Sunday, September 13, 2015

Dairy Yogurt!

The first thing that led us to FPIES was Myra's dairy issue.  Even only having milk proteins through breast milk, she was such a different baby without it.  I tested it and she was a nightmare after I had just put butter on toast, so I remained dairy free for the remainder of the time I breastfed her.  We have had great luck with some risky FPIES foods (eggs, corn, wheat, barley, peanuts) and she's getting closer to an age where many kids start outgrowing FPIES, so we thought we'd give dairy a try.  Because of how yogurt and other dairy products are made, some kids can have those but not actual milk.  We started with yogurt because it has the highest 'pass rate' among dairy products for FPIES kiddos. Note to other FPIES families: we made an informed decision to do this food challenge at home.  Many kids do challenges in clinics or even hospitals, sometimes hooked up to an IV as a precaution.  This is definitely a judgement call and no one size fits all.  Be sure to factor in your past experiences with reactions and gather any and all information you can about your options before deciding how to go about challenges with your own children.

We started with one baby spoonful on day one.  Two spoonfuls on day two.  We worked up to half a cup by day five and more than that by the end of the first week.  Even though plain Greek yogurt tastes a lot like sour cream, Myra loved it.  She thinks yogurt is so cool.

Then we took a break.  You've all heard me say a lot of FPIES kids don't have a reaction to a food until they have had a break from it.  It would be impossible to continuously feed Myra all of her safe foods, so we build the break right into the trial ensuring we figure that part out straight away.  It was unreal being able to feed Myra a giant bowl of 'regular' yogurt and I was so nervous we would have to take that away from her after the break.  That's when her reaction to avocado happened, after a break from it.

Then she got a cold.  Myra's sleep is awful with a cold even though she's in good spirits all day.  Rather than risk being confused by horrible sleep symptoms, we extended our break.

The first day after the break we started small just in case.  The second and third day we went wild and let her eat as much as she was willing.  She slept great, no barfing, no complaints.  We are shocked and THRILLED that Myra can eat dairy yogurt!  Next we will do cheese, as soon as I get to the store to buy some.  The pass rate for hard cheeses is very similar, so we anticipate that will go well.  After that, straight milk.  If that goes well, we will consider all dairy as safe for her.  

Percentages are pass rates, numbers on the right are kids who passed vs tried the food

This is a HUGE step in figuring out if Myra may have outgrown her FPIES.  We are really hoping to make enough progress to figure that out by Thanksgiving.  What a relief it would be to not have to worry about substitutions, cooking second versions of everything, keeping some separate before adding other ingredients, food spills, etc.  We'll keep you all posted, but for now, this is amazing progress!!!

I didn't even plan the cow shirt, but how fitting.

For more info on our FPIES journey, click the "FPIES" tab at the top of the page.

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