s/o Sharing Medical Info With Our Kids

[SKL]

A spinoff to the financial thread - do you tell your kids all about your private medical information?  What are the limitations to that in your household?  And a different but related question - do you share their medical / psychological diagnoses with them?

My kids are 11 and 10.  I do not share scary things about my health, because at least one of my kids has anxiety about me dying.  Earlier this year I had a strange experience that seemed like it might have been a heart incident (it probably wasn't).  Neither my kids nor any family members knows about that.  My kids do know that I have been getting cancer screenings etc. because of my age, and the minor stuff like needing to take more vitamin D and having pains in non-vital locations.

 

As for my kids' issues, thankfully they don't have any diagnosed problems, but I have shared with them some of the genetic information that explains why they have some difficulties.  I have shared psychological test results that I've received, though these are not particularly interesting in our case.  If I learned that they had something scary, I'm not sure how much I would tell them at this age or younger.  Also I'm not sure how much "genetic tendencies" to share.  Meaning, what they are most likely to struggle with in old age, what may be genetically influencing their personality, etc.

[Alice]

Yes, in an age appropriate way. I would also take the kid’s personality in consideration and how much of an impact it would have on the family. I think there are so many factors it’s hard to say “yes†I tell everything or “no†I keep it secret. In general, I tend to think more information is better. I think adults should share with kids but work to not make it the kid’s emotional burden...if that makes sense. 

 

For example, I had a small scare at a mammogram back when my boys were 5 and 2. I didn’t tell them about that then. It turned out to be nothing. If it had been cancer I would have told them, but in a way that tried to inform them but not overly scare or burden them. If I had the same issue now on a mammogram I might tell them. I probably wouldn’t sit them down and make a big deal of it but I wouldn’t deliberately not tell them. I have one kid who worries a lot more than the others and I’m probably more careful with how I share info with him. 

 

We have a lot of mental health issues in my extended family. Not me, but multiple relatives struggle with addiction and depression. I have told them about that. I explained it’s why I don’t drink alcohol at all. I also explained that depression is genetic. I don’t want them to worry about it but I also want them to be aware. 

 

I have a few patients who have serious medical issues whose parents have not told them. I can’t tell details here about the specific diagnoses but I passionately disagree with this approach. I understand that the parents all want to spare their kids worry but in all these situations I’m fairly sure the kids know something is wrong. I think the kids probably feel more weird about it knowing that something is wrong and that it’s so bad that their parents won’t tell them.

 

Similarly, my Dad’s mother died of cancer (probably ovarian) when he was 18. She never told him she had cancer or that she was dying. There was just this attitude that you didn’t talk about stuff like that. I think it’s something that still affects him today. 

Edited November 22, 2017 by Alice

[Arcadia]

Things like drug allergies we do share as early as possible on my side of the family because there is a strong chance of hereditary. My mom, her sister and me all have penicillin allergy with different intensities.

 

My friend is bipolar and she will tell her child when she is older. She doesn’t know if her child might be bipolar too but she thinks it is possible.

[MEmama]

Yes and yes!

 

Health history is so important. How are people expected to navigate if they aren't given the tools?

[lllll]

nm

Edited November 27, 2017 by _______

[kewb]

Having a parent with a chronic illness means you talk about a fair amount of medical stuff. More basic when they were younger but much more depth when they hit the teen years. Since certain cancers run on dh's side of the family we discuss the importance of early testing for them.

[PinkyandtheBrains.]

I do. They need to know in case there is an emergency, and they need to know for their own health history. 

[Pawz4me]

Yes, of course.

 

And of course in an age appropriate way.

[Elizabeth86]

I imagine I will. I don't have any medical issues to speak of right now though. I share every appropriate detail of my pregnancy with my 6 yr old ds as he is fascinated. He can tell you how far along I am and dh can't. He knows the baby is in my uterus, he was alarmed with it being in my belly the stomach acid might digest the baby. I read to him what is going on with the baby week by week and all.

 

I was super young and I remember my mom talking about her going thru menopause. She shared everything and I imagine I will too.

[creekland]

We never had health issues when our kids were young, so I can't really say what I'd have done.  They did grow up knowing heart issues and diabetic issues ran in our family and we chose our eating habits accordingly.  (They're also pretty darn healthy eaters now too, so they picked up good habits.)  They also grew up knowing their grandpa (my side) was mentally ill.  There's no way we could have hid that from them.  Well, I guess they could have just thought he's mean or strange, but we opted to explain instead.  Later on in a Psych class in high school, youngest came home telling me they'd covered "The Grandpa Chapter" today so it made sense to him.

 

Fast forward to my medical issues now and in the recent past, and yes, we've told them.  I see no reason why we shouldn't.  I don't call them up and tell them daily details, and no one knows the rare things that crop up and may or may not be issues as "I" need to know they are issues first, but once something is known, yes, it's shared.  It's just shared after I process the info myself.

 

Youngest son is very likely high functioning on the Aspie scale.  We've opted not to do testing, but in high school I let him know my thoughts.  He was very grateful, telling me he'd always wondered why he was weird and not like other kids.  Once he knew, he felt he was "normal" in his own way.  I wish I had told him much, much earlier instead of having him deal with thinking he was totally alone.

[Lanny]

Allergies and genetic things in the family should be disclosed, IMO.  If there is a Hereditary disease in the family, those who might eventually have that should know about the possibility so they can be screened.  

[Element]

Re: Do I share their medical info with them? Absolutely. My children have a range of physical and developmental conditions. Knowing what's going on in their own bodies/minds has been more helpful than harmful. I have one exception to this pledge of openness: When dd was 10, we were told by an electrophysiologist that her cardiology team suspected she had a rare genetic condition (CPVT) which could shorten her life considerably. I did NOT tell her this. I told her she had an arrhythmia which they were trying to figure out (true.) She went back for a stress test a week later and they determined she did not have the genetic condition.  

Re: Do I share my own medical info with them? I do, but I've never had anything serious going on with my health. I would probably tell them that as well, once something had been definitively diagnosed. I might not tell them during the diagnostic period. 

[Butter]

Yup and my parents share everything with me (I have medical power of attorney that is written to activate in certain circumstances, but that means I need to know everything about their health just in case and also their wishes).

 

My daughter has a bunch of chronic illnesses.  Health is a common topic in our house.  Tomorrow is Uterus Liberation Day (aka two years since my hysterectomy).  My boys know everything there is to know about uteruses and prolapses and pelvic floor dysfunction because of that.  I was on modified bedrest for almost two months leading up to it so they'd've obviously figured out something was wrong anyway.

 

The kids all know all their own diagnoses (if any).

Edited November 22, 2017 by Butter

[Crimson Wife]

Not in general, but I've never had anything seriously wrong. I've had a few health scares but they turned out to be benign things so I didn't need to tell the kids anything.

 

The older two do know their little sister's diagnoses and the results of the whole exome sequencing genetic testing. I plan to explain it to my youngest when she's cognitively able to understand it. Right now she has a very basic understanding of her hearing loss but I don't know what (if anything) she understands about her neurological syndrome.

[Rosika]

We suffer from TMI over here. Anything there is to know we share, either directly or indirectly. Most of what is none of our business is still shared, directly or indirectly! LOL We're a family of talkers, over-sharers, and we process things by talking it out. My entire family does this, not just my small little family. 

 

I can't think of any health issue my kid had that I'd feel comfortable keeping from him. But I can't say for sure, having never been there. We didn't tell my husband's grandmother when she developed breast cancer because she was already suffering from Alzheimer's and they didn't plan to treat her cancer. I felt very yucky about that decision, and I don't know if I'd make the same one for someone in my own family. But I went along with it. We didn't tell the kids. I think my oldest two knew just because they were teenagers and better at eavesdropping on late night adult conversations. 

 

I can't think of any health issue of my own that I'd keep from my kids, but again I can't say for sure. I would tell my older kids if I suspected something (say, waiting for biopsy report or something) because none of them have anxiety issues and I'd really want their support. On second thought, in a situation like that I may not tell a child who didn't live locally (there's nothing they can do, so I feel like it'd cause more problems for them than I'd get in support. The trade-off may not be worth it.)

 

My ex-husband has addiction issues in his family tree. It's affected his choices as an adult, so it's good he knew. We're open with our kids about issues like that, and of mental issues (including depression.) We hope the knowledge will lead to them understanding certain family "things" and to make informed choices of their own.

[TechWife]

Sharing medical info at age appropriate levels is completely normal. My sons medical history is more complicated than either of ours, though! I just really help he remembers enough about his own history at this point!

[Crimson Wife]

Before I had my first appointment with my reproductive endocrinologist, I had to ask my mom about her perimenopausal and menopausal experience and that was embarrassing. It’s so personal and because she does not know we are trying to have another baby I had to come up with a plausible reason for why I wanted to know (I blamed it on mid-cycle bleeding, which I have had some of recently).

 

 

Sent from my iPhone using Tapatalk

[abba12]

My husband and I both have chronic illnesses and I have a genetic disability, along with assorted other medical issues. They, in combination, are serious enough to impact our kids daily life and cause it to look somewhat different to their friends lives. For this reason, not telling them was never an option. We decided it was something we just wanted them to grow up knowing, no big reveal or conversation, we wanted it to be something they just always knew and added details to as they got old enough to understand. This seems to be working for us at the moment, I can't say there's been any real disadvantage to telling them, and it's allowed us to reassure them during hard times. 

 

When I was 3 my baby sister died (lived 7 1/2 weeks), and I wasn't allowed to see or know most of it at the time and I was handed off to relatives a lot at a moments notice. I suppose it makes sense for a 3 year old, but it had a serious impact on me, and I believe it was not the right decision on multiple levels, for multiple reasons. As a result, when I suffered a ruptured ectopic pregnancy last year, we made the decision to bring the children into the ER, and the doctors even allowed them to walk me to surgery prep. I explained the ultrasound and the IV and a simplified version of what was happening (they knew I was pregnant because we didn't know it was ectopic until week 8, and I had hyperemesis in my previous pregnancies so waiting until the second trimester to say I was pregnant wasn't really an option to us.). By being open with the kids and bringing them in it made an extremely frightening situation of mummy being rushed to hospital into a calmer one. They understood I was being cared for, they saw the doctors and the big decisions being made quickly, they saw reassuring faces saying it would be ok, they saw real things happening, not a big scary cloud of 'what if'. While it was a horrible experience no matter what, given that they knew I was pregnant already I feel, a year later, that it was a great decision to make. I was worried about nightmares or residual fears from having witnessed me going into surgery or the chaos of an ER (I was in the resuscitation ward so the scarier part of the ER), but that never happened. They talk about that day, and even the baby passing away, very calmly, some emotions of course but it's a topic we can and do discuss from time to time as they process it. And in that moment, they weren't worrying and panicking, they went to the park with daddy and talked to him and played and were a reassurance for him through it all (I had a weird rupture, the chance of death was on his mind, though he never said that bit specifically to the kids). They completely understood everything after the surgery, my recovery and all those things, in part because they knew what happened. It was important for our family and definitely the right decision for us, but I understand it wouldn't be for everyone, one of my friends is horrified we took them with us to hospital. 

[Mergath]

Of course. I don't know how we would even hide dh's and my medical issues, given that we're all together so much. And I'd have to outright lie to older dd if I didn't want to tell her about her genetic disorder, which I would have no reason to do.

[historically accurate]

Yup and my parents share everything with me (I have medical power of attorney that is written to activate in certain circumstances, but that means I need to know everything about their health just in case and also their wishes).

 

My daughter has a bunch of chronic illnesses.  Health is a common topic in our house.  Tomorrow is Uterus Liberation Day (aka two years since my hysterectomy).  My boys know everything there is to know about uteruses and prolapses and pelvic floor dysfunction because of that.  I was on modified bedrest for almost two months leading up to it so they'd've obviously figured out something was wrong anyway.

 

The kids all know all their own diagnoses (if any).

  "Uterus Liberation Day"  :lol:  I love it.

 

 

 

We share pretty much everything with the kids. All of them grew up knowing my cancer history - hard to hide when you're having multiple surgeries, etc. within a year. They all know each other's medical history as well. Oh, the only thing I can think of that hasn't been shared with any of the kids is an IQ score from when one of the kids went through neuropsych testing for learning disabilities. All of the other aspects of the testing are common knowledge though.

[medawyn]

We haven’t yet, but we plan to. Since my oldest is not even 5, not much is relevant. But I think it’s incredibly important for my kids to know that there is a genetic predisposition to addiction on my side of the family and that DH has ADHD. Fortunately DH and I are currently very healthy, but any medical conditions that might impact our kids’ daily lives or their own potential medical histories we plan to be very transparent about in age appropriate ways/times. We also think preventative care is extremely important, so we currently discuss medical/dental checkups and procedures (and prenatal appointments) with some regularity.

[HomeAgain]

We share decisions that would affect them.  They know about my breathing problems because that affects what I can do.  But mostly, that means surgeries and death plans.  We've talked a LOT about death plans so everyone is on the same page and understand where to find the documents they would need to help them.  Neither dh nor I believe life is sacred above a natural death - meaning, please don't keep us alive artificially.  Take us off life support, donate our organs to someone who would benefit, and cremate what's left.  Then scatter our ashes.  And if our children are under 18 and don't have a plan, that is what will happen to them.  Our oldest doesn't want to be an organ donor which just kills me, but it's his wish.  I'm hoping it'll change as he gets older.

[Carrie12345]

Lots of variables.

We haven't told the kids about all of dh's medical testing last year because the two of us have spent more than a year without any definitive answers. My kids don't need that limbo. We hope to hear an all clear in a few months. If not, the kids will need to know. Otherwise, what's the point of scaring them for nothing?

 

They know I had my appendix removed as a kid, because other people's appendectomies have come up. I haven't told them about my ruptured ectopic pregnancy because, again, why? It will become relevant eventually.

 

We do talk about mental health, because it's a very real thing in our lives.

[rainbowmama]

Once a kid has a firm diagnosis, yes, we share it with kids.

 

I don't share medical information with my kids. They are very young. They don't need it for medical histories yet. I suspect I will share more as they get into their teens.

[G5052]

nm

 

Edited November 24, 2017 by G5052

[SparklyUnicorn]

This has never really come up.  I can't fathom a reason I wouldn't tell them though.

 

 

[Petrichor]

It hasn't come up yet, thank God.

 

I imagine I would tell them if it was something that would affect them. 

 

Well, now that I think of it, I suppose the only way I can relate to this is pregnancy. DS doesn't know about my struggle with infertility, but when I got pregnant with his sister, he found out the same day that DH and I did. I know that is something that some people keep from their children until the 3mo mark.

 

 

[Elizabeth86]

We suffer from TMI over here. Anything there is to know we share, either directly or indirectly. Most of what is none of our business is still shared, directly or indirectly! LOL We're a family of talkers, over-sharers, and we process things by talking it out. My entire family does this, not just my small little family.

 

I can't think of any health issue my kid had that I'd feel comfortable keeping from him. But I can't say for sure, having never been there. We didn't tell my husband's grandmother when she developed breast cancer because she was already suffering from Alzheimer's and they didn't plan to treat her cancer. I felt very yucky about that decision, and I don't know if I'd make the same one for someone in my own family. But I went along with it. We didn't tell the kids. I think my oldest two knew just because they were teenagers and better at eavesdropping on late night adult conversations.

 

I can't think of any health issue of my own that I'd keep from my kids, but again I can't say for sure. I would tell my older kids if I suspected something (say, waiting for biopsy report or something) because none of them have anxiety issues and I'd really want their support. On second thought, in a situation like that I may not tell a child who didn't live locally (there's nothing they can do, so I feel like it'd cause more problems for them than I'd get in support. The trade-off may not be worth it.)

 

My ex-husband has addiction issues in his family tree. It's affected his choices as an adult, so it's good he knew. We're open with our kids about issues like that, and of mental issues (including depression.) We hope the knowledge will lead to them understanding certain family "things" and to make informed choices of their own.

:lol: we are oversharers too.

[Lizzie in Ma]

Having chronically ill children, they know a great deal about medical issues.  Theirs and mine.  I didn't even know until youngest was diagnosed that my lifelong chronic pain was from Ehler's Danlos hypermobility type.  I was diagnosed alongside my daughters.  The three of us also have thyroid issues.

 

After the hell we went through with mental illness this year, my niece has finally gotten help and it turned out she is bipolar, but I don't know if that runs in the family, it was never talked about. I think maybe because we were open and honest with our youngest's struggles, my niece finally reached out for help as well.

 

My son in law, who has been struggling greatly with depression and anxiety was never told until last month that it runs in his immediate family.  I was so angry, all this time he had no idea.  He should have gotten help years ago.

 

I do think it is good for them to know at an age appropriate level. 

 

 

[Crimson Wife]

 Well, now that I think of it, I suppose the only way I can relate to this is pregnancy. DS doesn't know about my struggle with infertility, but when I got pregnant with his sister, he found out the same day that DH and I did. I know that is something that some people keep from their children until the 3mo mark.

 

Considering how sick I get in the first trimester, I don't know how I'd be able to hide a pregnancy for 3 months. I'm not planning to tell the kids that we are trying, however. I've deliberately chosen to continue taking a regular women's multi plus extra folate rather than prenatals since I don't want nosy questions or comments.