Keeping it together

When your child is diagnosis with a disability, disease, defect, or is born prematurely you are often overloaded with information and a lot of it you need to remember. There is also a lot of things you would THINK other doctors and specialists know, but they don't, and in times of emergencies some important details may slip your mind. For instance if they have a mix of major and minor issues you may rattle off them all, or so you think, and miss something that had your head been clearer you would have. You may also cover everything and the person writing it down misses something important. Your child may have been on numerous medications over the years and when asked "what all has he taken?" miss some, and believe me when the list is longer than your arm it's going to happen.

What can you do to make things easier for yourself and any doctors and specialists you deal with? You create your child's medical bible!

Things you will need:

1. A good binder, one with pockets on the inside and if you wish a clear pouch on the outside.

2. Dividers: how many depends on how many sections you feel you need. you can even make your own by getting a heavy stock paper and the stick on tabs.

3. A pen, Sharpie marker (or any fine tipped permanent marker), and at least one highlighter.

4, A package of the stickers that say "HELLO" or "ALERT" in red across the top and have writing space below. (red is the comment colour used to draw attention to something important so they must be red, if you can't find any get the white sticker and with a red marker make a BOLD outline around it)

5. A hole punch

6. A computer, printer, and some quiet time! =) if you can get it!

OPTIONAL:

6. Page protectors: though these seem great and I do use a few they do block the dividers!

7. Large envelope

8. Any medical records/information you currently have.



First off take those "hello" stickers, you want one for allergies and one for medications, write that on the top of each and highlight it. Now write what meds they are on, what the doses are, and when they get them, you can use as many as you need. On the second one write down their allergies and reactions. Now take them and stick them to the BOTTOM of the front cover of your binder.

Now that you have moved to the binder turn it and take your sharpie and write your child's full name on the spine and even their birthday if you wish. Do the same at the TOP of the front cover but not too large, now this next part you can either do on your computer, print it off, and stick it in that CLEAR front pocket or you can write it directly onto the cover (which is what I did). List ALL their diagnoses, one under each other, from most important to least. Yes I know they are all important but think of the ones that take priority over another or ones that tie into each other, put the one that may make things more complicated first. For instance my son has asthma but also has chronic inflammation of the lungs with chronic infiltrates and asthma-like symptoms (all this means is it can present like asthma attacks but treating with asthma meds will NOT work) I list his lung disease FIRST that way they need to read it before they move on to asthma. If asthma was listed first they may not read any further due to his presentation and automatically assume standard asthma treatments will do the trick.

Once you have finished that take your dividers and write on the edges the categories listed below, you do not have to use them all and can even add your own, do what fits your circumstances best! Once you are done add them to your binder and you are ready to begin adding things to it, if you chose to get an envelope glue it to the inside of the back cover or stick it in one of the pockets, be warned though that not gluing it means you are more likely to loose it (this will be used to store receipts, cards, or anything else you find important until you can put them away properly, which I advise you to do!)

-Personal Information
-Medical History and Alleries
-Childhood Illnesses and Immunizations
-Medical Team
-Equipment and Supplies
-Care Log (aka appointments & hospital stays)
-Bloodwork and Test Results
-Medications  
-Assessment Reports
-Therapy/Schooling
-Resources/Funding

If your child is old enough have them decorate a few pages to put at the front of the binder (before any dividers) and add a few blank pages or coloring sheets for them to color on later (like while in hospital), glue family photos of good times to stock or construction paper and add them in too. Not only does this personalize the binder but it gives your child something to look at while away from family. It also allows anyone you are dealing with to see what your child and family is like when your child is not ill, they are no longer just a sick child, they are a child who loves the swings or has a blast with his family.

Now the headings are pretty straight forward but I will still go into more details on them.

Personal Information: Include your child's name, age, birthday, insurance numbers and anything else that is important. Also include who their siblings are and who you are, even include a picture beside each name so they can put a face to the name. Add in your contact information, their primary care teams information, emergency contacts and number of relative they may want to call while they are in hospital (put in a signed waiver saying it's ok for you child to call them). That way if you are not there and they want to talk to grandma they, or staff, can call them so they can talk. Also include their likes, dislikes, and a copy of their routine, for example is there a special way they take their medications? is there a blanket or toy they need to have when they fall asleep? is there a special song you sing to calm them down? if so include the lyrics and if possible name a common tune it's sung to.

Medical History and Allergies: Make sure the name of the allergy and type of reaction are in BOLD letters, you can even make them red to highlight them more. Include all their medical history here and if they have a rare or uncommon condition print off information about it but make the first page of it highlight the key aspects of it. For instance my son has a rare form of epilepsy with some unusual seizures so we highlight what seizures he has and in the information we provided we highlight (with the highlighter) the information we said was important so they know where to read if they only want a brief overview.

Childhood illnesses and Immunizations: Include a copy of your child's immunizations, if you don't immunize say so, and if there is a medical reason for it tell them what it is (eg allergy, bad reaction, etc). Also include a list of childhood illnesses they've had, and no I'm not talking every cold/flu, focus on the important ones. For instance my son has suffered from repeated iGAS infections and cellulitis, those need too be know. List things like chicken pox, whooping cough, NEC, RSV, and other illnesses you think are important to know about. Include the date, or approximate date if you can't remember, treatment received, if there was a hospital admission or ER visit etc.

Medical Team: Do a few pages, if needed, do one for doctors/specialists/clinics, nurses, therapists etc when you list each include all the contact information you have for them. You want phone numbers, pager numbers, addresses, which hospital(s) they work out of or program they are part of, and even e-mail addresses if you have them. You can even split it as specialists and community supports, do whatever you feel is best for you but try to include everyone and include clinic days (if they have set ones) and how often you see each of them, if your child has been discharged from their services indicate that but keep them in your file. This way if months or years down the road you need their services again you have the information needed to contact them or have new referrals sent to them.

Equipment and Supplies: Include the name of the equipment and/or supply, any identification number on it, where you got it from, their contact information, and what it is used for. If they are supplies that you order regularly add in how often you reorder or the date you usually do. If you have any warranty papers or manuals you can also add them to this section or a reminder of where you put them.

Care Log: This is where you list ALL your appointments, ER visits, hospital admission, surgeries, procedures etc. include date (and time if you wish), the reason for it, the outcome (meds etc), and when to expect a follow-up. Also include the doctor's name, hospital, and any contact information you may need. You can also take notes from these appointments and put them in as well, this way you can go back on them later and see if you have additional questions you may want to ask (and yes I suggest you take notes during appointments, especially if they are making changes to something or giving you new information or a new diagnosis!). Also keep any medical records you have here (or alternatively under Medical History), separate them by clinic and/or doctor. This is actually where I use the paper protectors in our binder, each page protector has the name of the clinic that the enclosed records are from and they are in alphabetical order, in front of them all is a print out with a table of contents so they know exactly what is in this section. 

Bloodwork and Test Results: Include copies of any and all tests results you have, even if you have to pen them onto a piece of paper. Include labs, x-rays, ultrasounds, etc, even if you don't have the results keep a log as to what was done and when, it can come in very helpful.

Medications: Include two or more sections, one for prescription, over the counter meds, and other things they are given on a regular basis that may interfere with medications they may be prescribed (like vitamins, herbs, etc). With each you want to list what it is that was given, the dose, how often it's given, start and end dates, who prescribed it, and why it was prescribed.

Assessments and Reports: Have they had a feeding study? did the doctor do a developmental assessment? put the reports in here, put anything in here that doesn't all under the next category.

Therapy and Schooling: Keep records of everything, therapy reports, report cards, school/therapist assessments, their education plan (known as an IEP here) and a copy of anything you gave the school about their medical history and treatment protocols. This is an asset! This way if something happens at the school and they say something like "you never told us that" you can look back and see if you did. For instance my son's school was told he is to NEVER have grapefruit or grapefruit juice as it causes his seizure med to absorb improperly and can quickly cause an overdose, one day I went to the school and found out a parent brought in some of those pouches of gummy snacks (which contained grapefruit juice), now at 6yrs old my son can't read the ingredients so it was up to his EA to either read them or not allow him to have any. Unfortunately his EA didn't read the ingredients and allowed him to have some, BIG NO-NO, when I fumed about this I was told they didn't know so I went back over the medical plan I did with the school at the beginning of the year and lo and behold it was there! After that I went in and reviewed his medical plan with them and we made a HUGE sign saying he can't have grapefruit and even had his doctor write a letter saying the consumption can lead to a drug overdose, coma, and death. They will never make that mistake again.

Resources and Funding: When you come across resources, whether you need them or not right now, add a reminder to your binder and include as much detail as possible about the program like what it's for, the criteria for it, and contact information. Keep receipts and letters you have received from programs you have used and keep track of what you received from them and when. Some programs are a one time thing and you may forget you've used them years down the road and this will help prevent you from going through the sometimes lengthy application processes when you wont qualify. Others have a time frame, one request per year, every other year, etc and this will allow you to look back and see when it was you last used them. This portion will also help you help other families, you won't be wracking you brain trying to think of a program's name and contact information that they may find useful that no one knows about...and believe me there are a lot of programs that seem to be hidden from us!


Finally, if you wish, use the front pocket or add a page protector to the very back of the binder so you can add stickers and other small things to keep you and your kids busy.  Don't forget to store your pen, marker, and highlighter in one of the pockets as well. Not only will you need them later on but your kids can also use them to draw on the paper you put in the front of your binder! (you can also store a few crayons, pencil crayons, or colored markers in there too for them)


I hope you find this as helpful as we do, our binder goes EVERYWHERE, we take it to every appointment, ER visit, and hand it to the ambulance attendants when we have to call the ambulance, especially if for some reason we can't ride along.


***TIP: At the end of each clinic/appointment ask for a copy of the report for that day, most clinics will gladly send you a copy once the chart has been completed.