We still haven't been to see the specialist in his actual clinic, there was hope that they would be scheduling something in the month of June but the doctor said it would be most likely be July. After our little mini crash course with him I took it upon myself to find out everything I could to help prepare myself for what lies ahead. A lot of what I have found is terrifying. Some of these poor kids have very few safe foods. These parents monitor every little symptom their child shows and relate it to being FPIES related. Things like stomach cramps, FPIES. Reflux, FPIES. Poor sleep, mood changes, constipation and diarrhea, FPIES. Apparently There are kids with Chronic FPIES reactions (most of the above symptoms) that last longer periods of time from what I can tell, and then there are Acute reactions which is what Ty has.
My poor little brain has so much to learn.
So armed with my new knowledge and my starter list from the doctor we began our food trials. I found a dairy and soy free rice cereal which Ty hated. He hated it so much that I am not really comfortable saying it was a pass, after two days of force feeding it to him I moved on to sweet potatoes. Not only did he love those but they were a definite pass. Things were looking great, he was back to pooping regularly and overall doing great. Next up was squash. The doctor did not specify which kind so I asked the "expert" moms on one of the facebook groups I have joined and it sounds like I will need to trial all different kinds. So far we have tried butternut, and although he has not vomited from it I am hesitant to call it a pass right yet. Some external factors like my left nipple cracking and him ingesting lots of blood have made for some funny stools and make it difficult to know what exactly is happening.
Since those were the only three foods the doctor listed us to start with I decided to go ahead and make the decision of what food we were trying next. I figure we will need to try most things anyways so I picked plums. I wanted something that will hopefully help him to become more regular, I think my next choice will be another fruit for the same reason. So far we are on day three of plums and everything is looking great. They are a little bitter tasting (I chose black) but if I mix it with breast milk he gobbles it right up and is yelling for more. This kid just can not get enough food.
I have a small calendar book that I have now dedicated to tracking child related things like illness and food trials. I probably should have started something like that when Mav was younger, poor kid has been sick so many times it would have been useful when talking to doctors. Anyways I like that I can plan ahead using the monthly calendar and I've created a symbol legend for poops and illness etc. I log the info in more detail on the daily pages, each day being sure to include what it was Ty ate and how much. Part of me wants to just be carefree with all of this and wonders if it is a bit much at times but then I remember feeding Ty will not be carefree for a few years* (hopefully he will outgrow it by age 3 with the majority). When planning the food trials its also helpful to see the calendar when planning since I do not want to risk a hospital trip on a day when I am alone with two kids.
So as of right now our food stats stand as follows:
Safe Foods
- sweet potato
Trigger Foods
- Oats
- Dairy (assumed)
- Soy (assumed)
Uncertains
- Butternut squash
- black plums
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