Changing our Food Trial Protocol

So a few of weeks ago, we decided to change our food trial protocol, partly based on this image: instructions given by an FPIES specialist (Dr. Bajowala in North Aurora, Illinois) and posted online by a couple of lovely ladies (Taryn M.B. and Charity D.) in my Facebook FPIES support group. Another lovely (Michelle L.) chimed in, saying that her doctor, Dr. Anna Nowak from Mt. Sinai in New York had given them basically the same protocol.

This is what I had been looking for! I felt like I had won the jackpot - someone actually posted a trial protocol given by an FPIES specialist, on the medical advisory board of the FPIES Foundation and the Queen of FPIES herself, Dr. Nowak!

Immediately, I was struck by the differences with our protocol. 

• It was much LESS aggressive, meaning it was a straight 14 day trial; no rushing! (If you recall we were doing a 4-3-4, even trialing a new food during the break!) 
• There was no break.
• The amounts given were smaller, for longer. (I was starting out at 1/2 a tsp and doubling daily) 
• The food must be given every day once considered safe. (For how long? A few weeks? Months? The logistics of eating an increasing number of safe foods every day boggled the mind. (Addendum: and an unintended consequence of this might be weaning, which I don't wish to do yet!)

At Michelle L.'s first appointment (which was 4 hours by the way!) with Dr. Nowak, they did skin testing for the top 8 allergens and 5 items with a high pass rate. They were given 3 months to trial the 5 foods, a probiotic and an oil. The doctor emails them and they were given a nutritionist to speak to over the phone.

The 5 foods they were to trial are cauliflower, broccoli, white russet potato, quinoa, corn and olive oil. These foods were not chosen with regard for nutrition, but rather because (with the exception of corn) they all had high pass rates and would open up some textural options to allow the baby to move past thick purees. To date, I had been using a data set put together by other FPIES parents that listed foods by pass rate as well as the raw data which can be sorted to find other kids who have passed/failed the same foods as your child - and use it to determine what to trial next. It is super helpful to decide what to trial next.

Furthermore, the instructions from Dr. Nowak were to:

• buy organic.
• push through some of the symptoms until you get a fail of vomiting or mucous/blood in the stool.
• keep the food in the diet everyday, skipping a maximum of 2 days if necessary.
• Once the first 5 foods had been passed, she then suggested apple, plums, coconut, chicken and beef. Needless to say, the chicken and beef scare me and I'm not sure why those were recommended; my understanding is that poultry in particular is higher risk for FPIES reactions.

My allergist had been pushing me to lose the breaks in our trials. I-FPIES suggests a 7 day trial with no breaks, and now that I came across this information from members of the FPIES Foundation medical advisory board, I became convinced to switch our trial protocol. I could do 7 days for low risk foods and if no symptoms showed up, and I could extend to 10 or 14 days if we needed to push through any symptoms.

We have now finished trialing pork. There were some body rashes and diaper rash (yeast), just as with beef (which we eventually failed after a break), but we pushed through and days 5,6 and 7 were symptom-free! I'm calling it a success and have moved on to re-introducing banana (which we had without issue before our FPIES diagnosis).