Swallowing, Scope and Surrender

Its been a little bit since I posted last. For one, I wanted to leave up our fundraiser post for a little bit to raise awareness and to direct people that found us on here from our flyers. And two, I haven't really known what to write. With our posts, I like to try and motivate, to try and encourage creativity, to try and find hope in the midst of all of the frustration.

Well, today we are all about the frustration around here. B is ok. But something is up and we just can't figure it out. This started a few months ago when her food aversions started kicking up again. Then we had a month with random vomiting episodes when she was eating--- never seemed to be any causal link between a specific food and the vomiting--- it just simply WAS. After the fourth episode of stomach emptying vomit, I called the GI and he suggested a swallow study. We went in the day after Mother's day and had it done; they used flavored barium. For one, the study itself took forever-- they kept tilting the table side to side and back and forth because the barium wasn't moving quickly enough through her system, they said. My poor girl was not having any of this and had to be held down by two staff members and N and I. I ended up with a fat lip and B had tons of bruises. :( Despite the slowness of the barium's movement, we got the report that everything looked normal! Great! Well, less than 24 hours after the barium, the mucousy, black diapers began, accompanied by lots of reflux flares and a horrid diaper rash. For the first few days I thought, this must be normal-- her body must be trying to move everything out, right? Well, by that Wednesday, she had successfully passed the barium so I thought, ok, it will be ending. WRONG. The diarrhea continued and even worsened in different intervals and her rash caused skin breakdown and bleeding once we were a week out from the test. She had welts on her diaper area that looked like horsefly bites. Awful, awful. For the first week after the procedure, she was refusing almost all food and most drink. After the first week, she started drinking more, though still wasn't even nursing very much. When we hit the two week mark she started to improve. Apparently, there are all sorts of things that can be present in flavored barium (won't be giving her THAT again!) and in my mind, she reacted to something in it. Both the radiology and pediatrician's offices said that they had never heard of B's response as being anything like a normal response. At this point, we were seeing a lot of food refusal still.

So we got through that and B's diapers still aren't back to her "norm" but if there is one thing that we know about FPIES, reactions often long overstay their welcome. We had been holding off on food trials until her diapers improved so I decided to try a few spices/herbs since her eating was still horrible. I settled on cinnamon and made the most delicious cinnamon graham crackers (IMHO!) The first day, she ate a cracker by scraping her teeth across it until she ate it via tiny tiny crumbs. This behavior concerned my but at least she was EATING, even if it was in this manner. She told:"Those are your favorite crackers that you ever had" ("you" meaning herself of course, lovely toddlerisms). I was so stoked. But at bathtime, I took off her shirt and the skin between her shoulder blades was bright red and covered with mosquito bite sized bumps, kind of in clusters. After bath, I put on hydrocortisone (Rx) and gave her oral benadryl. By the AM, it was completely gone-- just a bit of scabbing from where she broke the skin itching. I gave her another cinnamon cracker that AM, within minutes she was itching her back again and at just over an hour, her eye started swelling. It wasn't bad but it was noticeable from across the room. Contacted the allergist and he confirmed that cinnamon was likely a fail.

And so, as always, we moved on. We moved forward. But then I reintroduced fish to B after not giving it to her for a couple of weeks (she just kept refusing it so I thought she needed a break so it could become "new" again). She acted excited and acted like she liked the taste, just as she did when we first trialled it. But then she was chewing and chewing, and not swallowing. She was taking tiny bites and I had cooked the fish until it was literally falling apart, it was so soft. But she ended up gagging and needing to spit it out after about 10 minutes of attempts at swallowing. And then she tried to eat  some more and the same thing happened. At that point, she started refusing the fish again. That was when I thought, "We have a problem." She wanted to eat the fish but something was stopping her from swallowing.

So in the AM, I called and left a message for the GI. When the nurse called back, I told her about the fish and that B was doing the same thing with baked goods (cookies, muffins and cakes) and we had initially assumed it was behavioral but after seeing her want to eat and become frustrated when she couldn't swallow, we got concerned. After a bit, we heard back from the GI-- they want to scope her. An upper and a partial lower (he said it will be very simple so that is good). And now we wait-- it sounded like it will be scheduled soon and at least N has some scheduled time off from work coming up next week--- hopefully it will all coincide.

I am on the fence-- I want them to find something but I don't. I want there to be answers but I want there to be an end in sight. There are so many thoughts going around in my head and I am so torn as to what is best for B, what could have been done better by myself in the early days, what could have changed the outcome. I know this is a routine procedure, I know it was only a matter of time before she had to have one done, I know FPIES is a mean old beast that I routinely would like to kick in the head. . . . but I wish I knew why all of this is going on. Why the IgE symptoms--- the last three food fails have been accompanied by hives and/or swelling as well as FPIES symptoms, ranging from mild to bordering on severe. Why have the two most recent tests-- the SPT and the barium study--- produced reactions but caused only negative test results? The most overwhelming thought, though, is this--- I want this to be done for her. I want B to have a break. I want her to go to playgroups, do toddler stuff, all without the worry following us around that there will be a reaction, like we are constantly trying to outsmart and outrun this entity that we know as FPIES. I am done running, I am done dragging her along. FPIES--- I am B's mama and I am telling you "NO."