Monday June 13, 2011

That took longer than I expected. It was a rough week. Busy, yes; but emotionally draining for various reasons. Like Adam always says when I start getting snappy, “Mommy, is it me or Liam who is being frustrating?” … well, this week it is partially Liam.

Monday we slammed back into schedule after a lovely weekend in West Virginia with extended family. Liam saw the orthopedist that afternoon who could find absolutely nothing wrong with his back on inspection. He said if we weren’t dealing with all the food issues, he’d pursue it further but at this point, we’re not going to look for zebras in Texas. Isn’t that a fantastic line?

Thursday morning we headed off to see an allergist for the first time. I. was. dreading. it. After having to hold Liam down and not being successful the last time they did a blood draw, I wasn’t in the mood to deal with any painful doctor experiences at all. Liam cringes when he hears the word doctor and refuses to co-operate with anything, constantly asking, “will dem poke me?” Unfortunately he found out the night before that yes, he would get poked but it would be a little different and in his back instead of his arm and he wouldn’t have to lie on the table. The fear in his eyes shot like daggers. “I hate dem,” he kept saying. He was up at the crack of dawn, fell partially down the steps, and howled. The day began.

Thankfully he settled down on the bench to watch me water the flowers (how AWESOME is this ninety degree weather and WHEN is our pool going to get set up?) and the day improved a little.

And then, there we were. The nurses were exceptional. Nice office. The allergist … the jury is still out. I made notes before I went in, trying to condense two years of history as concisely as I could. I think I still spewed too much at one time and I think he’s one of those men who cannot type notes and listen at the same time because he missed a lot and would come back in and say something then when I’d correct him he’d say, “Oh, I thought you said you were giving him eggs”. Um, no. Not giving. He was convinced that Liam actually had lots of environmental allergies that were actually playing out as food issues now and in a year or two he would be showing all kinds of respiratory issues instead. I could kind of deal with that thought. I mean, it’s no fun, but goodness, it’s not quite as life changing and you can always get shots to help. Which is exactly what he said, “You know, at least we’ll be able to do things to treat it then.” But I didn’t quite believe him. To prove his point, he tested him for things other than food also. There sat Liam with over twenty-six scratches on his back plus a few on his arms because they ran out of room and had to repeat a few. The scratching wasn’t fun for him, but was a far distant cry from the way he thought he was being murdered the last time they dug around for a vein.

We played basketball in the room for twenty minutes waiting for things to show up. And proved two things. One, Liam has few environmental issues. A tiny bit to a few trees and to dogs and that’s pretty much it. Two, reaction to egg and HUGE reaction to peanut BUT no longer to wheat or tomato. That seemed like good news. At the same time, my heart was kind of sinking. WHY does he not show positive and yet react to half a million things?

When the doctor returned he said he thinks Liam has FPIES … the acronym for food protein induced enterocolitis syndrome. How have I never heard of this before? Babies get it and don’t break down proteins well and it causes digestive issues. “Which is good news,” he said and went on to talk about patch testing and an oral in-office challenge for the true egg allergy. My biggest question, “What’s the long term outcome with FPIES?”

“Oh, they out-grow it. In fact, most kids outgrow it by the time they turn three.” And, he went on. “After the patch testing we’ll start re-introducing foods to see what happens….” I started feeling really, really hopeful and we had a happy afternoon meeting my mom for lunch at Chick Fil A and playing at the indoor playground at the mall. That night I started researching FPIES and started crashing. It sounds pretty similar, but not completely. FPIES babies are frequently hospitalized for severe blood-stained diarrhea that causes dehydration. The two most common culprits are rice and oats. Rice has never been a problem for Liam except for rice milk. And while he had multiple blow outs per day, he was never close to being hospitalized. Is that because I caught on quickly enough? Is his case mild? If it’s mild, than why is he reacting to so MANY foods instead of three or four and why does he keep on reacting to new foods instead of healing like FPIES babies do? Why does he have to do everything the complicated way? But strangest of all, WHY does he not get better when he should be healed by now?

Suddenly I felt angry and a little blown off by the doctor. It felt as though he blew off what I was saying about Liam being more symptomatic and handed out pre-conceived ideas of classic cases instead of looking at Liam’s case specifically. Like, there is syndrome X syndrome Y and syndrome Z and I need a box to check and we’ll treat him for that one. When I said he did not tolerate dairy but has done well on goats milk, he said, “People who can’t tolerate dairy can’t tolerate goat milk either.” I wanted to spit back, “Yes, I know that most people can’t but, hello, it has WORKED for us for a year and a half and you can’t argue with results.” I mean, come on. Liam went from under 5th percentile on the growth chart to 25th. And he does not have diarrhea. And until December he was the healthiest kid in our house with zero complaints about anything. Something is working. Plus, I am coming to you, not because I am muddling along with no idea what is going on, but because I have exhausted my mental resources and Liam is getting more symptomatic, not less; so don’t just ignore that and tell me we are going to start re-introducing foods without HEARING that. I am very capable of being wrong, but I am not stupid. I graduated at the top of my nursing class because I am capable of studying and learning and thinking and I HAVE been using every brain cell I possess to scope out hidden causes. Please, please listen to what I am saying and work with me instead of instantly discrediting things I say. But he was out the door already. And I wouldn’t have said half of that if he wasn’t.

I tried to hold things together on Friday because we had a wedding to attend. It wasn’t one of my best days. I sat there staring at a thousand small orbs that put my child at risk of death and held on to him with an epi pen at my feet. He was totally unamused at not being allowed to go play with the other children, but I couldn’t risk the residue. Some day maybe he will understand that a mom’s love is one of the strongest forces in the world, even when it feels mean. We got home and I lost it. Completely. I sat upstairs and cried and cried when I said I was cleaning.

That night when I was crying again David put it into words for me. “You feel alone in this, don’t you?” And that, is the tears in a nutshell. I DO feel alone. Not the alone in, “I’m the only one doing this,” but the alone in, “It feels up to me to figure this out and I don’t know how. It’s just way beyond my capabilities.” We talked some more and he prayed for me since I was completely incapable and finally the hopelessness lifted.

I feel hopeful again. I’m going back. Maybe to prove him wrong? Not really. Mostly to see if I am blinded. Mostly because even though he isn’t the best listener, he is very intelligent and knows enormously more than I do and I like that. And mostly because I am absolutely DESPERATE for help. Maybe he is outgrowing some of the things. Maybe he is reacting to new things. Maybe there are ways to re-train his body. If what he says works, I’ll be embarrassed at my unbelief and hitting the sky with excitement. And if what he says doesn’t work, then we’ll both know and go from there.

As the day wore on, I felt God showing me a picture of his grace. Of the way He gives light in the darkness if I can stay focused beyond myself. I am a control freak. I can cope with issues once I know what they are. I’m not afraid of the fight once it’s identified. Unknown muddles are my downfall. I still struggle with unanswered prayers. I don’t know how to micro-manage Liam’s fussiness and multiple complaints of belly pain / back pain / knee pain. But it will be okay. It really will. Some day we’ll look back on these days and know them as a bad memory while we revel in the joy of knowing. Just like we did with the summer of 2009. And maybe, maybe this will actually all disappear, just like the doctor says it will.

And I really will get to Liam’s favorite foods next.

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• Wednesday June 15, 2011 →