Medical Information “Housekeeping”

This post is more for the “newbies”  on the Special Needs journey.  Welcome and I hope I can help your journey run smoother. 

Owen would have been around 10 weeks old when we were first told there were issues.  At that stage we were in a state of shock (and fear), yet denial, yet knowing deep inside. That's confusing isn't it?  It was a strange mix of emotions and one I can not adequately explain. Our world collapsed and left us in a haze. We concentrated on putting one step after another, no matter how little the steps were.  As a result, I did not give much thought to record keeping.  I am pleased to say I have picked up a few tricks since then.

When it comes to record keeping and preparing for an appointment it helps to keep in mind specialists generally want to know:

• Any diagnoses you have
• Issues that result from the diagnosis (and sometimes there is no diagnosis just the list of issues)
• If it is not your first visit, any health or other issues that have surfaced since last time they saw you
• What medication your child is on, any side effects noted, dosage.
• Any medications your child has been on, any issues.
• Any allergies
• What other specialists you have seen
• How and what your child is eating and drinking
• How often they are going to the toilet (and they want ALL the gory details)
• Weight, height and head circumference.
• Where they are developmentally
• Finally, what you need from them

So here are my tips:

General

Even if you see all your specialists at the same hospital do not assume everything they need is in your child's file or easy for them to access there.  Give them what they need or point them to where it is.  Asks questions, take lists of what you need to discuss.

If in Australia always ask for indefinite referrals from your GP, so you don't have to go back each year for a referral.

Set up a calendar:

It can be paper or electronic but it needs to be everywhere you are.  I use my Gmail calendar.  I can access it from my phone and PC at home.  I note appointments and reminders in there. I generally set reminders for 24 hour prior to the appointment and check the week ahead on a Sunday.

Set-up a display folder to carry information:

Get yourself a display folder, with sleeves you can slide appointment letters , doctors letters, blood test results and the like in.  Take it with you to appointments.   If you have a scanner, scan the letters first (so you have an online copy) before you put them in your display folder.  Keep copies of the letters behind them in the folder (for handing out  in need).   Don’t worry if you don’t have a printer that copies, the receptionist at the specialist you are visiting will take a copy if they interested in the information.  Set-up a system, so you know where to find what you are looking for.  It depends on what is easier for you, it could be date order or like me, blood tests together, eye reports together,  letters together, other reports together. Finally if you have any contact cards, attach them to the front inside of the folder along with your child’s hospital reference number  and your contact details in case you lose the folder.

Ask every specialist you see to cc any letters to you.  This means you get a copy of their letter back to the referring doctor.  This is helpful as these letters can have confirmation of diagnosis for funding eligibility, form filling or simply information other doctors may need.

If tests are completed, ask if you can get a copy of any reports, blood tests results for your folder.

Storage and Preparation:

Organise a spot on your PC to file any on-line or scanned reports and letters.  So it is easy for you to find.  I actually file mine in an e-mail folder so I can easily e-mail them to someone.

Keep a diary of the major things that happen, so you have a date record.  I do this via an app on my  IPad (Baby Connect).  It is not a Special Needs app but I like it as I can create my own categories under sickness, medication, moods etc.  I can even input height, weight, milestones and diary notes.  I can filter by the info I want,  generate an e-mail myself with the raw data and input it into excel if I wanted to (BTW I don’t).  I just got the basic app which was around $5.  I don’t use everything on it but you can even log nappy output in need.  I’m sure there are many different apps that do this sort of thing, so search around.

Create a list of all the doctors, therapists, schools and organisations involved in your child’s care.  Take a print out of that with you when you see a new DR or go to enrol in school etc.  All of these places generally want permission discuss your child with other teams involved in their care or just want to know who else is involved. Rather than fill it out manually I just write refer attached and cross out anyone that does not apply.

Create a dot point info page (you can combine it with the above if you like), that you can take to new doctors, therapists or to the ER.  Mainly so you don’t forget anything but sometimes it is helpful just to hand it over. 

• Name, date of birth and hospital reference number
• Current height and weight (date completed)
• Include current medications and dosage (include vitamins, probitoics)
• Allergies and what happens if exposed
• Diagnosis, list of issues, including things that are monitored, that might become an issue
• How they go under a General Aesthetic

 I know all of this looks very daunting, but once you have it set up it is second nature and quick to maintain.  You will be able to put your hand on what you need, when you need it.