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Dispatches From the Food Allergy Jungle

Hello. I know it's been a while since I've written. But it can be tough to get messages out from the Back of Food Allergy Beyond. The message traffic seems to only go one direction with food allergies. We feel very alone and isolated out here. But, I've been writing down our thoughts and experiences in a diary over the last few months, and will share some of those now with you.

From Day 14

Read today (after the fact) about another March food allergy death and saw a response from a noted allergist, someone I really respect. Her message was "why is it so hard to understand that FOOD ALLERGY KILLS?"

It almost broke me. I wondered again what we're doing out here, on the fringes, feeding our child these foods. We're off on this new tributary and there's just no support or shared experience on this particular river.

Does every allergy in every child really need to be treated the same? Where's the advice and support for outgrowing an allergy? For experimental treatments? Where is my village now? My tribe?

Day 26

We've learned the name of the river we're on by now: the Main Stream. It's been a little bumpy in places, but really we've been surprised at how smooth the sailing has been for the most part. We've been eating all sorts of strange, exotic foods. Plus, I'm cooking a lot now with ingredients that are really alien. There's this thin, white liquid that baby cows out here apparently eat. The indigenous people also whip it until it forms a solid. They put it in everything! However, we have only had it baked in the oven so far, and there seem to be new dangers in preparing this food in other ways.

There's another food that tastes a little strange at first, but is so ubiquitous that we've been happy to embrace it: soy. Our son has now eaten this soy (which can be found in the strangest places!) in various foods, including as a soy sauce glaze on things and even frozen Chinese treats from a trading post out here called "Trader Joe's." We have not tried the solid form of the food yet, not because we're afraid but because we all just agree it's too gross.

Day 33

As I mentioned, we don't get much mail out here on the Main Stream. But a newspaper article did reach us out here, simply because it must have caused a ton of ripples back where you all are: Parents Should Relax a Bit About Kids' Food Allergies.

I have to admit that I probably read this a little differently than most of you did, having learned about Toughing It Out here in the jungle. This idea of giving a child a little bit of a food to build tolerance would have been unthinkable to me before this trip. But now that I'm out here, dealing with treatments that feel like witch doctory, I'm no longer sure of where the right path is.

Day 50

We saw our allergist today! Our allergist has not been willing to tramp all the way out here and she's especially skeptical about the "natural treatments" we've been trying the last year, but she is willing to meet us half-way.

When I explained about the new foods we had been experiencing and my doubts about whether my son really needed to continue to avoid milk, she shook her head and pointed again to The Numbers. "But he's successfully eating so much and The Numbers have been all but meaningless in the past!" I exclaimed. She simply shook her head and pointed again at The Numbers. "Perhaps we'll reconsider in a year if The Numbers have fallen," she said.

She was excited to hear about our experiences with the soy substance, but she was unwilling to attribute it in any way to the natural treatment. We are not sure about anything at this point. Was she right and our son just reached some magical age/turning point, despite having had a hospital-trip reaction to soy just three years ago? Or did all those funny-smelling pills change something fundamental? All we can do is continue down the river and see where it leads.

Day 62

My son told me today he's no longer willing to wander off this path.

The topic came up because I've heard there are restaurants out here! Hundreds of them! We literally just need to go over the emotional hill to get to them. But my son is really nervous about the trip.

I can't say that I blame him. After all, he's the one who will be sick and suffer the consequences if it doesn't work out. But it just breaks my heart to be this close and yet know that he's not willing to go a few more steps. At the same time...I see the snakes.

Oh well. We all knew this journey would be difficult, and need to be taken in stages. We'll continue to explore the area we're already in. Perhaps when he's a little more accustomed to things, he'll be willing to take that next step. There will always be snakes...but we continue to remind him that he does carry powerful medication. But, of course, the story that lingers is the one about the snake-bitten child where the medicine didn't help.

Day 72

We came to the final fork in the road today and my son was forced to choose a direction. (The natives out here call the fork College Decision Day.) He had three options: two that would take him farther away from us and one that we could all see paralleled the current path. He went with the closer option. (The natives out here call it the Community College Path.)

The tribesmen were all very supportive and told him that they knew that path led to many other intersections down the way, and that he could stay on it for a year and then transfer to a different path with no difficulties at all. But his dad and I were a little sad. We wondered if he picked that road because of the difficulties we've encountered up until now.

The natives tell us we need to trust in the process and that all paths are good paths. I wish I could pour this awful fear out of my heart. I wish I could stop having expectations about this jungle and just live the life we've been given. I know it would be easier if there were others...but there do not seem to be. Our old friends think that what we're doing is crazy and dangerous; our new native friends do not understand our fears and hesitations.

I'll continue to write as much as I can. I know there are no guarantees the messages will reach you. But you're all I have on this journey: the few who understood why we left: the hope of finding a different, better place for our son to live.

I don't know if our path will turn out to be the right one, but we're too far down it to come back now.

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