Lately it’s move move move, get the house ready to sell, organize logistics for the movers, figure out rental cars, hotels, utilities, get rid of junk. BLAH BLAH BLAH. Things that should take an hour end up taking a day with two hangers on. But life has also been going on around all that too, and we’ve received one piece of pretty good news that certainly helps put minor logistical annoyances in perspective.
Remember B’s food issues? More or less he had a bunch of “symptoms” that doctors told us were normal for toddlers or things that could be treated in isolation. (“Oh, he’s covered in eczema? Here slather him in this cream to make it disappear, don’t worry about what’s causing it!!”) He also got every virus and illness in existence, including a lymph node infection that they treated with two different antibiotics he was allergic to. We did a few tests here and there but mostly the answer was jus,t “Eh, kids get sick a lot!” They all said he was fine while I insisted he was not until he basically stopped growing for a year and I really pushed it, then all of a sudden it was panic station 10. They put him on reflux medication as a bit of a stab in the dark. His pediatrician and allergist were suggesting things like Eosiniphilic Esophigitis (EoE) and/or FPIES. They said the only way to diagnose him was to ‘scope him’. For those lucky enough to be unfamiliar with that terminology it means general anesthesia and running a camera and a sharp thing to biopsy through both ends of his GI tract. I didn’t know how to politely say, “Umm no way in hell are we doing that to my 2/3 year old,” so instead I made it my goal to convince them he didn’t need it.
With the two suspected conditions there is this triad of a treatment team- allergist, pediatrician, and gastroenterologist. In a lot of ways no one can decide who’s on first but if anyone is, it’s the GI. She would be the one doing the scoping so ultimately she would decide if it was needed. Of course that meant she was by far the hardest one to get in to see. (Side note: when I’m at a birthday party surrounded by allergenic pizza and cupcakes it seems like my kids are the only ones with issues and then when I’m trying to book appointments with specialists it really seems like it’s a total epidemic.) We eventually had an appointment set up with the, very highly regarded and oh so hard to see, gastroenterologist so I had a timeline to somehow “fix” B before we went in there and she started getting all scopey.
By then we knew that dairy and soy were big problems so those were out. I started a detailed food diary for B and noted every morsel he ingested and every possible symptom exhibited. Talk about a mess of data to figure out. Around that time we also figured out that F (probably) had FPIES and I read more about that. The next two most likely FPIES trigger foods were rice and oat so I watched those carefully. Turns out they were also not good for B, his body was just so used to dealing with them that his symptoms were more chronic and under the radar. We just sort of went from there and kept up the journal, slowly pulling one food at a time until almost all of B’s “symptoms that weren’t symptoms” disappeared. A fun fact I learned along the way is if you pull a problem food and then reintroduce it, the reaction becomes a lot more acute. That was an unpleasant discovery, but a good way to reinforce what we were seeing was real and the changes were probably helping.
That whole stretch kind of sucked. We were constantly throwing food out, going to a million grocery stores, searching for alternatives that didn’t exist, and wondering what the hell we could all eat. It was also interesting to try to explain to a 2/3 year old why the things we used to try everything to get him to eat were now off limits. Those were some fun meltdowns.
I also joined all of these online groups for FPIES, EoE, Eosiniphilic Support, Fructose Malabsorption, etc. It was incredibly helpful, I learned tons, and it helped me put the final missing pieces together. It’s one thing to notice issues every time your kid eats rice, but another to notice issues with lemonade, apple juice, garlic, and onion and have no idea that they actually all have something in common- they are all very high fructose!
Anyhoo, the details are boring, but we finally had B doing well. Almost all of his “symptoms/not symptoms” were all of a sudden gone and he was eating like a horse. Best of all he was gaining serious weight for the first time in two years and was actually growing out of clothes. Those were fun meltdowns too, because after you’ve worn the same clothes for years it’s apparently hard to let go.
Right, getting to the point, we finally had our much awaited GI appointment last week. I explained everything to her, his entire history and how we got where we were and she listened and took notes (amazing!) Even better she had actually already read his entire file and knew his story. She asked me why we had him tested for bleeding disorders, Leukemia, Celiac, etc etc- all things I had forgotten about/blocked out- and it made me remember how long we’ve wondered what was going on and what a long road it’s been. (B was out of the room with my mom because he gets upset about all this stuff so we could speak freely.)
Eventually the GI doc concluded, just based on history and discussions, that he likely had FPIES and/or an Eosiniphilic Disorder. She said the only way to know was to do a scope….BUT then the most amazing thing happened. She said, “I just don’t see any reason to put him through that right now since he is doing so well.” She looked again at his file and all of her notes and said to me, “He was sick for so long and now he’s healthy! You made him better! Why would we want to make him sick again just to get an official diagnosis?” (We would have to feed him all of his problem foods again to induce symptoms so that the scope would actually turn up any useful information.) I thought I must be imagining things so I just sort of stared at her. Then I cried, kind of an embarrassing amount. In the end it felt more like a therapy appointment for me. All that time worrying and freaking out and feeling like I hadn’t helped him, I finally felt like maybe he was on the right track and maybe we had figured out how to keep him healthy.
In essence, whatever he has, the treatment is the same- don’t eat the foods that cause problems. He is now off the medicine and as long as he keeps to his diet he feels good (seriously, it’s a dramatic difference in his behavior and activity level!) He is eczema free, healthy, and really has no GI symptoms to speak of.
Certainly eating dairy-free, soy-free, grain-free, and low fructose is a challenge when you compare it to being able to eat everything. But when you compare it to changing your diet every week and trying to adjust and freaking out about what tests are going to be shoved down your throat (haha, get it!?), it’s a breeze. Granted we still don’t really know what’s going on and things could change down the road, but for the moment I’m feeling pretty good about where we are and how far we’ve come.
**If you are still reading, take a breather….
A few people have asked me if, now that we are moving to a bigger city with more jobs, I am planning on going back to work. That probably deserves its own post but I never seem to get around to blogging now so I will just address it briefly– No and I feel incredibly lucky to be able to make that choice. There are a lot of reasons why and this post has dragged on enough already. Basically I think there are a few jobs out there I could do well and I think there are a good number of other people who could also do them well, but those jobs will still be there later and there are good people to fill them now. I’m not convinced anyone could do this job better. We’ve finally come a long way with B but we are just getting started with F. While I may have had no clue what I was doing with B for a long time, I do feel like now I’m pretty uniquely qualified to help him. (And obviously I’m also uniquely interested in helping him, because hello, obsessive mother.) Plus, do you have any idea how effing long it takes to make your own pizza and cupcake from scratch for every birthday party so your kid doesn’t feel left out? No one has time for that, especially with a full-time job.