To not want to divulge toddler's diagnosis to anyone

My dd is immunosuppressed, she is on a weekly therapeutic chemo regime.

I absolutely get why you want to protect your child, but honestly, tell them. The stories they will cook up in their heads are far worse than the reality and will cause you far more issues and stress.

Kawasaki itself once treated tends to dissipate, but can create secondary issues (as far as I know). You need people to understand so that they think about their behaviours and adjust accordingly to help protect your child.

Hoping your little one is okay, OP. I’m not sure what the reasons are for not wanting to tell your family, but I would encourage you to tell them.

By hiding it from the world, your DC will grow up thinking it’s something to be ashamed of.

Tell them that with your daughter being hospitalised and ill, it’s been a stressful time for you all and you need some time without guests. There is no other way to do this other than feigning a holiday.

You obviously have relatives who want close contact all the time, think 8 weeks without seeing family (even when they have a lot going on) is too much, and presumably will try to invite themselves over, which isn’t particularly sensitive of them. So, you need to tell them you don’t want to.

I’m so sorry that you and your child are going through this. I think the best possible way to gain the situation / distance that you need is to be honest. Then there are no complications x

Tell them you have been told to keep your child in isolation for 2 months and that she is not to see anyone at all, not just family.

It is not HER condition. The toddler when grows up, will decide what to divulge.

What do you hope to achieve by posting this?

In the one hand Yanbu as when your toddler is older you have to think of a way to sensitively tell them about their condition. I have a six year old who had Kawasaki at 2, so I’m at the point now where I’m worrying about how to explain this to her.

on the other hand, your wider family and other caregivers probably need to know about the kawasakis. I was told, with my daughter to make anyone else who cares for her aware, in case of sudden collapse/dizziness etc. It would be useful for them to know.

I don't want it to seen like I'm covering something up in case they think we're hiding something major about DC

But you are - she is barely going to be living like a normal. care-free toddler is she? Banned from soft play, nursery, seeing family, limited experiences outside home. Sounds pretty major tbh poor kid.

I am more aware of that than you realise, but most children do not have complications and the OP's DC does not fortunately have any as yet.

I think you're creating unnecessary drama and angst here.

This isn't going to go away. You want family to keep away from her when they have viruses and you want them to be aware of her dietary requirements.

Just tell them.

Everything you are suggestive is unnecessary and will cause unnecessary stress and friction.

If she's never going to their house alone to stay over or for the day then don't tell them. You can manage it. As she gets older they may try to sneak sweets to her if they think your too strict without knowing why and she may take it to try it behind your back. You maybe overthinking it but she's your daughter and if you don't want them knowing then don't tell them.

I've seen parents who don't give their children any sugar and her friends are sneaking sweets to her child. Think about what could happen if you say nothing to your family and she eats sweets when your back is turned. Kids are fickle think carefully.

The complications it can cause can be lifelong.

You are right @Scentedjasmin there is a small risk of cardiac problems in later life but it's rare.

Also all the information we have from adults is basically not going to apply to current children with Kawasaki's as the treatment has changed - improved massively - so a child with it now should expect to do a lot better than todays adults.

Mine was in hospital for 4 months with it, and now will take immuno suppressants for life.

I don't know how you can hide that really, or why you'd want to? Surely it's in toddler's best interests for others to know in case there is a problem.

Hope you don't mind me asking -why are you talking about Kawasaki disease as if it is a life-long illness? It can be nasty but it is something that children recover from. It's not something you are stuck with for the rest of your life like diabetes.

has she had complications then? becasue children usually fully recover unless of complications. meaning she wont be in trouble or at risk of any further problems with the heart

@cloudyworld my son has a health condition OP. I also didn’t disclose to many as felt it was his personal medical information for him to choose if and when to tell others as he got older. Once it’s out there, there’s no taking it back. People start to treat people differently once they know they are ill. I didn’t want my son treated like an ill person.

Her condition is a medical reality that will require ongoing adjustments. As such, it seems wise to communicate her diagnosis with those who spend time with her. Being open about and affirming of her diagnosis is what will achieve her having the most “normal” life possible, not hiding it as though it’s a shameful secret.

I am so so sorry to hear about your son. Wishing you all the best xx

I thought that Kawasaki disease was a 'virus like' disease that usually only lasted 6 weeks or so and that most children made a full recovery from it? Have the Drs said that your child now has a lifelong heart condition?

Oh for goodness sake. It's a diagnosis. There's no reason to hide it. Jeez

Thing is though, this isn't MS or a life shortening condition. The toddler will likely get a couple of echocardiograms and then be given a clean bill of health and never followed up again.

It’s a lot for you to take on board, all the medical information, different doctors etc…
You've told enough people for now and dc has been hospitalised and needs to avoid viruses so big gatherings are out for a few months is fine. Following the pandemic I’m sure people will understand that.
You might feel differently in a few months. When my friend’s little boy was diagnosed with leukaemia she didn’t want to talk to anyone or tell anyone except immediate family. Gradually she did as arrangements for the other children had to change, she and her husband were in hospital with dc who was ill and so on. She said she felt better once she told people and it got easier.

I wish you and your little one all the best for the future. Make sure you look after yourself and get all the help you can.

OP I get it. I was diagnosed with MS years ago, and virtually nobody knows except my immediate family, my boss and 2 closest friends.
One of my biggest worries was people seeing me or treating me differently, 99% of the time you wouldn’t know, and if I have a relapse I tend to shut myself away (I work from home so it’s very easy to hide it from colleagues, it also means no absences from it)
You’re not being at all unreasonable, it’s very unfair the amount of people saying you are-because unless they themselves have been in the situation, they can only look at it from an outsiders viewpoint and judge it by how they’d feel if someone kept something from them. But the fact is, other peoples feelings don’t come into it. It’s how you as parents feel and how you think your child will feel in the future. I think it’s very considerate of you to think how your child will feel