To not be surprised people go to A&E and call ambulances overnight?

[SinkGirl]

DT2 has chicken pox,DT1 had it two weeks ago,

Today he’s gone downhill gradually and from 7pm onwards he was crying nonstop. At first I thought he’s just itchy and distressed, gave the last of the day’s calpol at 6:30pm so couldn’t give any more. By midnight we’d tried everything and he was screaming and hitting himself in the head. He has ASD and is nonverbal so can’t tell me how he’s feeling, but this is not normal for him.

Still, he only had a slight fever at this point, no other signs of infection etc. My main concern was something potentially causing a headache? So I figured I’d call 111 for advice. Called them for DT1 a couple of weeks ago but it’s the first time I’ve used the service for years.

Took 15 mins to get through to someone and she could hear DT2 screaming in the background. She sounded concerned and tried to speak to a clinician but they were all busy, so said they’d call me back.

At 2:10 he finally dozed off, for 20 minutes, then woke up screaming again. Dozed off again at 2:45, 111 called back just before 3am. I told them he had just fallen asleep and he’s dozing in and out but very distressed when he wakes. They can’t assess him while he’s asleep so they say I either have to wake him or close it. They get me to agree I have no current concerns and close it and tell me to call back if I’m worried. Of course 5 mins later he wakes up again very distressed, then settles again. Now I’m faced with either another wait of several hours, at the end of which he may be asleep again, or just waiting for GP to open. If he had a higher temp or other worrying signs I’d go to A&E but I understand why some people would have gone already.

People get crap for bypassing 111 but honestly I’m not surprised they do!

Good luck with the cp, my 3yr old had it Christmas and 8m old New Years of 2012. Will forever be know as poxmageddon in our house. 3yr old was not itchy but ill as if he had flu. Just wanted to lie down, didn’t open Christmas pressies until the 27th, he started with the spots on the 18th (his birthday) so it really dragged on. Then 8m old was horrendous, so itchy, would not sleep at night, cried if we picked him up, cried if we put him down. Walked him round the block in buggy in 4hr shifts as that’s the only way he’d calm, 3 days and nights of that and he started to perk up. Soooooo many people said we were lucky as he got it so young and wouldn’t ‘know how to scratch’. What a load of rubbish that is!!

111 have always sent me to either out of hours or A&E no matter what i’ve Called about.

111 is a bit better than 101 the police non emergency line.

I can relate to an example where i ought to have called 999 but I'm sure all have better things to do;)

111 were not happy when I called up to tell them my mother may have died (last stages of cancer,
we were frightened and alone and didn’t know what we were doing tbh). Apparently “may have died” is not good enough - you have to tell them whether she’s definitely dead or not definitely dead, as it is very important in terms of where they place you in the queue for a call back / doctor visit.

You could almost laugh if it wasn’t so incredulous.

Well we are now waiting on 111 again...

GP fobbed DH off saying the cream should be fine but to call back if we think he needs oral antibiotics and she’ll just issue them.

Of course after they close we strip him down for a bath and discover this - massive swelling, bright red, hot, won’t put weight on his leg and is struggling to sit up because of the pressure on that area.

111 said we’d get a call within an hour. If not I’ll have to call back. I know that either an OOH GP appointment will be quicker and less stressful for him than hours in A&E and I don’t really want to take chicken pox into A&E if I can avoid it, but I’m not leaving it til the morning.

FFS.

Paeds ED nurse here. Temp of 40 is a sign of a secondary infection. Please take him to the ED. Of course you shouldn't take a child with 'just' chicken pox to the ED, but in this case he really needs to be seen. If the nurses raise an eyebrow to start with, ignore them. Your boy needs to be seen and they will soon realise when they examine him.
Wishing you all the best and hope he's feeling better soon.

I would be taking him straight to A&E now

That temp of 40.1 was a couple of days ago now - Temp currently 36.5 after calpol and a cool bath an hour ago, but was 39.5 before that.

111 just called back and after assessing him if he’s on the list to see a gp within two hours so waiting for a call with a time.

I’m keeping an eye on his temp and the redness / swelling which isn’t rapidly spreading or anything and he’s quite calm right now, not distressed. I know it must be very painful though as when you pick him up he tenses so much and he won’t put weight on that leg.

If he deteriorates at all or the redness expands more I’ll get DH to take him to A&E

If you need to go to a&e just you pop in first tell them he has what looks like infected cp and that he’s non verbal that will hopefully be able to put you in a separate room

Please if your son is hyperglycaemic when sick give him a SOS powder it's very dangerous if there blood sugars go to high or to low .. my son has hypoglycaemia hyperinsulinism and his blood sugar have to stay between 3.5 and 10 x

39.5 is still high for chicken pox. Glad your getting to see OOH GP

I trusted my instinct and took DH to A&E after 48 hours of useless advice etc from 111. If I hadn't he would have died - currently suing the service. DH is now housebound and unable to work.

www.facebook.com/1672796202984073/posts/2239821416281546/
Not sure if this will link (great with sick kids, not so with computers!)
For those interested it is an article about the use of ibuprofen in chicken pox and fever as a sign of secondary infection

He had hyperinsulinism until 18 months - small world! He has KH now - we’ve been giving SOS the last couple of days when he’s skipped meals but his sugars have been stable and ketones not too bad luckily. They’re not worried unless his sugars go below 3 - lowest they’ve been in 3.6, highest 7.4 so nothing too concerning yet and hopefully with the SOS it will stay that way. His fluid intake, urine output and food intake are all way down, since his tongue is covered in blisters but just managed to get him to drink a whole bottle of water by putting a bit of orange juice in it.

Luckily they’ve fitted us in really quickly, appt at 21:15 so they’ve just left - I don’t drive so I’m at home with the other twin.

DH just told me that the GP didn’t even look inside his nappy, just looked around it. Given that he already had three black holes where his penis meets his scrotum, I am not happy. Surely they need to do a proper examination? This is why I struggle to trust doctors - they can be really dismissive until things are much worse and it could have been avoided.

Some of the pus filled ones have wept / emptied while applying creams but are filling back up. I’ve just marked the red area with biro but looking at photos from earlier I don’t think it has spread too much, just become more swollen, hot and solid

Just hoping oral antibiotics will be enough and he can come home, bless him. He hates being in hospital, he has a lot of experience!

DH just told me that the GP didn’t even look inside his nappy, just looked around it. Given that he already had three black holes where his penis meets his scrotum, I am not happy.

I agree with most of your posts OP but this is unfair on the GP. It was up to your DH to point these out.

I hope you get some sense later tonight- your poor child does seem to be suffering badly.

I was going to add that I agree with others that some of the algorithms the call handlers use just don’t work for small children. When I called about my non verbal one year old, I was asked things like has she told you she’s in pain. Er no, she can’t speak yet. We’ve just about got dada and mumma. But she took my no as a straight no so she got to the advice of self-care which was massively inappropriate. I had only called to see whether I needed to go to the main A&E or whether there was a different paediatric centre. She got very argumentative when I said self-care was inappropriate. A nurse phoned me back less than 5 minutes later and told me to go straight to A&E.

MrsZola that’s horrific, I’m so sorry.
I’m already angry enough that we are having to drag my poorly little one out into the hospital when the GP should have examined him properly and should have just given the prescription so we had it on hand if things worsened - if she can trust us to decide when he needs them, why not just give them?!

I can’t imagine how devastating your experience must be. Well done for trusting your instincts. I now feel awful as I’m sure his behaviour last night was him trying to show us how poorly he was, and he’s been calmer today because he’s just more sick. Fortunately no signs of sepsis or anything so hopefully he won’t need to be admitted. Fingers crossed.

heartknot when his twin had it two weeks ago his temp went up to 40.9 even after calpol. I got a call back from GP by which time it had gone down and he told me to alternate calpol and nurofen. I said I thought you weren’t supposed to give it and he backtracked but said the evidence was minimal and it was fine if we had to. Next day I took him to see a different GP (same one DT2 saw today) who said she’d given her DD nurofen all the way though chicken pox as she didn’t know you weren’t supposed to.

Both of them made me second guess myself and I was pretty close to giving DT2 some last night when he was screaming hysterically and couldn’t have any more calpol until morning. So glad I didn’t.

Maybe it is unfair, but doctors shouldn’t expect parents without medical training to assess what’s normal and what isn’t. I would have pointed them out but he didn’t think they were a problem. I don’t know why you wouldn’t have a quick look under the nappy if you’re looking next to it.

DH feels really responsible for how things are now and is really upset but I don’t think it’s his fault - he hasn’t had much experience of doctors etc, I handle most of the appointments as he’s at work for most of them.

Have you tried an antihistamine to help with the itching op?

Yes, Piriton does nothing at all for him sadly (he has allergies too and it hasn’t helped much with that).

GP said this morning we could give him Phenergan which is more powerful. I was very wary though as it is such a sedative. They can have 3x 5ml per day, so I gave him 1.25ml initially. It seemed to relax him a little and help the itching but didn’t knock him out, so gave him the same again a few hours later. So over the course of this afternoon he’s had 3.75ml and it does seem to have helped to an extent. The itching is definitely an issue but I think it’s more the swelling and pain that’s upsetting him.

DH just called - OOH GP was also very unconcerned but has given him a prescription for antibiotics. I don’t understand it at all - this is why I never trust my instincts as even when I’m sure they seem quite seriously unwell, a doctor can make you feel you’re neurotic.

How scary for you OP. I hope he turns the corner soon and has a better day tomorrow with the Phenergan hopefully giving him some relief. I had to take it for morning sickness and it was a really strange sensation at first, but by the 3rd dose I stopped feeling so weird.
My experience is that GP’s have always asked me to take nappies off when they’re doing a full examination for various things.
Last time I had to ring 111 and DD was asleep when they called back I just lied and said she was awake and was responsive and felt a normal temperature. She had been when she was awake only 1 hour earlier and I wasn’t going to wake her, they need their sleep when they’re ill. NHS advice is not to wake them to give Calpol/Ibuprofen for pain or fever, but to wait until they wake themselves because obviously the body needs the rest to fight the illness.

Thank you. He got in at nearly 11pm by the time DH had managed to get his prescription so he had some antibiotics and 1/4 dose of Phenergan and went straight to sleep. It’s been so much more effective with the itching than Piriton which he seeks immune to - may as well not be giving it at all! I know some people say Piriton makes their child drowsy but definitely doesn’t with mine.

Glad I didn’t give the full dose though! According to the box, for allergies / itching you can give the whole day’s dose at once (15ml) - I don’t think he’d wake up for a week!

He’s starting to wake up now so hopefully things aren’t too bad this morning. Poor little monkey, he can never catch a break.

And yeah, I’ve learnt a lot from this - I should have said he was awake, but the lack of screaming in the background might have given it away!

Also 111 are much more effective if you call earlier in the evening - he was seen within two hours of our first call which is very good. I guess they have fewer staff later on which is understandable, but makes it very difficult to rely on the service if your child is very ill in the middle of the night.

Also DH is kicking himself about not insisting the GP checked under his nappy but I think she should have done anyway. I don’t know how you can assess for infected pox without looking at the whole body, especially an area prone to infection given the bacteria etc.