KAWASAKI DISEASE - Anyone Have Any Experience of This Please????

[rockinhippy]

Details here

Sorry migraine so not able to type full explanation, but its linked to my earlier thread above.

DD now has a hospital referral to check her heart & rule this out & having never heard of it, its making for scary reading, especially as she didn't get the early intervention needed to make it a minor illness - hoping someone can put my mind at rest - I'm not normally a worrier, but I just can't hake this :/

Thanks

Hi

www.kssg.org.uk please ring them ,Sue is wonderful and helpful, number is on their website. Leave a message, she will get back as soon as she can.

They helped me so much last year when ds had a heart scan ( murmur picked up so they were checking that) and they discovered he had coronary artery enlargement due to undiagnosed Kawasaki disease that he probably had at the age of 2 ( now aged 10) so obviously he had no treatment at the time.

I know how anxious i was at the time so hugs from me.
My son saw a kawaskai specialist ( Rob Tulloh , Bristol though) and now is seen by our local cardiac unit regulary.

This forum although US based is very good www.kdforum.org

If there is anything else you want to ask please do, either here or PM.

Thank you NK3 :)

Sorry so slow to reply, I've had internet connection problems recently, amongst other things

I'm really sorry you & your DS has to deal with this, that must be so hard on you all :(

We've got our appointment through for later in the month, as of yet I don't know who the specialist is, think its general medicine so far, but we do have a new state of the art childrens hospital here, one of the best in the country apparently, so I'm hopeful we'll get good treatment as she has in the past (they've saved her life twice)

I'm torn on what to think still & trying hard to put it to the back of my mind & not become paranoid helicopter Mum & letting her carry on being her usual active self - but she is showing symptoms, now complaining of a lot of aches & joint pains etc now & skin has been a real problem with suncreams of late, even though we got by her allergy problems with Soltan & have been fine for years with that - all of a sudden shes clawing her skin off (literally :( ) after I've put it on her :(

She didn't get a fever with the first stage/illness so hoping that is a good sign - but then again her temperature wasn't high when she had double pneumonia, & I too am prone to not getting a fever when illness dictates that I should, so not really sure what to make of it

I will have a look at those sites - thank you - though trying to keep feet on the ground & not scare myself too much until I have too at the same time IYSWIM

thanks again :)

My neice in Canada had it when she was about 6. It seems to only affect yuong children. It was nasty at the time and she has a heart murmur now which has to be checked.
Aside from that, she is now a very healthy and sporty teenager.

Sorry for your Neice Tyr but really good to hear they can still grow up to live healthy & especially sporty lives - DD is very sporty, so I would hate to see that taken away from her

from whaT I've read & our GP told us - its mostly younger children that are affected, but not always, hence why they hadn't considered it when we first went to see them, but older kids can get it - but obviously its rarer still in that age group - which is giving me some hope

I just wanted to update on this - sadly we are still in limbo, though after seeing the specialist, initially I wasn't too worried - though we were told it is impossible to say whether or not she actually had KD, only that there is a possibility that she did, as her symptoms did fit the illness. He did check her heart & blood pressure thoroughly & reassured me that she is healthy now, but he also said that complications of the illness are progressive, so that does not mean she is in the clear, but is a good sign.

It was left that we are told what to look out for as far as heart complication symptoms go & that our GP has been told that any such symptoms be treat as urgent.

Though I am concerned that after been taken off her Asthma inhalers by our GP & Asthma Nurse & given the all clear some 8 months or so ago, since this illness, but before seeing the Paediatrician, she has been has put back on them due to breathlessness problems during exertion, we are waiting to see the Asthma Nurse (tomorrow) as a result, to make sure it is actually her Asthma that is causing this, if not she will be referred for heart scans & other tests.

I think if I'm honest since first posting, I've been sticking my head in the sand a bit, as I'm finding the whole idea of this a bit overwhelming :( but she has had several bouts of breathlessness in PE & the likes at school recently, yesterday at play time, not something she has had for a long time, & not as frequently before - it may genuinely be Asthma, aggravated by the weird weather we are having & dust from a local building site, but its making it hard not to drive myself nuts with worry - I think thats why I've been trying to shove it to the back of my mind

She has sports day today & after a breathless session yesterday it has hit me like a ton of bricks - which is daft, as it wasn't confirmed - though not ruled out either - just left in Limbo :(

Would anyone know if this is normal as far as the hospital goes?? - I don't want to put her through unnecessary tests at Hospital, but just wish they had sent her for the scans - hopefully to rule it out, or if not at least we would no for sure what we ARE dealing with

Mad that I actually hope the Nurse tomorrow confirms it is Asthma again

Hi rockin - so they think she may have had KD but haven't sent her for any heart tests is that right?

Personally I would insist she has the heart scan - it's called an echo, it's basically an ultrasound test and isn't invasive at all but would put your mind at rest. It's difficult as you haven't had a definitive diagnosis you are bound to worry.

Thanks for that info saggermaker - yes thats basically it, they can't say for sure either way as the symptoms had cleared up when the specialist saw her, but did agree it sounded like she could well have had it, but no test for it, so can't say either way & it was left pretty much as wait & see which TBH isn't much good to anyone

We see the asthma nurse tomorrow so I will now push for a GP appointment tomorrow too - now I know what test it is & that its a none invasive test I will insist on it - as you say too much worry otherwise - every time she's looking ill or breathless in anyway its hard not to get paranoid & think the worst

Thanks again :)

She needs an echocardiogram, harmless and painless, your dd will find it interesting, well my ds did!

The scan will show if she has any coronary aneurysms or artery enlargement and this is what needs to be checked, listening through a steposcope is not enough.
Please Please insist on the scan she really should have one.

Like your dd my son didn't receive treatment at the time so they couldn't confirm that he had it by any blood tests, but the echo showed coronary artery enlargement and that is only seen in Kawasaki disease ( cardiologist words)

So the scan should show if there is any damage and your dd will be followed up with regular scans. My son is now being scanned every 2 years and will have stress tests at 16, they will then decide where to go from there.

I know how concerned you are, i was worried sick and angry when we first found out about ds but have now come to terms with it and am relieved that he is being monitored regulary and he can receive the right treatment if he needs it in the future.

Let me know how she gets on.

Thank you NK3 - I did speak with Sue at Kawasaki Foundation & as you said she is lovely, was very very helpful & did put my mind at rest a bit as to the percentage of kids who end up with heart damage from this - I thought from reading stuff around the net it was pretty much guaranteed

between yourselves & Sue, you gave me the information & confidence I needed to push for an ECG ( I was been very dumb & forgot the echocardiogram is the short term for ECG (migraines from hell lately not helping ) - speaking to Sue who explained the illness better & other symptoms, probably convinced me even more so that this IS what DD has had.

Anyway I rang the hospital back on Tuesday, they were meant to ring me yesterday, but just as I was putting a letter together this morning the Registrar we saw did ring back -

I've got to admit I wasn't that impressed by him, as he seemed to be wanting to pass the buck of him not following normal procedure back onto me saying "well you did agree with not sending her for any tests at the appointment" - yet he still insisted that he didn't think it was for the best, as even if no heart problem showed up now, as it didn't mean she was home & dry as it could develop later

after my arguing that it was better that is is done, as it was a simple scan & being left in limbo as we are is no good for anyone, especially not DD - he complained as to why I didn't say so then I had to remind him that I am not a Dr & this is all new to me, so I had no idea of what to expect, & that I also have health problems myself, so don't always find it easy to take things in as quickly as I need to - so he then said he would TRY & put her through for an ECG, but they might refuse & asked if the did refuse what would I do then

Up to that point I had been quite polite & hadn't mentioned getting advice elsewhere - I then said that I had spoken to Kawasaki Foundation & was more convinced than ever that DD did have KD & I now knew that NORMAL procedure was to Scan & if the Scan was refused then I would be forced to take it as far as needed to make sure the scan was done.

he then back tracked by saying he was used to diagnosing & treating patients who still had the illness & that he couldn't actually treat DD as she was now symptom free & a clear scan wouldn't mean that she wouldn't develop problems later

my reminding him that I had said she'd collapsed during PE & play a School with breathlessness & that this had only happened SINCE the first rash & symptoms - round in circles a bit more but it has been left that she WILL be getting the Scan done, probably next week :) & I then have to ring his secretary to chase if I don't hear anything or don't get the results quick enough

I could have done without the stress of having to argue for it, but it least it is getting done & I hope for all our sakes - Dr included it is clear, as I might just be raising it as a complaint if not

Thanks again for all your help :)

I am so pleased to hear she will be getting a scan, and well done for being assertive and getting that sorted.

If you feel like sharing the results of her scan i would love to know how she gets on.

Take care and if i can help with anything else give us a shout.

PS - I always forget they are called ECG's as well ,shouldn't really Ds has now had 4
and i must have had about 20 myself ( congenital heart defect) so i should no better!

OP, are you aware that there is a strong link b/w Kawasaki & coeliac? KD is autoimmune and I have seen a mention of it as being a complication of coeliac disease, eg here.
Has your dd been tested for coeliac? I have also seen it mentioned on glutenfreeforum.

Also, you mention that you don't respond with raised temperature to illness when one would expect it, this could mean that your immune system is perhaps a little below par and this again could potentially be explained by a link to gluten (prolonged reaction to gluten wears out the immune cells so they don't react as strongly against true pathogens).