To not want to divulge toddler's diagnosis to anyone

[cloudyworld]

My toddler has been diagnosed with Kawasaki disease. It means she has a high risk factor for getting heart disease (no matter how old she is) and so we need to be as healthy as possible from now onwards.

I have an absolutely huge extended family where we all see each other very regularly. The past couple of weeks DC has been in hospital and has been given drugs that have suppressed her immune system. We've been advised to be careful that she doesn't catch anything over the next couple of months. I have family who want to visit us. For now I can say she's a bit poorly still, but how do I fend off people for two whole months? I don't want to say anything that might be obvious that she has been treated for something other than a bad infection. We have doctors in the family too, so I don't want it to seen like I'm covering something up in case they think we're hiding something major about DC.

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

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.

@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.

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

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.

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.

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.

The complications it can cause can be lifelong.

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.

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.

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 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.

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.

What do you hope to achieve by posting this?

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

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.

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 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.

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.

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.

Your actual question was how to fend off visitors. If you don’t want to tell them the truth, I can’t imagine that you will want to make something up. Therefore you will just have to tell them that you are not accepting visitors, it’s nothing against them but you want time alone to bond with the baby. I don’t really see what else you can say.

good advice.

I get what the op is saying - my child has a condition that v few know about its not my place to discuss his condition

Someone may have posted it already but Societi is a charity for Kawasakis run by parents. They could be a good port of call for experienced support.
Hope little one is doing well.

That's what I think too. GPs are likely to tell their siblings (Ops Aunties), they are going to look daft saying "LO is now out of hospital, but DD doesn't want people to know so I'm not allowed to say what the diagnosis is"
Reality is it will be the worst kept family secret. Your own siblings are likely to tell people too.