I spent the nights right after Bronsen's diagnosis in tears. The reason I cried the most was because age 3 seemed so far away and how was I going to deal with "this" for the next 3 years. We didn't know if he would ever outgrow it, I knew it wouldn't be before age 3 and that it most likely would be after. How could we send our son to school, when food could really harm him? Any thoughts at all about how we would manage his FPIES or thoughts about him not being ok with any foods would send me into a tearful breakdown. It usually happened at night, away from everyone, when I held him in his room after one of his feedings. Since he was so young when he was diagnosed we really didn't know if he would ever have "safe" foods. I thought my kid would be on breastmilk for a really long time and there was a chance that formula would not be safe. Of course laying him down was always hard, since his big reaction left me traumatized. I had fed him a supplement of formula and layed him down, only to hear gurgling from the next room a few minutes later. He could have choked, and maybe he did before I came in. Maybe I heard him just in time.
A lot has happened since he reacted at 10 weeks. Lots of testings, a food challenge in the hospital which required an admission, an IV and an 8 hour stay. Bronsen has had a few IgE prick tests, for regular food allergies. The initial test just after he was a year old, showed a very positive result for milk. We've had him tested 2 times since then, for a total of 3 IgE prick tests. Just a few months ago during a prick test we noticed that his milk positive was still positive but now the size of a small spider bite, rather than a large more allergic reaction to a mosquito bite which is what his original IgE prick test looked like. It's sad but that small positive was reassuring for us. I had high hopes for the next IgE test.
We took Bronsen to the allergist in June, for his regular checkup, which we do every 6 months. No issues, nothing new, but we had actively added soy to the point where Bronsen can have as much soy as he wants, we don't measure or keep track anymore. He drinks soy milk and eats edamame until he feels like stopping. The Doctor did an IgE test and it was negative for milk. I was hopeful that it would be but I surely was expecting the worst. I just didn't want to get my hopes up. We could not do a milk challenge unless the IgE prick test was negative, a blood test was negative and a patch test (for FPIES) was negative. But any test that was negative was a step in the right direction. Because before if Bronsen was to ingest any form of dairy or milk his throat could have swelled closed, and his FPIES would have caused vomiting. This would have been a horrible combination. So with the prick test being negative I knew that I could worry less about the swelling part, and focus more on whether or not he still had FPIES to mik.
Thankfully, all 3 tests were negative, but the blood test did show a slight positive to one form of dairy/milk that they tested for, but it only showed up as a .48 on a scale that goes up to 100. So after all this, our Doctor will call us to set up an in hospital food challenge for some sort of dairy product. We aren't sure if it will be milk, or if it will be something with milk baked in it. We are waiting for the Doctor to call us with a date for the challenge, it's not easy to schedule since Bronsen needs to have a room and a bed at our local children's hospital. Also, food challenges aren't usually done in the hospital.