Extreme tiredness in the evening

[HandHold174686]

My 8yo has a complex medical history, and has higher than usual levels of fatigue anyway.

The past fortnight it's been much worse! She gets to 6pm and she's falling asleep on the sofa, collapsing face first on the floor and needing to be carried. She's been too tired for even a bath. She's been asleep by 6.30 or 7 every single evening, whereas usually it'd be closer to 8/8.30.

She's got asthma, but it doesn't seem to be that.

She's had heart surgery but her recent check was clear other than the usual mild valve leak.

We give her vitamin d supplements.

She's not been unwell.

Her diet is the same as ever.

She had comprehensive bloods in October, which showed low vitamin d and borderline under active thyroid. She'll get repeat bloods soon.

Weirdly, in the daytime, she's been absolutely fine!

I was thinking of calling her heart team to see if they can fit her in for a review soon.

I'd ask them for a review definitely

I would definitely ask for a review. The poor little girl! She's had such a lot going on.

Thanks, I've got a call with a GP this afternoon so I'll seek their advice.

Wondering about calling ENT and asking for her sleep test to be redone.

Glad you have a call in, will be thinking of you

If the GP call was a little inconclusive is it worth requesting genetic testing from one of her hospital consultants?
Do you regularly test her oxygen levels at home with a pulse oximetry? (It's a little device that painlessly clips onto a finger) it can measure blood pressure I think which might be useful too to establish whether her bp is varying a lot.

Check her hearing too, if you're contacting ENT anyway, she might have mild glue ear and be wearing herself out lip reading all day.

Thanks all, GP has ordered comprehensive bloods.

She's already had genetic testing (she has Down's Syndrome).

Glasses are up to date.

She has a touch of glue ear, I can check whether she's due for another test.

@flowerrrrpoweerr thanks, we have a sats monitor at home. Sats sitting at 97% other than the odd dip, resolving with ventolin.