When my son was diagnosed with Crohn’s disease at the age of ten, I felt like my whole world was spiraling out of control. I had so many questions I wanted to ask his doctors, and yet my mind would not let me form a single one. I wondered what his life would be like while coping with this disease, what his future held for him, how the disease would affect his day to day life, and what kinds of treatments he would need. I was not even sure I knew what Crohn’s disease was. After letting his diagnosis sink in for a few days, I quickly went to work figuring out the best way to cope with his chronic illness. I learned that my first step in helping my son live with Crohn’s disease was to put together a medical notebook. This may seem like a mundane task to some, but for children who have chronic illnesses or diseases, this simple task can provide them the best care possible.
What is a Medical Notebook?
No matter what chronic disease or illness your child has, you can be certain that your child will see many more doctors in his or her lifetime than healthy children. Because of the many different doctors involved in your child's care, as well as the possibility of emergency room visits and hospitalizations, it is important to have a medical notebook. A medical notebook or medical journal is a compilation of all vital information concerning your child's condition, history, and care. This notebook should be brought to every doctor visit, emergency room visit and hospitalization, as well as whenever you travel. I use a large, three-ring binder divided into different sections for my son's medical notebook.
What Goes into a Medical Notebook?
Depending on your child's condition, your medical notebook may look different than the medical journal I keep for my son. You can easily adjust a medical notebook to suit your child's exact needs. I will share what I have done for my son, and based on this information, you may make necessary adjustments to ensure that all vital information for your child's condition is included.
The first section of any medical journal should be an introduction. This is where I have included important information, such as my son's diagnosis, the date he was diagnosed, and the name of the doctor who made the diagnosis. Because my son was diagnosed with Crohn's disease, I also included notes about where his disease was located. Since Crohn's disease can affect various areas of the intestines, I felt it was important for doctors to know exactly where my son's disease was affecting him. This section is also a good place to keep the names, numbers, and addresses of all the doctors who provide care for your child.
Section two includes notes about every doctor's visit my son has. Since weight loss is a concern for children with Crohn's disease, I began keeping track of my son's weight and height at every check-up. I would note whether or not his weight or height increased or decreased. I also added notes about any changes the doctor suggested to his care. In this section, you may also want to create a chart to keep track of any medications your child takes. I include the date my son started a medication, the date the medication was stopped (if at all), the dosage and how frequently he took the medication, as well as any possible reactions or side effects to the medication. Having an updated medication list will be extremely important if you have to take your child to the emergency room or if your child begins seeing a new doctor.
In the next section, I created another chart for any procedures, tests, or surgeries my son had. Children with chronic illnesses often require extensive tests and procedures as part of their regular care. Having a section of a medical notebook dedicated to keeping track of these procedures is a good idea. I note the date of the procedure, where the procedure was done, the name of the procedure, and the outcome. I also include any reports from the doctor on the procedure. This section has often come in handy when I needed to take my son to the emergency room for his condition. I was able to provide the ER doctor with the latest information on his condition based on these extensive tests, and the ER doctors knew better how to care for my son based on these reports. The more information you are able to provide doctors about your child's condition, the better off your child will be.
The fourth section includes a chart to keep track of any hospitalizations or emergency room visits my son has had. I note the date, the location, the discharge date, and any special instructions from the doctor. I also add any discharge papers to this section.
In the fifth section, I keep track of any dietary restrictions my son has because of his disease. I included any notes from his nutritionist here, including charts of restricted foods and acceptable foods for his disease. Depending on your child's illness or disease, you may want to keep a food log as well. Because Crohn's disease is affected by the foods a person eats, I started keeping a food log of what my son eats and how he feels on a daily basis. This information has been vital when meeting with his doctors. In this section, I also added some of my son's favorite recipes.
The sixth and final section in my son's medical notebook is a miscellaneous section. All medical journals should have a miscellaneous section where any extra information is stored. In this section, I have travel tips, correspondence from my son's school pertaining to his disease, articles on Crohn's disease and coping with chronic diseases in children, as well as drug information on the medications my son is taking.
Conclusion
Coping with a child with a chronic disease is not easy. Understanding their medical needs can seem overwhelming at times. The first step in learning how to cope with having a child with serious medical issues is to organize all information that is vital to their care. Keeping a medical notebook will not only benefit your child by providing all necessary information about your child's condition to medical staff, but it will also be therapeutic for you. Creating my son's medical notebook was exactly what I needed to do to organize what I knew about the disease and what I could do to help my child. As a parent of a child with a chronic disease, I cannot say what the days ahead will look like, but I can tell you that the peace of mind you will feel from having a medical notebook for your child is very reassuring.
Michelle Cote - Michelle Cote is an English teacher who enjoys sharing her love of writing with her students. As a contributing writer on Suite 101, she ...
