To not want to divulge toddler's diagnosis to anyone

I feel for you. My little one has a significant life shortening condition. My family and close friends know, but I absolutely will not let it define him and we don’t tell others we don’t know so we’ll (friends of friend, school yard parents).
Thankfully, my very intuitive mum relayed info regarding DS’s diagnosis, and probably added something along lines of how much of a difficult time we’ve had, info overload etc. Relatives have been sensitive with a kind ‘how are things?’ and let me take the lead on how much we disclose. I normally give a vague response, acknowledge the positives, and look to move the conversation on.
The only ‘collective’ that I informed were my NCT group, and again, taking the lead ‘it’s a lot to deal with, probably best not chat about it when out for coffee or there’ll be tears’ type suggestion paved the way.
I would personally say take the lead, maybe even ask it’s not discussed during time with you’re ‘looking forward to seeing family’, all nicely explained in that it helps you ‘mentally switch off’, but you know it’s great to have a supportive network if necessary. Keep them quiet, avoid being caught off guard.
Best of luck.

I think you'd be better off just being honest so you can manage things a bit more.

It'll get out anyway as people will talk and the medics will likely guess.

This way, you get to control the message and give the correct information. I think trying to keep it secret will just raise anxiety and speculation.

Doctors in my extended family too OP, and I find them nosy and overbearing. Quite often disputing what my own and daughters specialists have said (in a speciality different from their own).

This is totally normal doctor (and to some extent other health professional) behaviour. Doctors just talk like this all the time, I've never had anyone for example not share why they were off sick, we spend our whole time questioning and criticizing other specialties.

Obviously you know your own relatives and whether they are horrid people but most doctors have no idea that non-doctors might think their behaviour is weird.

If there is no heart concerns at the 6 weeks echo,the chances of there being ongoing cardiac risk is minimal. As the chance of reoccurrence. Whilst she absolutely needs to be protected etc for the next 6 weeks, it really isn't necessarily a life long concern for most children. She currently has a virus, I'd wait until then so you have all the information as to whether there even is a lot term diagnosis, but if you want to keep it private, then obviously that's your right. Have you told your parents you don't want them telling wider family members?

Doctors in my extended family too OP, and I find them nosy and overbearing. Quite often disputing what my own and daughters specialists have said (in a speciality different from their own).

I wouldn’t want the narrative to be highjacked either and my daughter’s private medical history discussed by people who think they know better behind my back. Reading between the lines it sounds like your family could be like this.

Am I missing something? I just had to Google it to check it is what I thought it was…

also feel like the community I'm from is a bit sensationalist

really mean this in the kindest possible way but do you think this might have rubbed off on you too?

It’s not some embarrassing or stigma -surrounded disease. Is it? Surely you just say she got sick with this illness and therefore you need to be careful as she’s immunocompromised. And as she grows up you tell her this too and she therefore will be able to look after herself. The same way as anyone with immune issues, or allergies or whatever.

to be fair I do get it because a loved one of mine is immunocompromised and when I first found out I was really freaked out and overprotective about making sure medicine was kept properly. Over time have become more level headed and confident so it’s not such a big deal.

really the more confident you are about it, and the more chilled you are about it, the more your child will emulate that. Keeping it like some secret is just blowing it up into something it’s not.

After my loved on was diagnosed I learned actually loads of people are immunocompromised but you’d not even realise. You’re not alone. Definitely join Facebook support group and get some support from therapy or similar. It’s so scary when your child is sick and the worry of things impacting her going forward must be so stressful. Wishing you the best

If she’s in hospital has she not been treated for it? With treatment heart disease is very unlikely and you’d know immediately if her heart valves had been damaged and needed treatment.

It's worth remembering that your toddler eventually won't remember this at all. They will know they had it because you told them but that'll be it.

They really will just be doing things that all the other kids do even though at the moment you just want to wrap them up forever.

I agree with those who have said that keeping it secret might convey to your child that it's something to be embarrassed about/hide.

It will all be revealed at some point. Someone will slip up, hopefully unintentionally, and then there it goes. Having your doctor relatives in the know beforehand will be of great help to stop those that will run around with their hair on fire thinking your daughter is at death’s door.

To quote the Mayo Clinic’s website - With early treatment, most children get better and have no long-lasting problems.

Ultimately it is your family’s choice how to handle this. Hold your daughter close and give her tons of kisses everyday. We will be thinking of you and wishing you all the very best.

I would be concerned that keeping it secret and giving your DC the choice to disclose when they are older conveys it's something to be ashamed of or not to trouble others with

I think your trauma from your toddler being ill is affecting you.

Just let your parents tell every one that you can't have visits for a couple of months as your little one had had Kawasaki's and this is the doctors advice.

I know there can be issues later in life but honestly this is rare and after this storm is over, she will just be back to being a normal little girl.

Oh and doctors think it is totally normal to talk about their own and everyone else's diagnoses. They just view it as small talk. Plus if you don't tell them they will start guessing.

I think that trying to keep it quiet will inadvertently make things worse! Being open and matter-of-fact about it makes it a normal part of family life.

Tell the truth.

The more you hide it the more you give the impression it's something shameful or to be embarrassed about when it's not. Better to be up front so it's clear what family need to do to support her health

Surely you've got enough on your plate without creating additional drama in the form of a big family secret. As others have pointed out, you actually don't want her to be treated the same as everyone else. You're going to need people to take her condition into account at various points to protect her health. It's not anything she needs to feel angst over. It can just be approached in a matter of fact way.

I would just tell the family the truth. It will only become a thing if you make it one (which you are).

Some very good advice already regarding immediate response about virus & avoiding bugs. In the longer term the Drs in your family are quite likely to work things out (medical people are sneaky like that!!🤣)so you might want to approach them but ask for their discretion to limit the inter family discussion & guessing. Good Luck xx

I would expect doctors to keep it to themselves if they suspected there was more going on. Patient confidentiality and all that.

If you have told anyone, then everyone will know and those that learned "through the grapevine": they may end up making assumptions and listening to rumors which are a scenario out of your control.

I would take this as an OPPORTUNITY to EDUCATE everyone in the family! Many people do not know what you know and what is important about a disease and by you educating you can take away some the the stigma - and FEAR - of diseases. This disease does have some bit of genetic component so family does need to know.

Gosh op, must be scary for you. Dd2 was hospital once and there was a little boy of around 6 who had Kawasaki disease. He was really quite poorly and was making slow progress.

I do understand you not wanting to divulge too much, but in this case, I think you need to.

As for telling your dd, I also think you will need to tell her earlier, far earlier, than you think. My bf growing up had allergies, two of which could result in anaphylaxis. Even at age 4 she knew what she could and must not come into contact with. Children often know more that one imagines and the last thing you'd want is some cobbled-together factually inaccurate nonsense to be delivered to her by a well-meaning aunt.

Are there any organisations that cam help with framing this in a child-appropriate way?

Just tell people the truth in sense she had a viral infection that cause complications and medication has suppressed her immune system so needs to be isolated as much a possible for next two months.

Assuming you toddler was treated promptly and has no complications from kawasaki there is no reason to tell anyone outside your immediate network.

As the parent of a son with a life limiting disease (leukaemia) it wouldn't occur to me to keep his diagnosis a secret from my family. I understand the absolute shock of getting a serious diagnosis for your child, but you are setting yourself up for a lifetime of deceit, not just for you but for your child.

Tbh you've told enough people now that the rest will find out on their own anyway. It's not nice having everyone talking amongst themselves about your child's health but they're her family, they will have her best interests at heart.

I think you are being ridiculous, your child is a toddler do you expect to hide this until she an adult and can make her own decision on telling them? Do you want to go to family gathering and and keep her by your side in case they give her sausage rolls and other fatty foods Do you want to lie every time your little one is poorly. This is your family not a bunch of strangers.