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.

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.

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

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

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.

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

Tell the truth.

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.

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 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

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 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'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.

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.

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

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.

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).

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.

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.

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.

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

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.

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.

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

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?