Family health or medical history document for kids

[Bambam]

With my oldest leaving for college in the fall, I thought it would be helpful to create a family health history document for her.

 

Has anyone done this? Did you just list family members (Mom, Dad, Siblings, maternal grandparents, paternal grandparents, ?) and then what conditions/diseases they had along with what age they were when it was discovered? Or did you list conditions and who/relationship/age when discovered?

 

The CDC seems to have a database for keeping that information, but I'm not interested in that option.

[gardenmom5]

I haven't and no interest.

 

I can see if there is something with which to be concerned.. . eg.  seizures, the student tending to run high fevers when ill, etc.   but most things aren't a concern for this age, and it would feel like a privacy violation.

[TechWife]

I think this is a really good idea. My son is a fresh,an and due to some unexpected health problems he has had to fill out his medical history several times. I would create the list by diagnosis because that is the format I've seen on various doctor's office forms through the years. He would be less likely to miss something if it were in that order, I think.

 

 

For example:

 

Colon cancer: maternal grandmother; maternal great-uncle, maternal great-grandfather

Heart attack: paternal grandmother, paternal grandfather

High blood pressure: father, maternal grandmother, paternal grandmother

Rheumatoid arthritis: maternal aunt

 

If you have the approximate age at which the diagnosis or onset occurred, that might be helpful, I'm not sure. Don't forget to include mental illness diagnoses. If your soon to be college student hasn't been aware of those illnesses within the family, now is a great time to discuss them in a respectful manner that protects the dignity of the family member.

[TechWife]

I haven't and no interest.

 

I can see if there is something with which to be concerned.. . eg. seizures, the student tending to run high fevers when ill, etc. but most things aren't a concern for this age, and it would feel like a privacy violation.

I don't understand this. Family health history is of great benefit when doctors are looking at a medical situation. My son had a serious illness this semester and had the doctors not had a good medical history, they would have put my son in a much lower risk category for certain illnesses. This would have been detrimental to his immediate treatment, recovery and follow up treatments. Thankfully, he had the foresight to text me with the doctor's questions while he was at student health.

[happypamama]

I actually think it's a great idea, because you have to fill out that stuff all the time, and it might be nice to have it all written down for a young adult.  For a girl who could potentially become pregnant, it would be especially helpful to know if there are possible issues that should be handled a particular way.  There are many things that are not exactly private (ie a grandparent has diabetes) but of which a young adult might not be acutely aware.

[marbel]

I've got some pretty much like what Techwife describes above, ready to go for my kids.    They will need it when they start seeing doctors on their own; it's one of the forms they will have to complete.

[Janeway]

I don't think she needs one at her age unless there is something that could affect her now. At this age, if she is having some serious, in depth testing for something, she will likely come home, or at least call. When they are in college, they have roommates, they are in the dorms, etc, I would not want that floating around. I know she might be across the country. But I would not send anything with her like that. You can make it and keep at home and when she graduates and has her own place give it to her. But I would not send it with her now. She does not need to know Grandma had a stroke at 70 and Grandpa had diabetes in order to get a sinus infection treated at the student health center.

[Murphy101]

I haven't and no interest.

 

I can see if there is something with which to be concerned.. . eg. seizures, the student tending to run high fevers when ill, etc. but most things aren't a concern for this age, and it would feel like a privacy violation.

My opinion too. And family medical history is often notoriously inaccurate. Drs don't determine what you have based on it. No matter what the family history, they are going to go through the same process of elimination and testing bc that's the way to be sure about what the actual patient in front of them has.

 

I's make sure the school and the student have the student's personal medical history and leave it at that.

[gardenmom5]

I don't understand this. Family health history is of great benefit when doctors are looking at a medical situation. My son had a serious illness this semester and had the doctors not had a good medical history, they would have put my son in a much lower risk category for certain illnesses. This would have been detrimental to his immediate treatment, recovery and follow up treatments. Thankfully, he had the foresight to text me with the doctor's questions while he was at student health.

 

things that could be a risk I can see.

 

things that happen in the elderly - (genetically predisposed tia's run in my family - but those are only in those above 70.)

 

I'm very uncomfortable  with electronic medical databases  that can be mined from off site.

[TechWife]

My opinion too. And family medical history is often notoriously inaccurate. Drs don't determine what you have based on it. No matter what the family history, they are going to go through the same process of elimination and testing bc that's the way to be sure about what the actual patient in front of them has.

 

I's make sure the school and the student have the student's personal medical history and leave it at that.

Not true. They will prioritize their tests based upon risk factors. The faster the correct diagnosis is determined, the faster the appropriate treatment can start. Delays in treatment can have life long consequences.

[J-rap]

I think most clinics nowadays are trying to gather this information to keep in patient records.  Perhaps not quite as in-depth as you're stating (age of onset, etc.), but at least a general record.  I believe many of these records are then accessible online, either by other clinics or on the patient's portal.

[Murphy101]

Not true. They will prioritize their tests based upon risk factors. The faster the correct diagnosis is determined, the faster the appropriate treatment can start. Delays in treatment can have life long consequences.

Well not true right back at you I guess. *shrug* Ime, they will do batteries of tests according to standard protocols for what the patient is presenting with unless the medical history is directly the childs or their biological parent. Because further back than that, it's just notoriously inaccurate.

 

My mother lived with me while dying of cancer, I'm very familiar with her medical dx, but all three of my siblings would fill out differently for her medical history. Bc of heresay, arm chair dx and misunderstanding.

[TechWife]

Well not true right back at you I guess. *shrug* Ime, they will do batteries of tests according to standard protocols for what the patient is presenting with unless the medical history is directly the childs or their biological parent. Because further back than that, it's just notoriously inaccurate.

 

My mother lived with me while dying of cancer, I'm very familiar with her medical dx, but all three of my siblings would fill out differently for her medical history. Bc of heresay, arm chair dx and misunderstanding.

 

Inaccuracies occur because people don't write things down and rely on their memories or stories they have heard. Write it down, share it with your children. Stop the inaccuracies. 

[SKL]

I got that information just from talking to my parents and other family members.

 

For my kids, they are not biologically related to anyone whose history I know, so they are on their own.  :)

[marbel]

Inaccuracies occur because people don't write things down and rely on their memories or stories they have heard. Write it down, share it with your children. Stop the inaccuracies. 

 

Right! 

 

I know nothing about my grandparents - probably most people of my generation don't either.   But I know for certain that my FIL had colon cancer, my kids' paternal aunt had melanoma (an aunt may not matter, I know) and my mother had congestive heart failure. These are facts. It doesn't matter so much that my dad died of liver and kidney failure, because those were caused by his alcoholism, though it can't hurt for my kids to know - for a fact - that their maternal grandfather, maternal uncle, and maternal first cousin are or were addicted to alcohol.   If doctors want to disregard the information, fine.  But at least it's available if anyone wants it.

[Murphy101]

Inaccuracies occur because people don't write things down and rely on their memories or stories they have heard. Write it down, share it with your children. Stop the inaccuracies.

Writing it down doesn't make it true or accurate, just a version written down.

[TechWife]

Writing it down doesn't make it true or accurate, just a version written down.

 

Only write what you know to be true, and you have an accurate medical history. It may be incomplete, but it will be accurate. 

[Murphy101]

Only write what you know to be true, and you have an accurate medical history. It may be incomplete, but it will be accurate.

You aren't listening to me. Of course I would write what I think is true. So would all three of my siblings, all of which would not be the same as mine.

 

The problem isn't outright lying.

The problem is most people don't know how inaccurate their knowledge of their relative's medical history is, even if it's close family.

[brehon]

You aren't listening to me. Of course I would write what I think is true. So would all three of my siblings, all of which would not be the same as mine.

 

The problem isn't outright lying.

The problem is most people don't know how inaccurate their knowledge of their relative's medical history is, even if it's close family.

I really think this is family dependent, though, especially if relatives of an older generation are still alive (and cognizant). My brother and I would write almost exactly the same things for our family medical history. The only differences would be age. And, yes, they would be accurate.

 

Of course, if you don't know your family's medical history, then you don't know it. However, for certain disease processes doctors (at least the good ones) absolutely *do* want to know about family medical history -- many types of cancer (breast and colon being the 2 most common); heart disease (to include age of onset & age of 1st heart attack); high BP; even strokes have genetic components . Having this info doesn't mean a doctor won't do the requisite tests; it means that there are more pieces of the puzzle known which can help guide doctors' thought processes and, even more important, a person's lifestyle habits (smoking, drinking, diet, exercise, etc).

[Joker]

You aren't listening to me. Of course I would write what I think is true. So would all three of my siblings, all of which would not be the same as mine.

 

The problem isn't outright lying.

The problem is most people don't know how inaccurate their knowledge of their relative's medical history is, even if it's close family.

I agree this must be family dependent. My family has always been extremely open with these things. They are just not seen as secretive or private. My siblings and I all have the same information and recount it the same. My dds are already well aware of their family history and I feel that is a good thing.

[TechWife]

You aren't listening to me. Of course I would write what I think is true. So would all three of my siblings, all of which would not be the same as mine.

 

The problem isn't outright lying.

The problem is most people don't know how inaccurate their knowledge of their relative's medical history is, even if it's close family.

 

The problem is communication, actually. Like others have said, information sharing is family dependent.  I do know what the cause of death was for all of my grandparents. I also know some history on my aunts & uncles. I know quite a bit about my siblings health and I know why my brother died. For my husband's family, I know how both of his parents died and quite a bit about their prior medical history. I also know why his brothers died (one of the deaths has a definite genetic component) and I know a bit about their medical histories as well. 

 

This information gleans three different multi-generational health issues and one genetic issue. Yes, the doctors pay attention. One of the causes' of death is actually justification for the insurance company to pay for early cancer screenings, which I have made use of and will continue to make use of. 

[Arcadia]

Drug allergies, food allergies, asthma, thyroid and any medical issues that are genetic (runs in the family). My aunt and mom have severe penicillin allergy so that was useful for me to know since penicillin is often prescribed.

[OneStepAtATime]

Writing it down doesn't make it true or accurate, just a version written down.

Wait, I'm confused.  I agree that frequently people don't accurately remember their family medical history.  I thought that was what the OP was trying to avoid, misinformation.  If you take the time to research the information through reliable sources and write it down ahead of time while you actually have the time to do so, wouldn't the chances increase significantly that the information would be much more accurate than if you are scrambling to try and remember during a medical need and may not even have those resources available to refer to?

 

 I wish my parents had bothered to do this for me when I was in college.  It would definitely have helped when I was filling out forms to go see a doctor and it might have helped the doctor look into the right medical condition much sooner.

[Lizzie in Ma]

We keep a document like that in Dropbox so anyone in the family can access it as needed in a shared folder.  That way it isn't somewhere anyone else can get to it but it is accessible as needed.

It also has current medication and health insurance information for each family member so whoever goes as advocate has it handy.

Edited April 17, 2016 by Lizzie in Ma

[Murphy101]

It can be family dependent, but it's a wide enough and common enough problem even in families that seem to communicate well that it's usually considered not to be factual enough for it to affecting testing protocols ime

[marbel]

It can be family dependent, but it's a wide enough and common enough problem even in families that seem to communicate well that it's usually considered not to be factual enough for it to affecting testing protocols ime

 

Then why is there even a page for it in new patient registration forms?   Why are we spending time filling out family histories if it doesn't make any difference?  Doctors offices like more paperwork?

 

(Not being snarky. Seriously curious why they bother gathering the information if it's useless.)

 

[Murphy101]

Then why is there even a page for it in new patient registration forms? Why are we spending time filling out family histories if it doesn't make any difference? Doctors offices like more paperwork?

 

(Not being snarky. Seriously curious why they bother gathering the information if it's useless.)

 

It's not entirely useless. It's more of a point of interest than treated as medical record. Like asking how many siblings they have. I've filled out quite a few forms that ask for the names and ages of all siblings they are living with. Why I have no idea bc it has nothing to do with their indidivudal medical care. And anything past parents of the patient is usually viewed skeptically. Most of the forms I fill out don't even ask about extended family.

[SKL]

So much of family health history is related to lifestyle choices / environmental situations that this could skew things also.

 

I'm aware of how my grandparents and many of my aunts/uncles died, issues my parents have, and the obvious lifestyle / environmental things that probably affected their risks (smoking, obesity, having been electrocuted....).  I am good at pattern recognition, so I've figured out that I will most likely die of cancer, hopefully not before my kids stop needing me.  I did use my knowledge of family history to push for an early colonoscopy.