's not the answer.

Of course what your having to do now is also not ok. I think your right to see how he is if he is getting better then the best thing to do is to hold of and break the cycle of fear this this time. It will be an issue in the future though. You say he is still being assessed so I imagine access to support is limited at the moment. Obviously in the long term it's something to be worked on. My suggestion would be play with syringes when he is well and no pressure giving others 'medicine' ect and trying to get him to take juice water ect that way see if that helps at all. If that doesn't work ask for tablets sometimes a crushed up tablet is easier to hide than liquids as the liquids have a strong taste. Once the assessment is done hopefully you will have access to more support with better ideas than mine. It's a horrible and there isn't a good answer I'm afraid but your doing your best and that's all anyone can do

But yes if your stoping the course early I do agree it's best to let the gp know.

Oh I’ve been there. At 3 we had 8 staff members try to give oral meds, each more determined they could do it. The last, who we waited to come on shift, was a lady in her 50s who swore she always managed. She also got a face full of banana medication. The few times it went in it was vomited fast. Mainly we got by without blunt she was admitted once very ill, they also sedated her a bit.

Not really useful, but just to say you’re not alone.

Dd still drinks out a bottle at 6, and only one year. For those who imagine being tough works, we’ve tried. She can drop kg very fast and has existed on small amounts of pediasure and become very ill a few times. She’s had seizures when run down enough. The less intake, the worse she gets, until there’s no acknowledgement of you and your efforts at all

On and my dd is tiny (doesn’t eat!) but it’s still not easy, the gag reflex is quick and she can vomit at will.

I’m not sure why you would find it unusual that the majority of people haven’t heard this new guidance.

I don't find it unusual at all. But I'm not talking about 'the majority of people', I'm talking about you, and the fact that you made a special effort to take a distraught and desperate mumsnetter to task for lacking a full appreciation of the mechanisms of antibiotic resistance when it now transpires you don't understand it yourself. It was mean. At least own it.

How does it take 1 hour ??