If you have a teenager with a complicated medical history . . .

[Daria]

How do you help them transition from relying on you to be the keeper of all medication information, to being the steward of that information?

 

DS16 has a very complex medical history, especially for a kid who is quite healthy and active.  He's got a ton of specific diagnoses, many of which don't impact his day to day life.  Today, I took him to Minute Clinic because he needed a sports physical and I waited to long to get into the pediatricians.  They had a form with a checklist, and of course I ended up checking lots of "yes" boxes.  Do you have drug allergies (yes), have you ever had an EEG, (yes), a CAT scan (yes), an EKG (yes), surgery (yes) . . . . Lots and lots of yeses.  Then we had to talk through each one.

 

The Nurse Practitioner addressed the questions to DS, which I appreciated, but there were a bunch he couldn't answer.  Why did he have an EKG?  What did his drug reaction to X look like?  What medications did they try before Y?  How long has he taken Z?  What was the Xray of his knee for, and what was the diagnosis? What kind of nose surgery?  What testing was done after his concussion? How long did the symptoms last?  He kept saying "I don't know, Mom can you answer?" 

 

Hopefully, he'll be a college in a little more than 2 years, and undoubtedly, he'll need to go to the doctor for something while he's there.  How do I help him learn all this information, so that he can be the one to handle a new visit without?  He's fine going to his pediatrician and familiar specialists without me, and reporting on new symptoms, but that's because they already know his history so they're not asking "why did you need?", but with a new doctor he still needs me to provide the history.

 

[Penguin]

Can you write it all up for him and make a pdf of it?  I would make it very readable for a busy health care worker, though.  I would keep it succinct, and I would bold keywords.

 

Previous Injuries (type and date)

Confirmed Diagnoses

Known Drug Allergies

 

You could leave his name, birthdate, and other identifiable info off the document for privacy reasons.  When he takes it in with him to the doctor, they can scribble his name on it and stick it in his file.

[vonfirmath]

Honestly, as an adult, I wish at some point my parents had written up a small Health History thing for me to help answer all those "Which of your relatives had these health issues" Even as a 40-year old adult, I don't know many of those answers!

 

I do the best I can.

 

Could you put together a "health notebook" for your kid with their history in it, backed up with a copy electronically in case of loss? (A friend lost the bag with her son's health history in it during one hospitalization. No idea if she ever got it back. But I saw the panic first hand of not having that information backed up.)

[prairiewindmomma]

Does your kid carry a smart phone? Using the notes section of an iPhone, I'd put in the information there.  I keep a small notebook here at home, but having it on a phone is helpful in case of sudden emergency.

[Lang Syne Boardie]

My son's provider network has an app he can use to access and share his medical information. If your son's network doesn't have something similar, there are apps like MyMedical which you can set up for/with him.

[Seasider]

I have a word document with my medical history on a timeline. Each time I have a noteworthy experience, I amend the document. When I have a new event, I amend the document. Every couple of years I bring an updated copy to my physical for the files. I also bring a copy for first time appointments with new physicians. Some version if this may be helpful for your young adult.

 

Around 15, I go in with my kids to initially meet the doc and fill in the blanks for questions the young person can't well answer. Then instep out for privacy during the exam. I have also told the kids this is their time to ask the doc anything a/he doesn't want to ask me. Sometimes after talking with the patient, the doc asks me step back in if there's any course if treatment to be decided upon. This transitioning seems to have worked well. I still have one that is nervous without me, and one who has trouble knowing how to answer, but they are learning. We have some issues but nothing as complex as your circumstances.

 

When we started transitioning, I did tell the doctor up front: "Sam here will be off to college before we know it so we are working on transitioning him/her to self care." The doctors get it and actually seem to appreciate being part of the process. I will say, though, we like our doctors. If we had a less trusting relationship, we might feel differently.

 

Best wishes to you in this process. We all truly just want our kids to leave the nest well, aye?

 

ETA Good grief, look at all those typos! That's what I get for typing on a phone and not proof reading. Hope you can translate ok.

[marbel]

Can you write it all up for him and make a pdf of it?  I would make it very readable for a busy health care worker, though.  I would keep it succinct, and I would bold keywords.

 

Previous Injuries (type and date)

Confirmed Diagnoses

Known Drug Allergies

 

You could leave his name, birthdate, and other identifiable info off the document for privacy reasons.  When he takes it in with him to the doctor, they can scribble his name on it and stick it in his file.

 

I have done something similar.

 

One of my kids is complicated.  At one point I wrote up a long narrative of... everything.  It was 3 pages.  Every doctor I have handed it to has thanked me for it.  Not one has said "this is too long and complicated for me to read."   (Maybe they thought it, I don't know.)  I also bolded key words, kept things in chronological order, kept to short paragraphs, and was concise as I could be. 

 

I also kept lists of medications, dated, and made a new one every time it changed - but I kept the old one, so no one had to wonder when something changed. 

 

When he heads off to college or life, I'll give him that, and a document with all known family health history.

[Katy]

There's a health and emergency fact document in iPhone.  We keep the information there.

[Luckymama]

There's a health and emergency fact document in iPhone. We keep the information there.

Where, please?

[Katy]

Here's an article all about it.  You must update to ios 8 to have this.  http://appleinsider.com/articles/14/09/24/how-to-set-up-your-emergency-medical-id-with-ios-8s-new-health-app

[Lolly]

By having them fill our all the forms when they are teenagers every time they go in. After hearing the answers so many times (my complicated one still has to go in a lot for various things), they start remembering them. Also, most of her far past reallly isn't relevant to current situations, so if she doesn't get it right it isn't dire. She has been known to call/text me for additional info if she is unsure about an answer that is critical to something current.

[prairiewindmomma]

ITA that filling out the forms is helpful. I thought ds knew a lot more than he did--he could tell me things orally but struggled with forms.

[Jilly]

Thanks for posting this question. I was just thinking about the same thing the other day. My son is almost 16, and he has a long medical history. I realize that he needs to know all of it not only for filling out forms, but also so he can advocate for himself. I am going to write down his whole history for him so he can read over it from time to time. Hopefully it will all sink in. Also I should probably start having him fill out his own forms when we are at the doctors. This is something I have not done in the past, but I think it would probably be helpful to him if he started now. 

[MyThreeSons]

My 19yos has some medical issues, which have recently escalated into a more serious diagnosis. When he had his first appointment with a cardiologist a few weeks ago, I went with him. Part of his condition includes severe nearsightedness that cannot be corrected enough for him to be able to drive, so I had to be there. But even without that, we knew that I would be able to answer family history questions that he couldn't. As he completed the introductory paperwork, he indicated that he was fine with me being given any information about his condition. As the nurse, then medical student, then cardiologist spoke with him, they directed questions to him first, but he frequently deferred to me when they were history-type questions, and it worked out well. He answered questions about what was currently going on with him.

 

In three months, ds will be heading out of state for school. The cardiologist has already said that she will find a doctor up there who she can work with. She will send him a copy of ds's medical records so that he can be informed ahead of time in case something comes up. While I really appreciated this attitude and plan, it brings home the seriousness of the possibilities of what we're dealing with. 

[Lizzie in Ma]

We keep a medical history in Dropbox that our daughter can access on her phone.

We also use CareZone on our phones for an updated medication list and take note of current symptoms.

She also has access to her patient portal at our primary's office, also accessible from her phone.