Organizing a medical binder
One thing I have wanted to do for a very long time is create a medical binder for my son's medical care. I feel like any special needs parent can relate to the mountains of paperwork, medical documents, pamphlets, etc. that you receive from all the appointments visited. Being the clean freak I am I knew I needed to come up with a way to store all the papers in a nice organized manner. I have heard of other people making binders to keep the mess of papers straight so I though I would do one too. But where to begin? I looked on Pinterest for some ideas. I asked around in one of the many special needs mom Facebook groups I am apart of, it was there someone recommended Kangaroo Kids to me.
Kangaroo Kids is a non profit organization that created a medical binder to help families of children with special needs. It was created by 3 kids looking to support their aunt after their cousin (still in utero) was diagnosed with Down syndrome. They realized how much of a need there was for an all inclusive medical binder and began to offer it to other families. At this point there is such an interest in the Kangaroo Kids pouch they are not accepting requests at this time.
Side note: being a non-profit there are plenty of ways to help Kangaroo Kids continue their mission of helping families. If you would like to help click HERE.
This was a project that took me a while and I decided to document the process to hopefully help someone else who was looking to do the same. I am also a firm believer in people learn by different mediums. In addition to making a blog post, I also recorded the process so anyone that would have an easier time following along with a video could do so.
Before I dive in to the process of putting together a binder I just want to point out the information going into a binder like this is very sensitive medical information. You don't want to leave your medical binder anywhere someone you don't know could look in it or take it. Protect this information.
When putting together my binder I did start with the Kangaroo kids pouch. This was a very good outline to what I created. Like I always say everyone's situation is completely different, so no binder will truly be the same. Even with an all inclusive binder like the pouch I still had to make adjustments. It will also take a "breaking in" period to figure out if your binder is set up the way you want it.
To begin you want to gather your supplies:
plastic page protectors
label maker (optional)
copier paper to print (or write) table of contents, logs, tables, etc.
I started the process by getting organized. I took all of my medical documentation and organized it by specialty, which is the way I knew I was going to put it in the binder. It took up pretty much my entire dining room table. I also wrote what specialty it was on a post it note so I could easily find what I was looking for.
Then it was time to make the table of contents and label the divider tabs accordingly. Because I did have the Kangaroo Kids pouch this step was already somewhat completed for me. This is also one of the places I did some customization. I used my label maker to make labels for the tabs so I could read the wording instead of corresponding numbers.
In the first section of DAILY LIVING +
I had the topics (and corresponding tabs):
About Me & Emergency Info
Basic Care Information
Sleep & Overnight Care
Insurance Call Log
About Me & Emergency Info: The About Me page is exactly what it says. It is here you can create a page with name, birthday, things that scare the child, how to calm your scared child, parents names, parents cell phone numbers. The emergency information is a quick guide to your child's information in an emergency situation. The emergency information sheet should include insurance information, allergies and what medications they are currently taking. This could also include a section for the diagnosis your child has for anyone taking care of your child in an emergency that isn't familiar with their medical history. Tables showing care team information and physicians' emergency contact information should also be in this section so their information can be seen at a quick glance. There will be a more detailed section for physicians and therapists in a later section.
Appointment Calendar: Here I have a blank print out of a calander that I can fill in with the month and corresponding appointments.
Feeding Log: Specific to my son's case. He attends feeding therapy and we keep a close eye on what he eats. It is here I put his feeding logs to show to his feeding therapist and GI.
Therapy Log: Here I have a table listing:
DATE | HOME OR OFFICE VISIT | PROVIDER'S NAME | THERAPY TYPE | NOTES FROM VISIT
I can keep track of what was covered in therapies and what I can work on with him at home.
Basic Care Information: This is another section I added. This is a place where I put those papers they give you at the doctor that you don't really know what to do with but you know they are something you should keep. I have a flyer on CPR, choking, Tylenol dosing, and informations on viruses.
Sleep& Overnight care: Another fairly self explanatory section. This is a good place to put any overnight care instructions for someone to look at when caring for your child. Here you can also put a sleep log if that is something your track.
Other Resources: A pretty miscellaneous section anything can go here. It is here that I have put the information for our early intervention and our state assistance info.
Insurance Call log: Very beneficial if fighting with insurance is a common activity, which we all know it can be. On the table for insurance call log there is:
DATE | CONTACT PERSON & EXT. | REASON FOR CALL | WHAT HAPPENED | WHAT'S NEXT |
Questions: Write down any questions you may have for the doctor when you're at home. If you keep all your questions in the same place you will be able to read them off to the doctor to get answered.
Notes: Put any kind of notes you take in this section. Either things the physician said, or something you want to mention to the physician.
The next section is the Historical Information here is where you will put the bulk of your medical papers
The topics and corresponding tabs here are:
Medical History & Diagnosis
Procedures and Surgeries
Labs and Vaccine Records
Medical History: Here I have a table column topics:
DIAGNOSIS DATE | DIAGNOSING PHYSICIAN | HOW WAS DIAGNOSIS DETERMINED | TEST RESULTS/ ADDITIONAL INFO
Procedures and Surgeries: The table I have in this section is labeled:
DATE | PROCEDURE | PRE-SURGERY MEDICATION | TIME TO STOP FEEDING PRE-SURGERY | ARRIVAL TIME & CHECK IN LOCATION | NOTES
It is here you can also put post op instructions or any informational papers about the specific procedure for your records.
Allergies: It is very important to have a list of allergies somewhere easily assessable for anyone taking care of your child.
The table in this section reads:
FOOD/ MEDICATION | REACTIONS | TREATMENT
The table I had provided in my binder also has a column for the date. I look at this section as more of an informative section rather than a log so I would not need the date. If you are looking to keep track of when your child has an allergy the date is definitely an important topic to have.
Medication: This is a section I customized the table that was provided for me.
The sections on my table:
RX DATE | MEDICATION NAME | DOSE REASON FOR PRESCRIPTION | SIDE EFFECTS | D/C DATE
*d/c means discontinue
Medical Equipment: This section is a good place to put any information, pamphlets, brochures, instructions, etc. for the medical and therapy equipment your child has. It is here I have the information for my son's stander and firefly therapy system. I also put any information from his orthotics specialist here.
The table in this section has the topics:
TYPE OF EQUIP. | MANUFACTURE OF EQUIP | SERIAL NUMBER | CONTACT PERSON | PHONE NUMBERS: CUSTOMER SERVICE & REORDER | ITEM NUMBER FOR SUPPLIES
Labs & Vaccine Records: I have the lab table first with the topics:
DATE | TEST | RESULTS
If you have a copy of the lab report I would also recommend putting it behind the log, so you can see the actual lab report.
The vaccination records table follows:
DATE | VACCINE | REACTION
I also have the vaccine information sheets behind the log
Sickness log: It is always a good idea to keep track of your child's illnesses to show to doctors or for personal reference. That can be easily done when logging it.
The table topics are:
START DATE | SYMPTOMS & DIAGNOSIS | DR. APPT. DATE | MEDICATION PRESCRIBED | WELL DATE | NOTES
Physician Information: I have subcategories in this section that I have labeled by specialty. At the beginning of each specialty subcategory is a physician information sheet. the information sheet should have all the information on it anyone would need to get in contact with them and get any issue sorted out, including insurance coordinators, after- hours numbers, and office numbers. Try to think of all the numbers you would need.
Therapist Information: Much like the physician information, I have created subcategories for each therapist we see. The therapist should also have an information sheet.
Milestones: Being a special needs parent it is so important to keep track of every mile (or inch) stone your child reaches. Celebrate even the littlest things! These kids are fighters and should be acknowledged for it!
Other helpful things to have in the binder:
Business card holder: I have a business card sheet protector at the front of my binder. This give me, and anyone else looking at this binder, easy access to the providers contact number
Medical Abbreviation cheat sheet: I have a background working in health care and I know a lot of the medical abbreviations commonly used, but I know not everyone who is looking at this binder (including my husband) knows them. So I have created a cheat sheet of common abbreviations that are fitting to what our medical needs are. I put my cheat sheet behind the business card sheet at the very front of the binder. If you are not familiar with medical abbreviations, or anyone reading the binder isn't, I recommend you do the same and create a medical abbreviation cheat sheet. I used the master list made by the American Speech Language Association that can be found HERE. There are 7 pages of double column abbreviations so I recommend selecting the ones that fit in with your child's medical needs.
It does take some time "breaking in" your new medical binder. After taking it to appointments and living with it for a bit you will start to notice things you don't need and things you need to add. Even between filming the video and writing this post (which was only a matter of days) I have made some changes to what I needed and didn't need. So if you read the post AND watch the video you might notice some differences.
If you print out logs to put in your binder- label the last blank log to remind you to scan or print more, so you don't run out. I used a post it.
If you use plastic sheet protecters and divider tabs, make sure the tabs are wide enough to pass the plastic sheets. Mine aren't and they annoy me, because I cant see the label. I will be changing them soon.
When putting documents in order by date, I prefer to use reverse chronological order, so the newer documents are closer to the front.
Use a large binder, you don't realize how much stuff you have.
I know some people learn better by listening or watching, so I created a video to try to make sure everyone can get the most out of this information. This video is long, but it goes through step by step how to create an organized binder.
Documents: Here are some sample documents to what I used for my binder. The Medication list is a very similar format to all the tables I have mentioned throughout this post. They were all made in Microsoft Word. If you do not know how to create a table on Word, instructions can be found HERE, thanks to a blog post on groovypost by Ben Stockton.