Does anyone have any experience of Kawasaki Disease?

[snuffy143]

My DD (8) was diagnosed with Kawasaki on 2nd July on her 6th day of fever and 4th day in hospital. She received the standard immunoglobulin treatment and has been steadily picking up. We came out of hospital last Saturday. She still has swollen joints, inflamed corneas and we are watiting for an appointiment for a heart scan. Does anyone have experience of this disease e.g. how long will she be so tired and weak for? did your DC get an aneurysm? how long were they on aspirin for? does the worry ever go away? Any info would be helpful!

[onlyjoking9329]

bumping this for you as i know one MN whos son has this, i think it was Essbee?

[fennel]

Essbee's 8yo Ds had it last year, she usually comes on mumsnet late in the evening but I'll point her towards this thread.

[NeverTickleASleepingSoupDragon]

Essbee's DS was ill for quite some time IIRC.

Search the archives for kawasaki.

[NeverTickleASleepingSoupDragon]

one thread here Not Essbee's one

here's essbee's original thread

a bit more here

There are several other MNers with experience (ewither first hand or through friends/family)

[essbeehindyou]

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[essbeehindyou]

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[snuffy143]

Sorry not to have responded to these kind messages. I have just sat and read your thread about your DS, Essbee, and can't help thinking that we have been very lucky. DD has not been nearly as ill as your DS - we were in hopsital for 8 nights and have now been out for a week. Her temp has been stable since the day after the immunoglobulins. She has been into school today for the first time for about half an hour, just to see her friends, (she, too was a bit nervous!) and that, along with a trip to the docs for more eye drops has completely knackered her.

Was your DS grumpy? Our consulantant said this was a symptom and she seems particularly lacking in tolerance towards her little brother.

Her fingers and toes are peeling now and she still looks a little puffy but not as nearly as much as she did! Her leg joints ache if she stands or walks for any distance. And I am obseesive about her not running or exerting herself.

I am so worried that we are still in the 2-8 weeks mortality thing - could she just die? A heart attck or something? Or would she get ill like before first? We are still waiting for a cardiology appointment at Birmingham Children's Hospital - the GP said today that we should ring up on Monday to chase it. I am optimistic that the chances of ehart problems are small becasue she received the immunoglobulins on the 6th day.

I was quite horrified by your diagnosis experience. We were so lucky - she was admitted on the 3rd day of fever and started on IV fluids and antibiotics and the next morning a smart registrar started talking about Kawasaki so it was always in the docs minds until they finally decided to diagnose it on the 6th day. Her temp had been lower on day 5 due to diclofenac suppositories!! But it went up to 40.3 on the 6th day. So...there we are.

I am a teacher and today was the last day of term so I now have 8 weeks to watch her like a hawk! Thanks a lot.

[snuffy143]

Hi. Going for echo at Birmingham Children's Hospital tomorrow. Any idea what to expect?
Thanks a lot.

[noddyholder]

An echo involve4s putting gel on the chest and is more or less like an ultrasound but they use echo aswell to get their info.Takes about 15 mins HTH

[saggermakersknockturnalley]

snuffy - dd goes to the heart unit at Birmingham. The echo is like the scan you have when pg. It doesn't take long but the clinic is often packed. Take things to do for dd and a book for yourself. Plus something to drink/eat. Parking is a nightmare; we usually go on the train - it's about 10 muinutes walk then but we normally get a taxi.

Sorry this is rushed. Good luck, fingers crosse for good news.

[snuffy143]

Thanks for the info. Considered train but DD not able to walk far. Am going with DH and he going to drop us off and take car away and park it if poss. Glad the procedure sounds painless?!

[saggermakersknockturnalley]

Dd doesn't walk far, hence we get a taxi, but you can't guarantee a seat on the blimmin train these days.

Whose clinic are you going to?

[snuffy143]

I have to confess, in truly terrible parenting style, I don't know who's clinic it is.

I have had a horrible day trying to chase all the follow up appts we were supposed to have had for DD. We discovered at lunchtime today that she should have gone for her echo last Thursday but nobody thought to tell us!

I had a message on the answerphone but I didn't catch the name of the consultant to whom the secretary belonged! I listened to the message repeatedly but she spoke too fast. I guess we will find out tomorrow.

I'm glad we are able to drop everything at short notice and that DH's work has been very understanding. Am terrified that they will find signs of coronary artery disease. Will we get results tomorrow? Sorry for the waffle.

[snuffy143]

Keep forgetting to ask...why does your DD see the heart people?

[saggermakersknockturnalley]

Dd has significant heart problems snuffly partly involving her left coronary amongst other things

We see Dr Wright at the clinic;he's quite sombre generally but is very straightforward. dd has also been looked after by Dr Stumper who is lovely, by Dr Dhillon and there's also a Dr Miller who I've not met. They are all very experienced.

The usual clinic routine is book in and wait. Height and weight by the nurse, wait a bit longer, ECG and ECHO, maybe chest x-ray, wait some more lol then into the consultant who'll give you the results. So yes you'll know tomorrow but I think with Kawasaki they like you to be checked on again later (?)

[essbeehindyou]

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[snuffy143]

Thnak you so much for your encouragement, Essbee and Sagger. I am a bit less anxious than I was when I woke up this morning. I've been busy planning with DD what we are going to take with us to keep busy while we wait! She seems cool about it. I am SO glad that we will know today how she is doing - waiting is so hard! Appointment is 12pm so i will check in later with news. Thanks again.

[PandaG]

First time I've seen this thread Snuffy. You know my thoughts and prayers are with you and DD. THanks fo ryour wise words yesterday.xx

[saggermakersknockturnalley]

Good luck snuffly.

[CaptainDippy]

Haven't any more info for you; but just wanted to let you know tht I am thinking ofy ou and praying for you, esp your DD. xx

[Highlander]

kids can grow out of this. DH sees a lot of patients who clearly, having angiograms later in life, have had undiagnosed Kawasaki. A history often reveals a nasty viral illness in childhood.

[Highlander]

hasten to add that the angio would be for heart disease in 50's/60's with an obvious cause - obesity and smoking.

[snuffy143]

Hi Folks. Thanks for the support. Your desc of the system at BCH, Sagger, was absolutely spot on. Booked in, had ECG, saw doc (Dr Dhillon's registrar - v. nice) who did the echo.

The result was exactly as we hoped - no sign whatsoever of coronary artery disease! Hooray! And doc thinks she will be fine. Another echo in 4-6 weeks and then 6 months but all precautionary.

We are SO relieved. She just wants to get back to swimming and ballet! We went to a Chinese buffet in Birmingham to celebrate and she tried far more things than she would normally try - something about tastes changing, Essbee??!

We are very grateful to all the medics for speedy diagnosis and treatment and I am grateful for the support here. Now we just have eye consultant and follow up paediatric appointments to go! And DD needs to just start looking a little bit more perky! Thanks again!

[saggermakersknockturnalley]

Fab news snuffy