Making a medical binder.

What is that one thing (not alive of course) that you would grab if your house was on fire? Mine used to be photo albums...now it is this:

The medical binder.

Not nearly as much fun as photos, but...if we are every truly in an emergency situation, this is the thing I NEED to have. We keep it in the kitchen, by the back door and use it daily.

My oldest son has a rare genetic disease called CSID, or congenital sucrose-isomaltase deffiency. In English this means that due to a genetic quirk, his body does not produce sufficient enzymes to digest his food-specifically anything containing sucrose (table sugar) or starch.

Now before you go thinking that he's just missing out on a few cupcakes, let me tell you that nearly all fruits and most veggies contain some about of sucrose, starch or both. Without his medication, he can only digest about 1.5g of sucrose per meal and 4g of sucrose per day. To put that in perspective, there are 1.7g of sucrose per 100g (about half) of a pear, 3.3g sucrose in 100g of apple, and nearly 12g of sucrose per 100g of banana. This ain't just skipping deserts people. This is MATH at every meal, every day, no matter what and that's just sucrose.

We haven't even begun to talk about the biochemistry of sugars (sucrose is no good, but sucralose is ok?) or how his little body deals with starch digestion (a more complicated process with a different set of rules and limitations) or what medications he can safely take (sucrose or starch are in most OTC medications) or what complications may accompany his disorder (there is the potential for many) or what is safe for him to eat without is medication, or who to contact in an emergency, or blah blah blah, yadda yadda yadda, so on and so forth. Let's just say there is a lot of information that needs to be conveyed to a lot of different people, often.

The medical binder helps me organize it all, and distribute just what is necessary to each person involved in his care, from grandparents, to doctors and dieticians. In this post I am going to talk about how to organize and prioritize medical information about your child into a binder so you can keep it all straight. This outline is geared to CSID, but the general idea could be adapted to any medical condition.

First, gather your resources, clear your schedule, and get cozy with your computer and printer-this is going to take a minute.

You will need all of your notes from doctors visits, dietician consults, lab work, etc. You will also want to pull up any reliable websites with information about your child's condition. Power up the computer, pour a glass of wine and you are ready to go. (Don't make this an ordeal. This is to HELP you take care of your child and RELAX because all that information in your head is finally out of your head and accessible to others. Take your time creating your binder, and really, have a festive beverage and listen to some calming music, and for the love of all that is holy, do it in your comfiest of pants.)

Second, start organizing your resources and information according to who needs to know what.

The binder is going to be your communication tool when you meet with various people in your child's life. You need to think about information on a need to know basis. The doctors will need technical information like lab results, the dietician needs a food journal and the babysitter just needs to know what to feed him and who to call in an emergency. You may want to start by making piles or files for each section, then choosing one or two sections to work on at a time. Don't overwhelm yourself trying to do it all at once.

• The first page is for EVERYONE. It should have:
• your child's name,
• your child's date of birth,
• parent's names and contact information,
• contact information for the primary contact team (including direct phone numbers and email when possible), and
• contact information for specialists or support groups that may be helpful.
• A sentence or two about your child, what they like, what they are interested in, where they are in school, and a photo would be a great addition to this page-it will make your child more than a condition and give doctors and nurses a way to connect with your child and make them feel more comfortable.
• This should be limited to ONE PAGE like a resume.
•  The next section is for CAREGIVERS. So essentially everyone again, but written in a way that your typical babysitter can understand. It should have:
• A definition of your child's condition,
• What that means for your caregiver stated very simply. What do they need to do to provide excellent care for your child? Do they need to give medicine to your child? Do they need to pay special attention to what your child does or does not eat? Who should they contact with questions?
• What they need to know/do in an emergency?
• Any other information about other conditions your child may have.
• Again, so as not to be overwhelming, limit this to ONE OR TWO PAGES.
• The next section is for PHYSICIANS. This is where you will file any information that your peditrician, specialists, dentists and occasionally nurses will need. It should include:
• Lab results
• An in depth condition overview
• Any specific concerns you have about your child's on going health and development
• Any research you have compiled about your child's condition
• Any notes from other doctors that you need to remember to communicate to other members of your child's medical care team.
• Lined notebook paper for taking notes and jotting down questions at appointments.
• The next section is for DIET, and will have some special sub sections.
• Safe foods list: This is a list of safe foods for your child to eat that do not require any special measuring or medication. This should be limited to ONE PAGE so it can be posted on the fridge at daycare, grandma's house, friend's houses etc.
• A Sample safe food menu: A two day plan to feed your child balanced meals for breakfast, lunch and dinner, (including amounts and recipes as needed) that someone could easily follow if you were separated from your child. (ie: overnight at grandma's, parent on a business trip, parent in the hospital etc.) Try to keep this to ONE PAGE so it can be posted on a fridge, and use foods that do not require medication.
• A diet summary: This is for you, your child's care takers, the dietician, specialists, and pediatrician. It should act as a quick reference for meal planning and be sorted by type of food-Meat, Dairy, Beverages, Fruit, Veg, etc. Be sure to include quantities or food composition calculations as needed. You may also want to include a summary of what makes a typical balanced meal or snack.
• Specialy diagnostic diet information. If you child is on a diagnostic diet, such as the induction diet for CSID, you may want to summarize the instructions here.
• The next section is the FOOD LOG or diary. Just some lined notebook paper for recording daily food intake and symptoms.
• The next sections will be for reference, for CSID this would include print outs of food composition charts from csidinfo.com or csidcares.com
• The final section is for FAMILY. Because CSID is genetic, there is some information that would may want to collect and share with family members, and information about feeding infants that may be helpful if you have more children. When I was in the hospital having #2, I brought a one page print out that summarized CSID and why breast feeding was important, and what formulas would be acceptable for supplementation if necessary.

Third, assemble your binder.

Print out tabs, print out your summaries, and hole punch your way into sainthood.

Forth, distribute the information and BACK IT UP.

I lied a bit. I probably would just get out of the house with the boys and the dog, binder be damned. Because I have it backed up. I keep a copy on google docs, but there is also a copy at the pediatrician's office and at GI, I email a copy to the grandmothers each time it is revised. The dietician has a copy of the diet section and food log, friends keep copies of the safe food lists, sitters have copies of the caregiver information. The point of the binder is to collect and distribute information, so many different people have parts of my binder on record all over town, even the dentist has requested a copy, I don't really need to worry about grabbing it in a fire...BUT if we are on the way to the ER or to see a new doctor, you bet it is coming with us.

I find it really helpful to drop off a print out of appropriate sections two or three days prior to an appointment with a new doctor. In my experience, because CSID is so rare, the nursing staff and doctors like the chance to review the information prior to the appointment, and they usually have questions for ME when we get there. (Remember, they are likely in the medical field because they find this stuff fascinating-let them geek out a little, tell them it is ok to pass it around or leave a copy in the lounge area or meeting space for general consumption, it can only help your child.)

The binder also helps set the tone for the appointment, it lets them know that I am informed, involved, and ready to be an equal, active partner in my child's medical care team. This might be hard, but we are all in it together.

-Jen

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