Keeping Track of Symptoms

I think it is important to keep a symptoms journal whether you are a parent caring for a child with reflux or an adult. On a day to day basis, it is hard to remember all of the symptoms and treatments. I always have a small notebook in the kitchen (next to the medicine) where I can write down a few things: date, symptoms, treatments and unusual problems. When I go to the doctor, it is very useful to refer to the journal to jog my very poor memory for details! At a doctor’s appointment, I write down the diagnosis, treatment, height, weight and other comments. I love data and I think doctors appreciate the data too!

It might be a very simple system for collecting information. Most days, there would be just a few quick notes. For example: 6/6/07 Woke up 4 times-crying. Medication A: 2 times, burping after lunch. If my child is ill and she is taking more medications or the medication schedule has changed, I will keep the open journal on the counter and write down each dose as I go. For example: 9am: fever medication, medication A, antibiotic. 1pm: fever medication, 6pm: fever medication, medication A, antibiotic, medication B. I can also use the journal to track food and fluid intake and sleep patterns.

Sometimes there is no rhyme or rhythm to eating or sleeping, but often a clear pattern emerges. When my daughter was a toddler, she had an “eating window” and consumed most of her calories between 11am and 5pm. Unfortunately, lunch was just a sandwich and dinner was at 6pm on most days. I changed my schedule so she had a hot meal at 11am and 4pm. She still joined us for dinner but she often just nibbled. Serving her high calorie, nutritious meals on a schedule that accommodated her sensitive stomach really boosted her intake.

When I go to the doctor, I always bring the journal. A few of my doctors were really surprised when I add up all of the information and presented a short summary: "Well, in the last month, she woke up 17 out of 30 nights crying. She woke up between 3 and 7 times each night. She has been drinking 22 ounces of formula per day but in the last 9 days, she only took 16 ounces. One day she only drank 11 ounces." The journal also helps me remember to report other important information. For example, “Since our last appointment, Dr. S, Pediatric Allergist saw her and did skin testing. She is allergic to eggs, peanuts and milk. She also had a ear infection. At her well check up, she weighted 22 pounds.”

I think it is important to write down notes, especially if the doctor has specific treatments or medication recommendations. Then I can read back what the doctor has told me to summarize my notes and clarify the treatment. For example: “So I just want to make sure I have this straight. I will stop medication A and begin giving xx milligrams of medication B three times a day for two weeks. I need to call you at 2 weeks and give you an update. The scheduling office will call me this week to give me a date and time for the test.”

I sometimes look at the scribble on the prescription pad and wonder what on earth the pharmacist will give us. In the end, they do a good job and we get what the doctor has prescribed. There have been reports in the media of a few unfortunate miscommunications resulting in the wrong medication being prescribed or the wrong dose written on the bottle. For that reason, I like to compare the notes from the doctor when I get a new prescription to make sure it all matches up.

I have quite a collection of journals now. They are mementos of my daughter’s struggles with reflux and they remind me of all we have been through. She is older now and I barely leave a scribble in my journal.