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 :(

Nikephorus thank you. It is very important to remember all of us are different. I have no issue dry swallowing pills for example! But certain textures will make me vomit.

Each autistic person is individual and I really don’t think forcing my son in this case is going to do anything other than frighten him.

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

Even my amazing GP would be a bit wide eyed at being asked for advice in restraint techniques for a 3 year old! As for most Health Visitors, aiee.

Zzzzz, I'm not sure why you are taking such an abrupt tone with MrSpock, but it isn't going to help. Nowhere has the OP said they aren't going to work on longer term solutions wrt to medication.

We have to give Ds medications daily and he has had to have general anaesthetics, endoscopes, colonoscopies (oh my god, the prep for that gives me flashbacks!) nebulisers and oxygen. I'm not going to pretend any of it has been easy, and each circumstance presents itself with different difficulties (antihistamines as Ds's eyes close shut comes to mind) - but we have learnt a new trick each time, and each time we have tried to help ds understand why he needs the medicine/treatment, and tried to find ways to work with him, because he will need meds throughout his life and he needs an element of control in this.

Another thing we have learnt is ways to deal and work with those who are trying to help him. He has been undiagnosed until this year (he is 8) and trying to explain to medical professionals that he doesn't have autism, but does have a range of complex needs, including autistic tendencies, that all point to a genetic condition.....well it was a bit of a mouthful to explain this to every nurse and Dr that would see him within one A+E visit for example. So I printed out a sheet detailing his relevant needs and the professionals involved with him.

Ds has a diagnosis now , of a genetic condition which has associated autistic tendencies, and although we still have the printout of needs, it is definitely changes people's attitude when we say ds's overarching diagnosis (even though no one has ever heard of it!!)

At one hospital we attend they have a thing called a hospital passport for children with learning disabilities and additional needs - this hospital in particular have been fantastic when ds has needed procedures, dealing with his sensory issues and listening to us.

MN never ceases to amaze me with the dickishness of its posters.

I mean I can't imagine it could be that hard to restrain a 3 yo....but I am not stupid enough to believe that just because I can't imagine it, it can't be possible.

I'm really sorry OP that you are having to deal with shit posters on top of having to deal with getting medicine into a child that is prepared to do anything to stop you.

I watched 3 doctors trying to restrain my newborn baby in order to do a lumber puncture...after 45 mins they gave up. A nurse who came to take a blood sample the next day was utterly astonished she had to ask not just me but DH as well to help keep a newborn under control. Some kids just seem to know how to use their strength in a way we would never be prepared to do against them.

If it were me I would tell your soon the course is over and done, and you are all having (adulterated) lemonade to celebrate 3 times a day.....

Sorry.....that was a blimmin essay!

Oh another thing to try is the play specialists at hospital - although ds absolutely balks at this!!

FruitCider is right in the fact that you need to learn to restrain effectively if you are going to continue to go down the route of forcing him into taking his meds.

I know how strong young children can be when they are scared and determined but restraining a 3 year old can be done with one adult male (as you are pregnant) if you do it correctly and FruitCider's way of doing it will work. My husband had to restrain a strong 14 year old once so it can be done with a 3 year old but I understand that if you have never been shown how to do it properly it would be very difficult.

It is awful having to restrain for medication so you have my full sympathy OP.

I hope he gets better soon OP

It's not kind though, to leave autistic people without medicine, education, nutrition- or whatever else they may vigorously reject that is a basic requirement to a healthy life.

You haven't said yet what autism specific strategies you have tried to enable him to accept the medicine?

BTW at this point I think I would stop the antibiotics to stop him feeling more traumatised by it and then follow the advice of other posters about getting him used to the syringe slowly.

I know it is wrong to stop antibiotics half way through but I would take that over causing him more trauma right now

Hopefully suppository is an option for you. You can get pain relief like paracetamol by it too.

You haven't said yet what autism specific strategies you have tried to enable him to accept the medicine?

We’ve tried telling him before it happens, as DS hates change and usually if he knows, he can prepare.

We’ve tried cards (we have photos of him printed doing different things and we don’t have a medicine one but we tried using the drinking one and explaining it was a special drink) but he doesn’t use those much now as he has speech, they were used mainly when he wasn’t talking.

We’ve tried giving him the choice (you can have a syringe, a cup or a spoon, pick your favourite) and that usually works.

We’ve tried giving him a drink before, the medicine, then straight after, so that he won’t taste it. He just spits it into the drink.

We’ve tried pressure on his feet, which is his comfort thing. He likes his feet to be held tightly, so we’ve tried doing that and seeing if it calms him down but it doesn’t.

Literally nothing calms him with this.

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

So far though, OP has only suggested either not medicating her child or having someone else (the hospital) do it for her. Not giving the medication may work out OK this time, but what about next time when he really MUST have it, but has learned from this time that he can definitely avoid it if he kicks and bites enough.

BTW at this point I think I would stop the antibiotics to stop him feeling more traumatised by it and then follow the advice of other posters about getting him used to the syringe slowly.

That’s what I’m thinking, there’s no point repeatedly traumatising him when he’s fairly well, because it could make it worse when he really does need medicine.

I’m going to hopefully get him used to seeing syringes, and letting him play with a few.

but what about next time when he really MUST have it, but has learned from this time that he can definitely avoid it if he kicks and bites enough.

Autism isn’t a tantrum. Autistics don’t learn to have meltdowns in order to get out of doing something unpleasant.

Hugs, OP; I feel your pain. DD is autistic and takes melatonin for sleep, and at age 5 was prescribed iron supplements. It was an absolute fucking nightmare getting it into her, as the iron taste was so strong I couldn't hide it in anything. I know this won't help with the current situation, but it might be worth (when he's feeling better) having a go at teaching your DS to swallow tablets. With DD we started by teaching her to swallow with those tiny silver/gold balls for decorating cakes, then moved onto Tic Tacs, and she now (at age 10) fairly happily swallows a standard paracetamol tablet if needed. There's zero fuss now about swallowing her melatonin before bed, whereas previously the thought of trying to get any medication into her brought me out in a cold sweat. It took a while, but we got there in the end.

No, he may not be calm. But if you can explain to him why he needs it he may be less traumatised afterwards.

Have you tried a photo story with medicine = well/happy child + playing favourite game (etc), no medicine = really poorly/ sad looking child + no playing (etc). Photos of him if possible.

Make a video on the ipad of mummy and daddy taking 'medicine' and being very cheerful afterwards.

Give him his favourite drink in the syringe and get video of him taking it and watch that lots of times. Reward watching.

Watch loads of episodes of Dr Ranj.

You may have decided to drop the meds this time, but I think it's worth working really hard on this issue in calmer times for next time.

Autism isn’t a tantrum. Autistics don’t learn to have meltdowns in order to get out of doing something unpleasant.

Yep, autistic children do learn to repeat behaviours that enable them to avoid anxiety.

LadyPeacock the OP's child is unlikely to be planning his response like that.

With my child I do a quick planned pin down and put it in because I think the overall trauma is less than leaving it. I wouldn't do that method with a procedure that would take longer because I have seen the distress that causes him and we have a planned alternative involving short term sedation for those situations.

What IS abuse and neglect is not treating the child. Nobody is suggesting beating him

Thank goodness someone else has said this. As a RMN I find it disgusting that people have suggested restraining someone without capacity to give them essential medicine is not treating them with dignity. Denying people access to healthcare because they lack capacity is immoral and undignified. People with autism die because of wishy washy approaches to healthcare eg "they bite and kick so I can't give them medicine". I think death by indifference is extremely undignified, and I would rather restrain someone and make sure they have appropriate treatment to keep them alive and well!

Sorry I'll get off my soap box now...

OP, it's obvious that you care about your son very much, and I know it must be hard to pin your own child down, but he is going to need medicine throughout his life and this is something that you may have to get used to. I'm astonished that LAs won't teach you safe restraint techniques - in that case I would be ringing his social worker and insist they put social care in place to administer his medicine as they haven't given you the correct support to do it yourself!

LA's rarely provide safe restraint training to parents even if it is teenager with very challenging behaviour. You usually get told if you can't cope there is always residential care.

In my own authority social care say it is health's responsibility and health say they don't provide it

I haven't read the thread but iv antibiotics made my son deaf. They actually have a high risk of effecting the balance and hearing part of the ear and so are only used when in a life or death situation.

This is a very interesting thread as we have huge difficulty getting DS1 (nearly 7) to take medicine, although we have had some break through recently with small tablets.

Any liquid meds and he just makes himself sick (he has severe reflux so is sick incredibly easily). I won't even tell you the trouble we had recently trying to draw blood from him.

He is NT and I thought I could just explain things to him but now I'm thinking we need to try different tactics (especially if he ever needs more blood taken - I'm still traumatised from that experience!)

Good luck OP, I hope you find something that works.

LadyPeacock the OP's child is unlikely to be planning his response like that.

No, not this time. I wasn't suggesting that. This time he is just genuinely really stressed about taking something that tastes nasty.

However, if your mum tries to give you medicine and when you bite her she backs off and the medicine goes away, next time she holds the syringe you may well bite as first response. Why wouldn't you?

The lack of empathy for the OP and her DC is staggering. Whilst I don’t have an autistic child myself, I have been a governor at a special needs school and learned a lot about children with autism. I am in continued awe of the parents and children I met.
OP, I hope your little boy feels better very soon.