For the Record

How to organize the medical history of a child with special needs.

Thirty-four years ago, I had a son born with spina bifida that involved multiple anomalies. We experienced many challenges and saw many medical professionals from many different medical facilities. From each doctor’s visit to the next, we endured ongoing changes regarding the condition of my son’s health. Throughout it all, I kept a journal to preserve information and make it immediately available for reference for the sake of my son’s personal health and care.

As my son went from infancy to adulthood, the journal helped me to collect, track and share past and current medical information. By collaborating with his providers while having each piece of knowledge on record and at the ready, I was able to foster a continuum of health for my child.

At the onset of my son’s initial diagnosis, I found that a doctor may not know everything. A doctor may not always have all the answers to address the many questions that arise. It might require further studies until an answer can be given. In many cases, it is overwhelming for a family learning to manage a special needs issue or a medical condition, along with trying to cope with and understand the various situations that happen daily because of the issue. During the entire process, many records start accumulating, such as treatments, procedures, reports, X-rays, tests and bills, that need to be filed in a safe place for easy reference. It is imperative that you keep copies of every report or test result that might be required throughout the lifetime of your child.

As a young mother, I had to develop something to ensure my son was getting the best care possible. I found it necessary to keep a medical history summary sheet and journal to take to the doctor visits, a three-ring binder to contain all the medical reports and information I was receiving, and a caregivers’ manual and video on how to take care of my child. Of course, all this occurred over time as I found what was helping me and everyone else who was involved in my son’s care.

Begin maintaining a personal health history for your child. Divide it into categories for easy reference. Categories could include alerts, doctor appointments, hospitalizations, medications, psychological evaluations, surgical procedures, an Individual Education Program Plan (IEP) and other areas of importance specific to your child’s upbringing. Take the journal to every doctor appointment. It now becomes your primary source for recalling facts and procedures at the many medical offices your child frequents.

It is important that you keep accurate medical notes of everything that transpires involving your child’s health and care. You will likely discover that every physician, medical professional and medical facility keeps extensive notes, which you will need a copy of for your records. Maintaining the medical summaries in a concise, organized and user-friendly journal helps all medical personnel give your child the best of care.

You may see many different healthcare providers, family practitioners, allergists, specialists, therapists and surgeons. All of these providers will have a separate medical file on your child. And it is probable that they may not be aware of all of the advice and treatments recommended and received. That is why you should be the owner of your child’s complete personal health history. The medical professionals are just the custodians of your child’s medical records. By you overseeing your child’s personal health history, it will save you money and possibly your child’s life.

Patience is hard to acquire. But it’s something we learn as we care for a person with special needs. Work on becoming a partner with your child’s medical team and remember to use gentleness in how you approach doctors and other medical personnel, including when it involves human misgivings. This plays a significant role in allowing you to receive answers to questions and the appropriate care and treatment for your child.

As a parent, you are your child’s central advocate. Keep in mind that if something does not feel right, question it and check it out to find the best process for properly treating your child. Medicine is changing rapidly. Hopefully there’s a solution available to meet your child’s needs, if not today then maybe in the near future. Support the process by keeping a thorough record of your child’s medical history. Medical professionals agree that having your child’s data organized, accurate, thorough and accessible expedites the process of your child’s diagnosis and treatment.

How to Organize a Binder with Your Child’s Medical Reports

  • Get a three-ring binder with a zipper to prevent loosing valuable information and make transport simple.
  • Use divider tabs for each of the categories needed, such as doctor reports by specialty (neurosurgery, urology), hospitalizations and academic resources.
  • Three-hole punch each report by date according to category.
  • Place and update a current picture of your child in the binder.
  • State the specialty and not the physician on each divider tab. Throughout your child’s lifetime, the specialty will be the resource, not the current physician seeing your child.