Any paediatricians on here? Could do with advice regarding non verbal asd child, ?tonsillitis

[Pointypointything]

7 yo. Has been very irritable for several weeks now. 3 weeks ago spent a night in hospital after he'd had a fever for 4 days that stopped responding to medication and was completely lethargic. Doctors in a&e or the ward were not able to examine him and we were discharged with antibiotics.

Problem is, he's not a lot better. No noticeable fever but is barely eating and fluid intake much reduced also. Not enough to be concerned about dehydration but not normal for him. Intermittent screaming and sobbing. At times seems uncomfortable swallowing (grimacing) but not always.

With regular painkillers he's a lot happier but still not eating - day before yesterday went 24 hours without eating a thing. Today has had 2 biscuits.

I know the usual advice would be to.see a GP but they have proved time and time again to be unable to physically examine him and usually prescribe antibiotics 'just in case'. I don't want him taking antibiotics unnecessarily.

Its not an emergency as like I say he's not dehydrated and these symptoms have been ongoing for weeks. He did appear to have a fever yesterday but not so far today (though hard to tell when I'm alternating calpol/nurofen regularly.

I've been told by 111 in the past that if he's not got a particularly high fever and is not dehydrated that they're not worried,and that if it was an infection that after several days if there is no sign of symptoms worsening then it is not serious. But he seems to be in pain/discomfort and I don't know what to do.

Advice welcomed, thank you 🙏

Disclaimer - not a paediatrician.

One of my DDs had an awful earache once. She was literally sobbing with the pain at one point. It turned out she had tonsillitis which her nan (who she was staying with) hadn’t realised and she had had it for a while. By the time we managed to see someone, it was on the way to resolving. Just wondering if that is what is happening here.

Not a paediatrician but I'm the parent of a severely autistic non verbal teen, so I have some empathy
How are his bowels movement, s are they regular? m?My son has chronic constipation and can get like this when he's constipated
I would assume he's in pain somewhere ,teeth,ears tummy ,does he have a paediatrician?
My son did at that age and she was great and i would phone her rather than the Gp
Do you have an out of hours Gp you can get home checked over
I know it's not easy when they can't tell you what's wrong.

Hi OP
im not a paediatrician but couldn’t read and run. I’m a mum of ND kids. Luckily they are verbal tho albeit when sick I rock and don’t speak and both of my kids are similar.

what a worry.

tbh if I was you I’d also suspect an underlying problem which no one is getting to the bottom of.
has anyone ever been able to examine him?
Will he let you?
tbh I’d be tempted to ask locally which is the best GP (private or NHS) for ND families and seek an appointment with them.
could be tonsillitis. Or teeth. Or something else.

and at 7yo they can get worse so quickly that I can understand your concern.

keep an eye. Keep a diary of symptoms.

Update GP via phone (ie get a phone appointment to discuss a plan for what you do if this continues or what should send you to A&E or back to GP in person).

good luck.

Just to add are there any play therapists at the Gp s ?
They dint at my surgery but they have them my local A and E etc they have always helped distract my son when he is uncooperative with being examined.

This is a tricky scenario, if you acknowledge that a health care professional would be unable to assess his tonsils and don't want antibiotics without a diagnosis.

Are you able to monitor his heart rate & temperature at home and aware of signs of infection? HR>100, T>38 (unless you know his normal is different).

Are you able to monitor his bowel movements (and fluid in and out) and keep a diary (Bristol stool chart)? Chronic constipation can kill.
What painkillers is he taking? Opioid based can cause constipation.
A face to face consultation could possibly assess his abdomen for this.

You'll be the expert on any soft signs of deterioration and it's important that anyone assessing him incorporates your concerns within their assessment.

You say he's non verbal, is he autistic or have a learning disability? If so are you presenting the relevent & most recent health passport to any health care professionals prior to them assessing him to better understand your child in the context of their healthcare needs.

Is your son's GP empathetic to his needs and knows him well? Might be better than an out of hours locum GP, but, some professionals have the skillset your son requires, others may struggle.

Was be traumatised by his previous hospital admission (blood tests with restraint etc) and is now communicating this by not eating?

Lots of angles to consider.

Apologies, a 7yo HR of >120 would be not normal (not 100).

Thanks all for the replies. I forgot to mention also that his breath smells.

To answer some questions, I don't think he is constipated as he has a movement every day (usually 3). Some of these have been a bit softer than usual but ive put this down to him mainly drinking oat milk and not eating much. Although there does seem to be some correlation between screaming and then a bm shortly afterwards. He is messing with his penis a lot when he cries but then he does this anyway so 🤷‍♀️

He is both autistic and has a learning disability. No trauma from the recent hospital stay as they trusted me when I said his temp was spiking and didn't even do obs as this was distressing for him and he wouldn't comply. He has previous trauma around his ears due to grommet insertion and a subsequent infection that took weeks to resolve and had to be drained. Therefore he won't even tolerate an in ear thermometer.

GP frustrates me hugely as they are well aware of the issues but insist on me bringing him in. They quickly abandon any attempt at examining him and usually offer antibiotics. Yet if I ring/do the online form and request antibiotics they insist on seeing him. Rinse and repeat.

I have some knowledge of temp/behavioural signs of clinical unwellness so usually only take him if eg he has no interest in anything and is just lying around staring into space (he has adhd also so this is extremely unusual behaviour) or has not passed urine and is refusing a home fluid challenge. As I say, this situation is not so severe just ongoing.

Painkillers are paracetamol and ibuprofen, nothing opiate based.

Would he normally allow you to clean his teeth? If so, have you seen anything in there that's concerned you? What's his oral hygiene like?
What kind of smell are you picking up on?

A lot of LD / ASC children who are unable to allow someone to look / work in their mouth have dental problems requiring tooth removal and under general anaesthetic.

Is he picking / hitting / scratching anywhere new that may indicate an irritation there? Ears?

Any chance he's inserted a foreign body into a cavity?

Its just a nasty smell. Not hungry breath smell, nasty smell, don't really know how else to describe it.

It could be dental. He allows us to (very briefly) brush his teeth every day but is very resistant to his front teeth being brushed. He has a front top tooth literally about to erupt which I know has been bothering him. Has a specialist dentist but has not allowed them to look properly the last couple.of times we have been. We are now on 3 monthly familiarisation visits to get him used to the environment - which is of course helpful in the long term but less so in the short term if there is a dental issue.

I think reading all your replies it is probably not anything hugely concerning, I'm just so helpless to pinpoint what is bothering him and wish he was able to communicate it to me.

Re the foreign body, he is unlikely to have stuck anything in a cavity BUT he is obsessed with picking up stones in the garden and putting them in his mouth. I've requested school do a blood test once he returns as last time he was doing this his iron levels were low so I suspect that again now. Although this wouldn't explain his current discomfort I wouldn't have thought.

It is a worry, it sounds like your concerns are well founded, and your instincts are right, so good on you for advocating for him.

He is communicating something's wrong, just not using words.

Maybe you could explore a little more when cleaning his teeth to see if your able to narrow down a possible cause.
Any "examination" your able to perform in the familiar setting of his home will be valid history in any health care professionals assessment.
It might not be done in one sitting, perhaps best over several days.

Thank you @BreezyPeachGoose. I really hate having to take him to a medical setting as I often feel like the doctors are exasperated and there's an air of "well what do you expect us to do?"

I know it's really hard when they are non verbal and can't tell you what's wrong
It breaks my heart when my son I ill and i feel like i can't help him
Just a thought if he's playing with his penis maybe a UTI?

I have considered this, but again ive been told in the past by a doctor that if a uti was present that it would if untreated spread to his kidney(s) and at that point he would be very clearly clinically unwell. So as this had been several weeks, based on this it would seem unlikely?

I would probably be keen for him to be seen by a paediatrician. One of the reasons children with learning disabilities/ASD have worse outcomes from illness is that they are tricky to assess but that doesn’t mean you can just keep cracking on with a plan that isn’t working. Just occasionally if it’s really impossible to get anywhere with the usual distraction/play therapy approaches then using some sedation or even anaesthesia is appropriate to get to the bottom of things. Do you have open access to paeds after the last admission? (Doi, not a paediatrician but am an anaesthetist)

I wonder if it’s constipation and the softer stool is leakage around a blockage. Constipation can cause bad breath when it’s bad enough.

Just wanted to update - today he's come home from school holiday club and been screaming and sobbing, getting my hand and pressing it firmly to his right ear, and also just behind it. I gave calpol but an hour later he was writhing around literally and crying. Its the first time he's communicated where the pain is so waiting to arrange an out of hours appointment with 111.

Oh bless him i hope they can pin point where the pain is ,my son is at respite to night ,it's so quiet without him!

Will he tolerate a warm pack or hot water bottle (not boiling hot water) against his ear if putting your hand there helps @Pointypointything ?

Also give him some ibuprofen if the paracetamol is not touching the pain.

It could be a dental abscess with referred pain in his ear, an ear infection, tonsillitis or some combination of the three by the sounds of it.

If he will suck sweets you can try difflam lozenges as this will be easier than getting him to take difflam spray for a sore throat.

https://www.sorethroat.co.uk/Explore-the-Difflam-range/difflam-lozenges-sore-throat-helpers

It is very hard when they can't tell you what is wrong. Also it is hard to hold them so a health professional can look inside their ears, throat or listen to their chest. I nearly didn't manage it last time I took DS, in the end they just prescribed antibiotics for a possible ear infection when he clearly had a chest infection, the GP just couldn't listen effectively with the amount he was screaming having got wound up being kept waiting in the waiting area for the appointment. Next time I will take DH as DS is almost too big for me to hold now.

Have you been referred to the specialist dental service locally? If not ask your dentist because they are much better suited to treat children with ASD and LD.

Thank you, this is helpful. I will try a hot water bottle.

He won't suck sweets but we have difflam spray from his last hospital stay. We were fairly confident it was throat then as he would eat after the difflam spray... I could try this again.

I did end up giving ibuprofen too as he was clearly in pain still after the paracetamol. Since that has kicked in he's been happy again.

I haven't heard back from 111 but as he is ok for now I'm going to keep up with the painkillers tonight and get him into the GP in the morning. I doubt they will be able to examine him but we can try...

He is under the specialist dentist and last went 6 weeks ago. But would not cooperate so they weren't able to check unfortunately.

Will definitely take DH to the GP as I have zero chance of holding him on my own!

Hi @Pointypointything
hope he is ok now?

How long has he been having the ibuprofen regularly? If he cant eat, then the ibuprofen isn't going the be great for his stomach. I know he need the pain relief, but the ibuprofen could be causing problems.

Its so hard for you all, I hope he's on the mend soon.