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 :(

Is this a children s hospital? They sound really crap. They should know that sometimes you need to find ways around doing things with children and you need to adapt to the situation. Refusing to give you tablets and refusing to think of another way to help, e.g. injections, seems very inflexible and has ended up causing your DS a lot of distress. Sorry I don’t have any practical suggestions but the medical team have let you down. Maybe PALS could help you spur them into working with you with some flexibility.

My DS has autism and we can’t hide anything in food. At one point (he’s 4) he would only eat things we had opened in front of him so he knew it hadn’t been ‘tampered’ with (I used to try to hide vitamins I his yoghurt). He takes Melatonin at night and to begin with wasn’t happy about it. We used the towel swaddle trick, squirted it in, and followed with a sweet / favourite drink. He will now take it willingly without any lasting distress. He needs it - he gets it, persistence is key. Still working on teeth brushing mind

It’s a normal hospital but a children’s ward.

They’re crap tbh. They were crap when I had DS, crap when I had losses and crap now. There have been two occasions I’ve consodered suing as they’ve been outright negligent.

However, I don’t drive, and it’s the nearest hospital on the train line. So while I ensure our planned hospital visits are at a different hospital, emergencies have to go there. :(

This won't always be possible but I would say an ear infection doesn't always require antibiotics. In this case I would leave it if it's distressing. It's probably not realistic to expect IVs.

It’s horrendous l. I understand.

Anytime they would prescribe this I would say to the doctor ‘that is 21 wrestling match fights for me this week so’ and ask them for a once a day antibiotic.

I wish WISH wish they would make suppository antibiotics for under 5s.

It shouldn't be necessary to admit him to give IV antibiotics, with all the expense and bedblocking that would entail. For an adult, at least, IV antibiotics are often given as an outpatient. It means attending multiple times but maybe that would be preferable to this. I think a lot of posters (and the hospital, from the sounds of it) are not very knowledgeable about the specific issues of autism - it's not just about being firm ffs. It's a shame he's still being assessed. If he already had a formal diagnosis I think they would have to be prepared to think outside the box a bit more.

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.

Your child is 3. Even if they are the size of an 8 year old they should be fairly easy to pin down. You are 16 weeks pregnant? So your partner needs to get him on his back, kneel over his chest and pin his arms to his sides with his thighs. You can then squirt the medicine in from above your child's head so you are away from flying legs etc. The longer you take to do it the more traumatic it will be for all of you, just crack on with it. If he needs medicine he needs medicine!

It's a shame he's still being assessed. If he already had a formal diagnosis I think they would have to be prepared to think outside the box a bit more.

I’ve found this a lot.

We are very certain DS1 is autistic. I am an aspie with ADHD and DP has ADHD. These conditions tend to be genetic so obviously DS1 showing these behaviours, is autistic. But hardly anyone takes us seriously because he isn’t fully diagnosed.

Your child is 3. Even if they are the size of an 8 year old they should be fairly easy to pin down.

Have you ever dealt with an autistic child? It can take three adults to get him into the car seat in my mothers car. He is willing to hurt himself in order to escape situations, and will bite his skin until he bleeds, bang his head on the floor, bite us, smack us, spit at us, claw at his skin...

I sympathise. My child doesn’t have autism but he is extremely stubborn and strong willed. He’s always been bad with antibiotics but it once took 3 different types to complete a full course, and even then I think half of it ended up spat out. I went back to the GP as the first then second lot was making him sick and he said ‘is it the medicine making him sick or is he just making himself sick?’. To me it didn’t make much difference as the end outcome was the same, he wasn’t getting a full dose.

I tried lots of the tricks here but he could taste it in yogurt and drinks and he is incredibly strong. It sounds stupid but I really can’t hold him and control him while trying to administer medicine.

Have you ever dealt with an autistic child? It can take three adults to get him into the car seat in my mothers car. He is willing to hurt himself in order to escape situations, and will bite his skin until he bleeds, bang his head on the floor, bite us, smack us, spit at us, claw at his skin...

Yes I have actually. Car seats are tricky admittedly but I just can't comprehend how it can take 2 adults over an hour to restrain a 3 year old, particularly when autistic adult men can be restrained by just 3 adults very effectively.

I tried lots of the tricks here but he could taste it in yogurt and drinks and he is incredibly strong. It sounds stupid but I really can’t hold him and control him while trying to administer medicine.

Exactly. When they are insistent, it’s incredibly difficult to hold them down. Sorry you also had this, it’s hard.

*FruitCider’ my child is 4 and as stupid as it sounds he is so strong he can overpower me.

*Yes I have actually. Car seats are tricky admittedly but I just can't comprehend how it can take 2 adults over an hour to restrain a 3 year old, particularly when autistic adult men can be restrained by just 3 adults very effectively.

Even the hospital couldn’t hold him down to record obs after surgery. They discharged him without his observations being complete because he was “uncooperative”, which meant he would kick, bite and hide to the extent no one could hold him for long enough.

So it isn’t just me who thinks he’s difficult to hold.

FruitCider’ my child is 4 and as stupid as it sounds he is so strong he can overpower me

Children don't have as much muscle mass as adults. It's very likely to be ineffective technique, as you don't need to be strong to restrain someone quite a bit bigger than you.

my child is 4 and as stupid as it sounds he is so strong he can overpower me.

I actually get comments from his nursery workers that he’s much stronger than other kids his age. I can believe it too. He’s incredibly strong, which makes it difficult when situations like these occur.

Even the hospital couldn’t hold him down to record obs after surgery.

I'm pretty sure adult/children's nursing do not have restraint training so that would probably be why.

I'm pretty sure adult/children's nursing do not have restraint training so that would probably be why.

I’m fairly sure short of actually tying him down, he would either just harm himself or attack the individual holding him. It’s very stressful.

Another suggestion, maybe go and talk to the chemist and ask if there are any options for delivery, so tablets, powder, v concentrated liquid, suppository etc. If the first chemist isnt helpful, go and try another one at another shop. You might eventually find one who actually understands what you are going through and can compound a special mix for you. Then ask for all prescriptions to be sent there in the future.

I know that they can vary the method of delivery for the elderly, people with narrow tracheas, people with gastric issues etc

Can you try dream feeding it to him while he's asleep? You could get two doses a day done that way and only have to fight for one unless he also takes a nap?

Why cant they just do an antibiotic injection like they do with dogs and cats. Its over so quickly. They insist on traumatising children. I think you need to insist. Spell it out to them that he will not consent to it and they need to give him an injection.

My son who I wrote about earlier had to be restrained in hospital for them to give him a GA, there were six of us holding him down quite unsuccessfully until the meds were in and his eyes rolled back. They gave him amnesia drugs in his cannula so that he wouldn’t remember the trauma. It was truly truly horrific. It happened that way because they didn’t listen to me about his reactions. A terrified child is very strong. The anaesthetist came to the ward afterwards to apologise about how wrong it went.

Which is why it is important to tackle the meds thing calm and collected. Have him restrained before the meltdown has kicked in. It can be fine but you do have to resolute. There is no ‘gently gently’ you just have to do it. It takes seconds to restrain a child.. if you are clear in your plan of action.

God there are some unhelpful people here!

Op we have had more luck in the past with crushing tablets (where this is a possibility).

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

We have managed to get support from learning disability team for long term support re med administration.

It has been a bloody hard road though, and has been years of difficulties (still ongoing!) not the simple solution some seem to suggest here.

Good luck and keep working on it.

I can try doing it while he is asleep.

Branleuse I agree. The hospital witnessed it as he wouldn’t take calpol. They held him down and he made himself sick, so they did it to him again and he started headbanging and attacking them.

I’m fairly sure short of actually tying him down, he would either just harm himself or attack the individual holding him. It’s very stressful.

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.