My DS2 has Kawasaki disease - desperate to speak to anyone who has also been affected by this very worrying illness

[sleepyhorse]

Hi there

Have just spent last 7 days in hospital with ds2 who is 8 months old who has had suspected Kawasaki disease. This is a very rare illness that tends to affect under 5's and if not treated in time can cause serious heart problems. He had the treatment which is called immugloben, given in 2 lots of 12 hour sessions. And then next week he needs to go and have a heart scan to see if any damage has been done to his heart and he will have to be monitored for up to a year before he gets the all clear so as you can imagine a very worrying time for me and dh. I know it's very rare and most people haven't even heard of it but just wondering if anyone else's child has had this or know anyone that has?

not personal experience but a bump and a friend's DD had Kawasaki aged 2-ish. She's now 15 with no lasting effects.

A friend's 6mo had this and was very ill for a couple of weeks. But hisheart was unaffected and last year he had the all-clear.

I hope your LO is OK.

Sleepy - I am so sorry to hear this :(

Was it you that was on here a little while ago with a poorly DS, thinking it could be this but they were saying he was OK. The GP came back and finally took you seriously??

I'm sorry, I don't know anyone with any experience of it, but please stay positive, hopefully they have done the treatment quickly enough and he will be OK x

I'll be thinking of you all.

Please let us know how you get on.
x

Thanks, some reassuring comments x

bump, yep my ds3 had this last year in oct, when i was 8mths preg!

it was quite horrible like you say, but he just turned 6 this december, so was 5 when he had it and he has only really just started back at school properly it really knocked him out. we have been having regular check ups with the gp and have to go back for a follow up heart scan.

we werent so lucky with the immunoglobulins, apparently they only work if you catch it at a certain stage of the illness and with my ds3 it was too late. tho thats a whole story of crap out of hours gp who diagnosed kawasakis but DIDNT send him to hospital!

thankfully he seems fine but any illnesses he has had since then, colds etc do seem to knock him out a bit and he was VERY tired for a while, still gets tired easily but like i said touch wood all fine so far.

really hope your ds gets well soon and makes a full recovery, it is so scary when they start talkign heart scans etc, but it was very simple to do.

xxx

4madboys - sorry to hear that. Sounds like a difficult time for you, must have been very stressful having to deal with this being do pregnant too as presumably you had to stay in hospital with him? What were his symptoms and how long had he been ill before they treated him? That's disgraceful your gp didn't send you to hospital asap!

grr did a big long post and it got eaten by the internet fuckery bugs!

basically he was ill for over 2 wks BEFORE they realised it was kawasaki disease.

he had sore throat, mouth, lips, his tongue was also very sore and bright red in colour, he had red eyes and very high temp that kept coming and going. he was very lethargic and looked ill, the giveaway was when the palms of his hands and soles of his feet started to peel, the gp straight away said oh kawasakis and sent me home with a prescription of antibiotics!

luckily my mum is a nurse so when i said to her his symptoms and what the gp had diagnosed she insisted we went back to see a diff dr, who straight away saw him and phoned the hospital to say he was sending us straight in to be admitted.

but by that point it was too late to give the immunoglobulins, they have to be given in the first ten days of the illness? he was kept in and monitered, drip, calpol etc to reduce temp and monitered very closely, heart moniter, oxygen levels etc, he just gradually got better and then we had check ups with gp and also have to go back to hospital out patients for further checks on his heart, but so far he has been fine, tho it took him a while to get properly well and he can still get tired now.

he didnt do pe, sports, any physical activity for a while as they werent sure about long term heart damage and he was too tired anyway!

he was off school for ages and then went back part time and has only recently started back full time and now does pe and swimming etc, and generally seems fine but if he gets a cold or anything it really knocks him back and he gets very tired, but this is par for the course with kawasaki apparently.

basically most of the time he seems like any normal healthy just 6 yr old boy, but occasionally gets very tired and very pale and we have to make sure he gets a good rest.

all scans etc have shown no issues as yet, but we have more follow up out patient appointment still to go to, they want to keep an eye on him for up to a year!

like you it is very scary, esp when they start talking heart problems and DONT google too much! thankfully my mum is a nurse and has been able to reassure me and we started seeing a different gp who has been great, as was our HV.

hope your little boy recovers asap, lots of cuddles and treats i think! xxx

4madboys, firstly thanks so much for sharing your experience with me. Its so good to speak to someone who has also been through it especially with it being such a rare illness, im not likely to ever meet someone in my life whose child has had this, thank goodness for mumsnet!

Your poor son, must have been so hard for you to see him so tired and missing so much school etc, sounds like is is slowly getting better and must be such a relief that no damage has been done to his heart.

My son had similar symptoms but did not get the peeling hands or feet, although they did look quite swollen. He also had a slight rash on his legs. They initially thought he just had a bad chest infection but because the high temperature wouldn't go away even after a course of anti biotics thats when they suspected it was Kawasaki. So said they weren't 100% sure it was Kawasaki as there is no test to diagnose this so had to make an educated guess based on his symptoms. It was day 10 into his illness when they started the treatment so I'm hoping it will be a success although we have now been home for a couple of days and he got another high temperature last night which makes me wonder if he has responded to the treatment? All a bit worrying as I ask myself is it even Kawasaki, what if it's something completely different that could also be serious if not treated.

Also meant to say that I don't know if you were told this too by the doctors but apparently it seems to be almost always boys that it affects, not sure why....and seems to be much more common is Asia. Well I hope your little boy makes a full recovery soon 4madboys. All the best xxx

yep i was told the same, always boys pretty much and not common in the UK at all! as a mother of four boys i was worried my younger son may catch it, but apparently its not really contagious, just one of those things and like you say there is no test for it, just if you have enough of the symptoms.

they did say to me that they think there may be a genetic predisposition to it, which is interesting as my mum has a heart problem caused by a virus she contracted as a child.

hope your little boy gets well and if it helps my boy also kept getting temperatures for a number of weeks aferwards, particularly if he got tired.

Haven't had time to read earlier posts just OPs but wanted to add the fact that many years ago a friend's son about same age as your ds was finally diagnosed with this. His DS is now 18 and has always been very energetic ie doing lots and lots of varied acitivities and once out of hospital never showed any signs of having been ill.

Wish your ds a speedy recovery too.

Yes I think its 5% risk of heart problems after having Kawasaki disease so it's a small chance but still worrying when it's your child.

We have got first heart scan tomorrow morning for ds since he has been treated for Kawasaki last week, to see if any damage has been done to his little heart. I feel so so sick with worry, I'm usually quite a strong person but I'm really not coping with this and am struggling at the thought of receiving bad news. I guess I'm worrying as he is only 8 months old and they didn't treat him until the last day within the 10 day window so I'm panicking that they might not have treated him in time. Sorry I know this is long but it somehow helps to gather all my thoughts on here.