Thursday, December 18, 2014

Creating and using a Care Notebook for your child with medical needs

Shortly after Cade was born, a friend told me about Care Notebooks.  I'd never heard of them, but a program in Oregon gives them for free to any child with special needs, so I signed up to receive one for Cade. 

Two years later, our Care Notebook goes to every appointment.  So handy!!  For me, it's absolutely 100% worth the time and effort to assemble one. 

1.  What is a Care Notebook? 

Our Care Notebook functions as a personal health record and helps parents coordinate the complex records of their child's care, services and providers.  ~The Swindell Center

Being the parent of a child with special health care needs can feel overwhelming at times.  Your child may need care and services, on a regular basis, from many different types of providers.  This Complete Care Notebook was designed to help you keep track of and organize important information about your child's health and healthcare.  ~Family Voices of Rhode Island

2.  Where can you get a Care Notebook?

Oregon residents can get a fully assembled notebook for free from the Swindell Center.

Alternatively, anyone can easily create their own with a few tools and downloadable forms.  Here's how...

3.  Download forms to build your own Care Notebook

Complete Care Notebook - this one is from Family Voices in Rhode Island.  Fantastic Care Notebook, but at over 129 pages it'll make you wonder if it's all necessary.  It's not...over half is a resource guide that may be useful for you but is mostly relevant in Rhode Island.  I printed pages 1-47 and it was perfect. 

Care Notebook & Organizer - this is the one that I received from the Swindell Center and the one I still use.  It's well-laid out and comes in both English and Spanish.

Care Notebook - another good option, this one is from Washington State Dept of Health.  I use some of the pages from this one because I like the way they're laid out. 

4. Take a shopping trip for office supplies

You'll probably need to buy a few things.  Here's my list, add or subtract as you feel the need (links are for reference):

  • 1" binder - Any 1" binder will work, but consider getting a good quality one.  You'll use it a lot. 
  • Divider tabs - I like the ones with pockets, but buy whatever you like best.  When I build Care Notebooks, I usually just buy the 5-tab sets, but they do make 8-tab sets if you think you'll have that many categories.
  • Binder pockets - if your tabs don't have built-in pockets, you'll probably like having a few pockets
  • Business card pockets - Not only are these great for storing business cards from doctors but I've also discovered that these hold medication refill slips from the pharmacy very nicely. 
  • Some sort of Post-It note pad - great for writing down questions prior to an appointment or taking notes during an appointment.  I keep mine in the very front.
5.  Put it all together.

Put things in the binder in a way that makes sense to you.  If a page or section of the Care Notebook isn't relevant, pull it out and save it in a file somewhere.  Someday you might need it.  When Cade was hospitalized for the first time at 10 months, I was glad to still have the Hospitalizations page.  But you can also always print individual pages off of the website where you downloaded originally.

6.  Pull together all of your information to enter into the Notebook

This is where it gets more tedious.  Filling in all of the blanks takes a lot of time, but it's worth it.  Grab a cup of coffee and settle in.
  • Contact info for all doctors, specialists, and therapists.  If they've seen your child and produced a medical record, get their info. 
  • Medication information.  I've started saving the prescription tear-off tabs at the bottom of our prescription receipts from Walgreens.  They have all the info I need and they fit into a business card pocket. 
  • Appointment information.  I keep a record of all appointments, but if you have a TON of appointments, maybe just keep track of the specialists and well-visits.  Inevitably, someone will ask "When was the last time he saw...." and now you'll know. 
  • Lab tests - if you get a lot of lab results, consider putting them in the binder.  My son has an issue that requires almost monthly blood draws, and I refer back to the results so often that I finally made a tab just for them.  If you only have blood draws a couple of times a year, then this may be a step you can skip.
  • Hospitalizations, surgeries, procedures.  Dates, reasons, which doctor did what, etc.
  • Anything else that you would refer to often. 
  • For my Down syndrome mamas, I also recommend printing out a copy of the AAP health care guidelines for kids with Down syndrome.  The checklist is handy and easy to follow.  I usually print pages 4-6. 
7. Start filling it out and take your time.

It doesn't have to be done all at once.  If your child has a lot of procedures, lengthy hospital stays, etc, then it will probably be overwhelming to think about.  But you don't have to do it today, or even this month.  For now, just focus on getting doctor's contact info.  Then do another step.  Whatever you can handle is better than having nothing! 

Don't be afraid to move around sections of the Care Notebook.  Make it usable for YOU.  A lot of pages of the downloaded Care Notebook forms won't be useful to you.  Some will never be useful, don't worry about it!  These notebooks are general for use with all disabilities, so there will be pages for things like cerebral palsy that you'll most likely never need.

Now that I've given you the nuts & bolts, here are some photos of my Care Notebook and what I personally have in it.  Mine has evolved over 20 months of use and is still changing.  It's a work in progress! 


Some recent additions to my Care Notebook


My tabs:
  • Medical - contact info for doctors, medical record numbers, diagnoses
  • Personal - all about Cade...family history, In Case of Emergency, etc
  • Appointments - I note the date of each apt, weight & height, Doctor, reason for visit, and any follow-up the doctor requests or notes about the visit
  • Lab Results - Cade needs almost monthly blood draws so I finally gave the labs their own tab
  • Medications - any prescription meds or supplements, the dose, and who prescribed.  This is super handy for new doctors because they can just photocopy the page.  


AAP Guidelines for Health Care - our pediatrician and I go through the list together at every well-visit.  She has it on her computer, but loves that I have it so handy in the binder.



I take my Care Notebook to every major appointment now.  Well-visits and anything with a specialist.  Today it came in super handy.  We had a new specialist we were supposed to see in February.  Instead, they called this morning and wanted to know if we wanted to come right now and fill a cancellation.  When I arrived, they handed me a 4-page New Patient form.  It wanted the name and phone number of Cade's pediatrician, his heights and weights for as many months as we could fill in since birth, and several other things.  Those aren't things I memorize, but I had my Care Notebook and was easily able to fill everything out on the form.  I had this blog post in mind, so I snapped this pic as I sat in the waiting room:


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