When my son was young, he had medical issues that affected his health and development. Doctors began noticing it by six months of age, and ordered a few tests. By a year old, we were all concerned at his lack of strength and failure to develop key motor skills. The doctors began ordering tests and therapy in earnest, trying to find a diagnosis to explain his problems. I was at a doctor’s office, or hospital, or medical facility nearly every week, discussing his symptoms, explaining what we had tried, what we had learned, what had failed to produce results.
For a while, I was able to keep all the information stored in my head, but as the number of tests grew and terminology got harder and longer, I realized I needed a better way to keep track of my son’s medical records. I began taking a notebook with me to his medical visits and writing down everything the doctor said. I asked questions until I was satisfied that I had recorded all the pertinent information. Having all the terms and information written down allowed me to look up the information at home and do some of my own research so that I could become more informed about my son’s health. After a few intense research sessions, I could talk to the doctors on their level and make better decisions on my son’s behalf rather than leaving all the important choices up to a stranger.
When I left the office, I made sure to get a copy of the receipt for the visit, which had other pertinent information such as the date of the visit, medical codes, the doctor’s name, and contact information for the clinic. I placed the receipt along with my notes in a three-ring binder and began keeping a log. I was now able to refer back to my notes and records to determine if a doctor might be proposing a test that had already been done, or if tests results had changed over time. With so many doctors and so many different tests, this record book became invaluable. For many years, I had to refer back to it for dates and procedures when medical history was required on a form or when he had to see a new medical professional.
For parents of special needs children, keeping records like these is critical. There is simply too much information to keep track of. So if you are a parent of a special needs child and you are just starting out on this medical journey, I encourage you to start a record book right away. You will be thankful to have the information catalogued over time.
Even if your child is not considered a special needs child, keeping these kinds of records can be very useful. Over the course of their pre-adult lives, you will be asked many times what year they had chickenpox, when they had their tonsils out, dates of broken bones and wisdom teeth removal, or if they’d ever had this vaccine or that treatment. Answering those questions accurately is so much easier if you have a written record of your child’s medical treatments.
Eventually a doctor discovered a problem with one of my son’s heart valves. Surgery corrected the issue, and his health slowly improved, though he was always several years behind other children his age in his development. He is nearly an adult now, and soon will be on his own. When he ventures out into the world and no longer relies on me for his medical records and information, I will pass his medical binder on to him and let him be the caretaker of that information. Some of it will never be useful again, but some records he will need to refer to again and again throughout his life. The important thing is that he will have full knowledge of his medical history and will be able to make better decisions about his health.