Second self isolation period this month - losing my mind

[SinkGirl]

I have twins who are 4 - both are autistic and attend a specialist school. They’ve only been going since autumn half term and they absolutely love it. I had to go to tribunal to get them in, so they lost 8 months there while we fought this. They have a great deal of care needs, I have chronic pain and fatigue and DH is at home working long hours. I work part time for the NHS but from hope and struggling to manage.

After Christmas they went back for two days and had to isolate as a staff member with no symptoms tested positive. Then the whole school went to a two day a week rota.

They finally went back on Wednesday and Thursday - I’m currently in unbearable pain so spent most of it in on my laptop trying to get work done.

Was holding on to the fact they are back in on Wednesday but just got a call to say they have been in close contact with another case and now need to isolate so won’t be back in until a week on Wednesday.

I am absolutely broken already and don’t know how to keep going. I’m in so much pain which is exacerbated by having to lift them so much without the respite of school days. One of them is living on an iPad, the other will not engage with anything and has listened to Old MacDonald about 8,000 times today. It’s not like I can give them an activity or anything, they won’t do it even with support.

It’s not the school’s fault or anyone else’s but I’m falling apart. I’m on very strong painkillers but still in loads of pain and nothing more doctors can do about it so just trying to push through but not sure how much longer I can manage.

Sorry, I know there are no solutions to this - just needed to vent. Theirs is a tiny specialist school, only 7 in their class - I can’t imagine what mainstreams must be like right now. The poor staff, I worry about them too.

This is just a bloody nightmare.

Oh that’s such good news! I absolutely dread the blood tests too. Really pleased it’s done.

This morning was genuinely awful, the worst we’ve had in a long time. DT2 inconsolable, hitting himself, no idea why. DH gave me a break on his lunch hour and this afternoon hasn’t been too bad. Looking forward to my bed though, hoping tomorrow is better!

Oh no, so sorry. It is so grim when they are upset and can’t tell you WHY so you can help. Glad the afternoon was better and hope you get some sleep!

It’s utterly shit. It’s most shit not being able to soothe your own child or even understand why they are so upset in the first place. We had a nice bath time and he went to sleep quite easily (guess he’s knackered after an early start) but probably means he will up in the night. So will try to get some sleep and hope he wakes in a better mood tomorrow.

Just had to weigh him ahead of our hospital appointments next week and he has only gained a couple of hundred grams since we saw them in August - think they were concerned about his growth then (and DT1 is so much heavier it’s very noticeable when you lift them) so I anticipate more tests (joy). Just had something really serious ruled out, but there’s always something else to check for as he’s quite complicated. DT1 is very straightforward in comparison!

That sounds really hard & exhausting, I hope it was a better day today.
More days ticked off your countdown anyway

Doh, just realised the time, I'll revise that to say I hope today (Thurs) goes better!

Fingers crossed you do get some sleep. The constant worry is the most torturous thing. I often go to sleep with headphones in and listening to the Archers to try and block it off a bit. We just had to change his whole bed - Dh did it and ds is in bed with me but they all fell back to sleep whilst I am wide awake. Peri menopausal insomnia doesn’t help!

Spent all evening writing to the neurologist ahead of saturdays appointment.

Really hope your appointment goes well and you get some answers. I know how crappy it is not knowing what’s going on. Really hope it’s constructive and useful.

DT2 up again at 5 today in a terrible mood so just sitting in a daze. DT1 still asleep luckily. Looks like another long day on the cards. I’m so bloody knackered.

Not surprised you are knackered.

I just keep telling myself it isn’t always this bad, sometimes life IS easier and we will get there

Well we have good news from the blood test in that ds is immune from chicken pox even though he hasn’t had it. This means he can have steroid treatment on an ongoing basis.

Did you get any sleep SinkGirl?

Oh that is good news. Chicken pox was horrendous for my two so also great that he doesn’t have to go through that.

We are having a nightmare with DT2. Been up since 3am, he’s constantly hitting himself in the face / head and crying unless he’s eating basically. It’s only in the last couple of months he’s started doing it but he’s doing it all the time now. Nothing seems to help but food and he can’t eat all day every day. I think he just really needs to be back at school, not stuck here all the time but that’s not going to happen for several days yet. Just counting down the hours until bed.

Oh gosh that sounds so hard. I know it is a long shot, but have you tried full dose ibruprofen to see if it helps? It was by trying this that we realised DS was suffering from PANS/PANDAS. When a child is nonverbal like mine, it is harder to diagnose. Feel free to ignore if it sounds like rubbish, but constant eating is one of ds’s symptoms too. We have to keep food locked away at times.

No I’ve considered pain, but have tried painkillers in the past plus he calms right down when he gets what he wants so I’m pretty sure it’s not pain. He’s just furious most of the time at the moment - think he’s bored and frustrated but doesn’t actually want to do anything.

It is not for pain - it is to see if inflammation round the basal ganglia is causing ocd type symptoms. Have a look at the criteria for PANS/PANDAS - did this new behaviour come after an illness? When we did a trial of ibruprofen with our ds his new ticcing and obsessive behaviours were greatly reduced.

Or just ignore me of course. Since DS’s diagnosis I have to say I feel an overwhelming surge to mention it to people just in case - but I do see how irritating that is too

I don’t think it did but will definitely look it up and consider it.

I think really he’s just more sophisticated in what he wants and can’t express it.

That is so frustrating for him. And you.

Good luck for the night ahead

And they are back at school! This has been the hardest couple of weeks we’ve ever had, DT2 is exhibiting so much frustration and anger which he takes out on himself. DT1 has developed anxiety it seems. Let’s hope today and tomorrow at school help them to feel better.

Whoop whoop! Well done on getting through it. Fingers crossed that school helps and no more isolation needed!