How to Keep a Food Journal
Keeping a food and/or symptom journal is key when you're trying to unravel the mystery that is FPIES. It will be your most powerful ally when you are first trying to get a diagnosis for your child, and a valuable tool in tracking down trigger foods that are causing symptoms. Since FPIES is usually a clinical diagnosis (which means there is no test and the doctor bases the diagnosis on prior symptoms), having a detailed food and symptom journal goes a long way toward supporting your case that your child has something other than the flu. During our first appointment with Matthew's allergist I handed over a printed copy of my calendar, which marked each day foods were ingested as well as vomiting episodes and bouts of diarrhea. She looked it over for five minutes, looked up at us, and said (without any prompting) "This looks like FPIES." I didn't have to convince her, because Matthew's history was right in front of her in black and white, and it spoke for itself. Here's what I handed the allergist that day:
This is early on, when I wrote everything on Matthew's "life" calendar. That's why you also see him waving "hi" for the first time, scooting around, and blowing raspberries. You can clearly see that he ate rice cereal four times, then took a week off (my husband was in Taiwan, and "feeding" a six month old just wasn't at the top of my to-do list). Then on both the 11th and 19th he ate rice cereal again and started throwing up, with repetitive diarrhea on the following day each time. After that, you can see that Matthew started peas the week of the 24th, and then had a reaction with the same vomiting and diarrhea pattern that rice cereal had caused earlier in the month. That was it...this calendar was all I needed to show for him to be diagnosed by specialist who was knowledgeable about FPIES. She recognized the pattern, because it was right there in front of her.
OK, so now you see how powerful a journal can be. Some parents keep a notebook with all of the foods and symptoms in it, some write it down on a paper calendar, and there are even food journal apps out there for your smartphone or tablet. Some keep a poop journal with photos instead of just describing it (I'm SO doing that if our next kid has FPIES). No matter how you do it, keep some type of food and symptom journal. Whatever type of journal fits best with your lifestyle, that's the way to go. Since I keep all of our calendars in Google Calendar, using it to keep food journals and symptom logs just seemed like the right answer for us. I've always kept a calendar for both of my kids using Google Calendar so that I can look back and see when their first tooth came in, when they took their first steps, or when they took their first bite of food. Once we knew we were dealing with FPIES, I decided it would be best to keep a symptom calendar separate from Matthew's "life" calendar. He doesn't need to look back at this someday and see diarrhea listed next to milestones like crawling and his first word. So I changed it up and added a food calendar for Matthew, a food calendar for myself (because we were breastfeeding), a poop calendar (for noting odd smells, mucus, etc.), and a symptom calendar where I could note diarrhea, vomiting, etc.
I won't lie to you...I was sick of journals when everything was at it's peak. I was keeping track of: Matthew's foods, Matthew's poop, Matthew's symptoms, my foods, and the "pumped on date" for his bottle. Every. Single. Day. It was enough to make me want to run away screaming. To just have an irresponsible day, one single day, that didn't require me to keep track of every single detail of our lives. I'd even go on strike for a day, pretending that everything was normal and carefree...then the next day I'd come to my senses and scramble to get everything down before I forgot. It was hard, and it all fell on my shoulders because I'm the primary care giver. Nick would have relieved me of this burden if he could, but he wasn't home for each meal, each diaper, each symptom. But it did get better....with time.
At least Google calendar made it really easy. You can color code calendars and layer them on top of each other. You can turn calendars on and off. You can share calendars, so my husband could see what was going on with Matthew by looking at his own calendar. You can look at your calendar for just a day, for a week, or for the month (which you see above). Take the calendar above...I really have ten calendars in Google, but I turned all of them off except Matthew's and printed what you see above for our allergist appointment. That's the other awesome thing, I can print the calendar out for his doctors. His allergist literally has a record of every food eaten and symptom observed for Matthew over an entire year. For each appointment I would just print a copy of what had happened since the last time he had seen the allergist, and she kept them in his file.
I can't say enough great things about Google Calendar, it works for me and has saved me so many times. The ability to layer calendars has helped me unravel so many FPIES mysteries. We were dealing with what seemed like random vomiting episodes for a month, and I couldn't figure it out. He was vomiting on days when he had only eaten safe foods, when I had only eaten things that were known to be safe...what in the world was going on? Then Matthew vomited to fast food through my milk (he had not eaten solids all day)...it was the first time he'd ever vomited to my milk. So as I added it to the calendar I looked back at the other vomiting episodes. I turned on only his reaction calendar, my food calendar, and our travel calendar....and everything was suddenly clear. All of the vomiting was because of my milk. Each vomiting episode was preceded by me eating fast food while travelling, pumping the tainted milk, and giving it to him in a bottle the next day. Without being able to layer our travel calendar on top of his reaction calendar I never would have made the connection. After that I also kept a log for his bottles, noting the date that the milk was actually pumped, and the time it was ingested. Also, when I looked back, his broccoli fail possibly wasn't a fail, because I had eaten fast food that same day...four hours before his vomiting started and two hours before he nursed. Based on this we did a home challenge to broccoli and it was actually a pass! I just don't think that I would have been able to connect the dots without the ability to filter out all extraneous data from the calendar. Here's what my full calendar looked like in Google for that month:
OK, so now you see how powerful a journal can be. Some parents keep a notebook with all of the foods and symptoms in it, some write it down on a paper calendar, and there are even food journal apps out there for your smartphone or tablet. Some keep a poop journal with photos instead of just describing it (I'm SO doing that if our next kid has FPIES). No matter how you do it, keep some type of food and symptom journal. Whatever type of journal fits best with your lifestyle, that's the way to go. Since I keep all of our calendars in Google Calendar, using it to keep food journals and symptom logs just seemed like the right answer for us. I've always kept a calendar for both of my kids using Google Calendar so that I can look back and see when their first tooth came in, when they took their first steps, or when they took their first bite of food. Once we knew we were dealing with FPIES, I decided it would be best to keep a symptom calendar separate from Matthew's "life" calendar. He doesn't need to look back at this someday and see diarrhea listed next to milestones like crawling and his first word. So I changed it up and added a food calendar for Matthew, a food calendar for myself (because we were breastfeeding), a poop calendar (for noting odd smells, mucus, etc.), and a symptom calendar where I could note diarrhea, vomiting, etc.
I won't lie to you...I was sick of journals when everything was at it's peak. I was keeping track of: Matthew's foods, Matthew's poop, Matthew's symptoms, my foods, and the "pumped on date" for his bottle. Every. Single. Day. It was enough to make me want to run away screaming. To just have an irresponsible day, one single day, that didn't require me to keep track of every single detail of our lives. I'd even go on strike for a day, pretending that everything was normal and carefree...then the next day I'd come to my senses and scramble to get everything down before I forgot. It was hard, and it all fell on my shoulders because I'm the primary care giver. Nick would have relieved me of this burden if he could, but he wasn't home for each meal, each diaper, each symptom. But it did get better....with time.
At least Google calendar made it really easy. You can color code calendars and layer them on top of each other. You can turn calendars on and off. You can share calendars, so my husband could see what was going on with Matthew by looking at his own calendar. You can look at your calendar for just a day, for a week, or for the month (which you see above). Take the calendar above...I really have ten calendars in Google, but I turned all of them off except Matthew's and printed what you see above for our allergist appointment. That's the other awesome thing, I can print the calendar out for his doctors. His allergist literally has a record of every food eaten and symptom observed for Matthew over an entire year. For each appointment I would just print a copy of what had happened since the last time he had seen the allergist, and she kept them in his file.
I can't say enough great things about Google Calendar, it works for me and has saved me so many times. The ability to layer calendars has helped me unravel so many FPIES mysteries. We were dealing with what seemed like random vomiting episodes for a month, and I couldn't figure it out. He was vomiting on days when he had only eaten safe foods, when I had only eaten things that were known to be safe...what in the world was going on? Then Matthew vomited to fast food through my milk (he had not eaten solids all day)...it was the first time he'd ever vomited to my milk. So as I added it to the calendar I looked back at the other vomiting episodes. I turned on only his reaction calendar, my food calendar, and our travel calendar....and everything was suddenly clear. All of the vomiting was because of my milk. Each vomiting episode was preceded by me eating fast food while travelling, pumping the tainted milk, and giving it to him in a bottle the next day. Without being able to layer our travel calendar on top of his reaction calendar I never would have made the connection. After that I also kept a log for his bottles, noting the date that the milk was actually pumped, and the time it was ingested. Also, when I looked back, his broccoli fail possibly wasn't a fail, because I had eaten fast food that same day...four hours before his vomiting started and two hours before he nursed. Based on this we did a home challenge to broccoli and it was actually a pass! I just don't think that I would have been able to connect the dots without the ability to filter out all extraneous data from the calendar. Here's what my full calendar looked like in Google for that month:
And now compare that to a filtered view, with only information pertinent to Matthew's FPIES visible:
The ability to turn parts of the calendar off makes it so much easier to look for trends while comparing your different journals. If you have more than four events for a day, Google will show the top three events, and then have a "+2 more" under the events for that day. I clicked on the the "+3 more" for the 11th to show you what an expanded calendar looks like. You can also put notes inside events, which is why you can't see the foods I was eating listed in the calendar view. I would create an event every day named "A's Food Log" and then type everything I ate during the day in the notes for that event. Eventually I started keeping more detailed information on Matthew's reactions, but dropped my food log (because we stopped eating out), and no longer kept up with poop descriptions:
As time passed and we became more comfortable with FPIES, our journaling dropped off. I no longer keep track of which foods Matthew eats on a daily basis...only noting the start of trials, breaks, passes, and fails on Matthew's calendar. I'm sure it will be the same with you. As your child adds more foods to their safe list and the FPIES mentality becomes second nature, your journaling will become much easier, and then almost nonexistent. FPIES will move into the background instead of taking center stage, and living with FPIES will just seem like your version of normal. You'll be too busy keeping up with your child to give much thought to FPIES, and that's the way it's supposed to be!