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.

Oh, if your little one is on aspirin ir another blood thinner then you are probably going to want to tell anyone who is taking care of them because they can bruise really easily and bumps to the head can be more serious so they will want to look out for this. My daughter had a minor bump on the head while on aspirin and ended up with a huge bruise!

I can think of two reasons to not keep this secret. Three actually.

1. It's not shameful so has to be hidden away.
2. It may be genetically relevant for family to know for their own children. Family history matters!
3. As the parent of a child on similar medications, I've never found a time it wasn't necessary to tell people something, because how are they supposed to know how critical illness can be to your child and that you're not just a fussy parent? If I want people to stay away when they are sick so as not to infect my child, they need to know just what their not doing so will do to my child. Even then, it's hard enough for people to 'get it'.
4. Ok, 4. Your child will benefit from the support of the extended family.

You'll have to see how your own journey unfolds but with immune suppression like that, it's going to be hard enough when people know and (sort of) get it. It's an ongoing battle with an immune suppressed child because the world doesn't stop for that sort of thing. Oh, you're not stopping your life for a cold? My child is now in hospital, thanks.

Exactly and it will lead to your daughter feeling concern and shame over her health.

It still could back fire on the ops child if family members don't understand why op is so strict with giving her sweets. She may get a few sweets given to her and she may or may not eat them. It's left to the child to decide whether she eats them or not.

I am deaf in one ear I let everyone know my disability and my parents did as well it's nothing to be ashamed about. It's about protecting the child and less about the parents feelings. It's who I am and I have to make adjustments in order to hear people. If family members don't know about ops daughter then how can they make adjustments to suit her needs. The important person now is the child not the parents feelings over how she will be treated differently. The Paralympics is coming up should they feel different even though they are competing?

Whether the op likes it or not adjustments has to be made and she has to inform people. What if her daughter wants to go to a relatives house for the afternoon or stay over. She may stay at a friend's house will the op say nothing?

O was diagnosed with epilepsy in my teens My mother tried to keep my diagnosis secret which caused endless problems for me the truth would have made life easier !

You are "covering up", so do not worry about being seen as though you are - it is the reality.

The priority would seem to provide the right level of information that will create a situation where your child is less likely to pick up an infection.

I am sorry you are facing this illness in your child.

If you have extended family who prefer to make drama out of this sort of thing rather than be supportive, I can see where you’re coming from. But I think it will be difficult to keep up normal relationships and hide it since it sounds like it’s going to require some significant lifestyle changes and your DC may need some special treatment. Distancing yourself from them is probably going to be more effective than coming up with lies, half truths or obfuscation about why they can’t visit/she can’t have X/you’re all doing Y/etc.

if you were sick and not able to take of him/her everyone needs to know if there is a problems hiding medical things is not good for the babe

Why ask then if you are well aware? Ask a question and it will be answered.

If anyone knows, word is going to get out. You may as well be upfront about the diagnosis. I'm sure everyone you know wishes the baby well. Don't worry about what others think or say. You really can't control it.

I understand what you're trying to do, how you feel it's her personal information. Besides those adults it's necessary to tell it's up to my kids who they chose to scare they're Autistic with. It's not my information to tell, but the adjustments they need and the extra support are things I can deal with and make happen behind the scenes.
If she has to be really careful with diet and infection exposure I think you're going to need to tell her sooner then you think. Like a child who has life threatening allergies she'll need to know that these things are vital.

You'll need anyone who sees her semi regularly to be extra vigilant about illness and they'll only do that if they know how big the risk is. If you need them to cancel at the earliest sign of any possible illness that's only going to happen if they know why. If extended family sneak her treats will that be an issue or is it OK on occasion? If it's not ok at all they're going to need to know or people will sneak her treats thinking you're just being strict.
I think telling everyone at once with an email summary as PP suggested is a good idea. Control the flow of information. Then I'd potentially ask one of your parents or siblings on each side to be a go to point for extended family if she's hospitalised in future, so you can update them and not get swamped by responses.

I don’t get your reticence about letting all of your family know. Surely your child would be safer if everyone knew how serious illness could be for her, since a little ‘throat tickle’ etc might make them think twice about contact with her. She will need to tell people to protect herself as she grows-up.

Perhaps you don’t want people to know because you ‘don’t want this diagnosis to be real’ and you are avoiding coming to terms with it.

I am sorry your child is poorly and you are going through this. You must be utterly anxious and overwhelmed by it all. I can imagine a thousand thoughts are running through your head, but I think you're being ridiculous and dangerous.

Everyone she comes into contact with should be told. You can debrief them so they all understand the situation. Those who show their true, sensationalist colours can be cut off. Is this where you get your own sensationalism from?

You're treating your child like she has the plague. Kawasaki is caused by infection, but is not contagious. Yes, it's not a nice thing to have but with treatment your child will be OK. It's a form of Vasculitis (something I myself have). It's not a huge secret, like HIV might have been in the 80's.

Telling them and giving them relevant information is the best option.

IMO

We have told my parents and ILs (DC's grandparents) and my siblings and DH's siblings (DC's aunts and uncles). And so we have a good support system there.

However I don't now want to tell everyone I know eg. My own aunts and uncles etc.

So you're expecting your parents to lie to their siblings when they ask what's wrong with your DD? Which they will if they're told that she's having to be kept away from them for her health/she's on immunosuppressants.

I think you just need to tell people.
We're being covid cautious due to me having ME/CFS, people accept it.
We have made adjustments to our life, it seems like you may need to consider this long term too.
We have HEPA filters at home, open windows if we have visitors, ask visitors to do a covid test beforehand or see them outdoors.
The adults in the house wear masks in indoor public spaces. We also use antiviral nasal spray
Your biggest challenge is school/nursery, HEPA filters are your best bet there to reduce infection risk (worth speaking to your MP about this).
Good luck I hope you're able to navigate it all.

My experience of having had two children develop serious conditions is some members of family and friends will be amazing support, and others aren’t built that way. They will say the wrong things and be insensitive and then they will simply forget! Like other posters, I think you are setting yourself up for problems in the future if you are not upfront now. Sensitive people will take their cues from you on how to treat your child, and others will simply not remember. Sending strength to you and your family

Stupid and dangerous

Unless Great Aunties and Uncles are likely to be babysitting, it's not dangerous.

However I understand the Ops desire for privacy for her child but I also feel too many people already know for it to be a secret.
Do we honestly think none of the DGP are going to tell their friends or siblings - people who probably already know the child has been in hospital and people who the DGPs have probably already shared their worries and concerns.

But you are hiding something about your DC! Why wouldn’t you want people to know? Surely they would be supportive, especially with the being healthy part - otherwise you are going to have to make so many excuses in the future, which just seems, well, a bit weird