Kawasaki disease in children post covid

[mrsmonkey14]

In September my 7yo was seriously ill with Kawasaki disease, about 4 weeks after having COVID (wasn’t particularly ill with covid at the time, cold symptoms, but tested positive).
Thankfully it looks like she will make a full recovery but I heard from hospital consultant that 2 more children have since presented with similar.
I’m feeling quite traumatised after it all and wanted to know if any other parents out there whose children have also had Kawasaki post covid? Thanks

Not after covid, no. My cousin’s little boy had it years ago. Also after having a mild virus. He made a full recovery but had to have checkups for a while and a heart scan (maybe a year or so later?) to check that there were no lasting problems but there weren’t. He’s absolutely fine and is now a strapping, sports-mad teenager! Hopefully it’s the same for your son. :)

Hi @mrsmonkey14 So sorry to hear what your dd has been through (and you!) That must have been so hard for both of you. Ds had this after covid back in the first wave and I completely understand you about feeling traumatised. As it was the first wave the doctors weren’t entirely sure what it was at first which was quite scary. They thought maybe chicken pox before realising it was something completely different when we had to take him into hospital. There’s still lots I can’t remember about that time. I know I was there but it’s like my brain won’t let me remember what it felt like.

As it was so early on we didn’t know anyone else going through this, but in the second wave our consultant told me of a couple of other cases he’d seen, one which presented exactly like ds which was a bit weird as he had a strange bundle of symptoms! He was quite offended to no longer be unique

He’s not completely back to normal yet, he still has problems with his heart and some inflammatory system problems along with fatigue, but he’s better than he was this time last year which is a big relief!

I’m sorry it’s not a more reassuring post, I wish I could say he’s 100% better but I’m sure in the future he will be! The hardest thing has been trying to get him to slow down as was always so energetic before. He’s been so brave though and doesn’t let it get to him to much. I’m a wreck though!

Are you holding up ok? I know it can be really difficult sometimes as there’s such a strong narrative in the media (and on mumsnet sometimes!) that covid just doesn’t affect children, that speaking out when your child has been affected feels really difficult. I’m here if you need to talk and I hope your dd carries on feeling better and better

Thank you for the replies.
@BewareTheLibrarians I’m sorry to hear your DS is having ongoing issues. What age is he?
It does really help to hear that others have had similar (although of course I wish no children had to go through anything like this).
We have been so incredibly lucky as DD’s latest heart scan this week showed no damage.

Just taken a while to process it all, as we didn’t have a great experience in hospital, they thought it was something else, and weren’t taking me very seriously (told was overreacting etc). I keep thinking if I hadn’t been so pushy I would have lost her.

Thank you again.

Great to hear that your DD’s heart scan was clear. It is a difficult thing to diagnose and my cousin’s little boy was moved back and forth a bit between gp/ooh/hospital etc before his diagnosis was confirmed. Very stressful. Hopefully you’re all through the worst now though

And sorry for saying son earlier. Not sure how I misread that!

@mrsmonkey14 I’m so so happy to hear that the heart scan came back clear, that must be such a huge relief. If only they could prescribe something to take away all the worry you feel up to that stage!

Your experience in hospital sounds so tough Not being believed is the worst feeling, and I’m sorry had to be that pushy to get it recognised, it’s absolutely draining.

Ds was 10 when he had covid, he’s 12 now, and he caught it in March 2020.

Luckily he barely remembers any of it, and I hope your dd won’t in the future, but it hits us as hard, doesn’t it. Somehow the worst part was calling 111 and 999 when he was at his worst and being told that despite his high fever, struggling to breathe when he was coughing, and burning chest pain, he could barely walk etc, he didn’t meet the criteria to be admitted and we just needed to watch and wait at home. That would not happen now and it was honestly traumatic They didn’t take us seriously until the Kawasaki disease type symptoms kicked in, and even then there was a lot of faff and delay as they thought he was too old. Thankfully since then we’ve had really good care but it was not an easy start.

Just remember you did your absolute best by your dd, you were pushy in the right way, you fought for it to be taken seriously - you should be sure in yourself that you did more than enough, because you did