So where I left off. . . . So we had gotten support from the pediatrician, but still weren't really sure WHAT we were dealing with and had a limited number of resources. So I tried finding out about common triggers and apparently missed that sweet potatoes was one of them. We started B on sweet potatoes and I started noticing that her reflux was getting significantly worse, or so I thought. She wasn't sleeping at all during the day (which was normal for her at this point) and was barely sleeping more than a couple hours at night, not consecutively. She also had the hiccups constantly and displayed this really weird sucking behavior-- I had bruises all over my arms from her sucking on them. She also had some really nasty diapers on a regular basis. Now I can look back and say that she was starting to have issues with sweet potatoes, but at the time I thought it was a combination of reflux worsening (no idea why), teething, and her outgrowing our co-sleeping situation. It wasn't until on day 15 of sweet potatoes that she had her full-blown FPIES reaction. Two hours after ingestion she was vomiting violently every five to ten minutes for about 2 hours. She was really funny acting and seemed "glassy," but she would try to at least sip water and nurse a little in between vomiting, so I think that is why she didn't become dehydrated at the time. She had nasty diapers and bad reflux for several days following, but now we knew sweet potatoes were out.
We took her off solids altogether, thinking her system needed to take a time out. She had always been a fabulous nurser and had excellent height and weight and was hitting her developmental milestones, so it wasn't a big deal for us. It took a few weeks to get back to "normal" for her, but as soon as she was, her reflux was all but gone, no more nasty diapers, no more diaper rash, still some sleep issues but we were at least back to her baseline (she has been a horrible sleeper since she turned about three weeks old).
About 6-8 weeks later, we started trying her on bananas (she had done well with them prior to the evil sweet potatoes) and then pears, though she wouldn't touch pears with a ten foot pole. At this point we were still giving her premade baby food. We tried Kix after a suggestion from a friend who has FA kids and that was also a success. We had tried applesauce previously, but it had always given her a nasty diaper rash, so we didn't really offer that very much. After Christmas, we decided to intro peaches, but after three days, she developed some nasty mucousy, acidic, and green diapers as well as reflux symptoms, so we ditched peaches. We then tried blueberries and noticed similar symptoms pretty quickly, but foolishly decided to see if she was "just adjusting" and pushed forward. A note--- when we start a food, my LO only receives one small baby spoonful of the food per day for the first 3-4 days, then we increase to 2 spoonfuls for a few days and so on, until at 3 weeks of a food trial, we have worked our way up to 1-2 oz per day, and only in the AM. So back to the blueberries (blueberry applesauce to be exact). After a week of her symptoms worsening, we pulled that food, and after it was taken away, she continued having the initial symptoms for a full two weeks and developed a nasty diaper rash requiring prescription intervention. It took another week to even begin to clear up.
At this point, we were frustrated. Our then 10 month old was only able to eat bananas, Kix and pears (though she refused to eat the pears in any large volume). It was at this point that I abandoned all premade baby food and began completely making my own. We found that she was a much more pleasant baby and had significantly less problems with the homemade food. For bananas, I cooked them in a skillet until syrupy and then pureed them (she refuses them raw in any form, chunks, puree, frozen, etc). For pears, I peeled, cut, steamed and pureed them and it was then that she started eating them like they were going out of style! Hooray! We stuck with the Kix and then decided to trial arrowroot starch, since I wanted to start baking somethings for her. I tried a biter biscuit recipe first, using Masa and arrowroot for flour and bananas for the egg. The cookies were a huge hit. I had three trials of the recipe before finding a consistency I liked, but it finally worked!!!
So following our arrowroot trial, I got brave. She hadn't had a severe reaction in almost 5 months. The milder reactions gave me pause, but I thought we should try avocado. It was supposed to be a great baby food and it was so nutritious-- high in protein and good fats! Initially, it was like pulling teeth to get her to eat it. By day 10 she was eating 1/4 oz 1x a day. By day 11 we upped it to 1/2 oz and by day 12 we had a nasty reaction. It is significant to note that when starting avocado, she had a couple days of some sketchy diapers, but they went away so we thought she was just adjusting to a new food. The thing we should have paid attention to was the hiccups. From day one she started getting the hiccups an abnormal amount during the day. They increased gradually and became more prolonged. When she had her big reaction, it was about 4.5 to 5 hours after ingestion, and in all, it entailed 15 episodes of vomiting (mostly projectile), two ER visits, one ambulance ride, and her losing consciousness twice. NOT an experience I want to repeat any time soon. This was a little over two weeks ago and we are almost now back up to the same amount of "safe" foods we were eating before (bananas, pears, Kix, and arrowroot and Masa and corn meal in baked goods). Next post-- how we make four foods seem interesting!
Our Triumphs and Tribulations ~ Dealing With FPIES in the Kitchen and Beyond!
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