Tuesday, May 21, 2013

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.

Follow me on Facebook or Twitter  


  1. Thank you so much for continuing to share your journey and blazing this jungle trail.

    I'd only take slight issue with this one generalization: "Our old friends think that what we're doing is crazy and dangerous." Perhaps you'd concede that this might say "Some of . . . "? ;-)

    Where would our world be if it were not for the brave explorers?

    We'll keep reading if you'll keep posting.


  2. Thanks, E! But I would have to say "most of"...because there's a point in the path where I've seemed to lose most everyone.

    For some people, it's the idea of putting one's child through intentional food challenges several times or experimental medication. For some, it's willfully ignoring "may contain peanut" labels. But it does seem like there's a step in the path where most people say "I'm just not going to go there."

    But I do appreciate the support. ♥

  3. Thank your son (and thank you) for taking this path. As the mom of two younger kids with nut allergies, I have so many fears. But your taking this path today means that I might not have to take it tomorrow. And if I do, at least by then it will be a path well-travelled and not so scary.

  4. You and your son are brave explorers, and my young son and I are benefiting from your courage and sacrifice some fourteen years behind you on the same path. Being an explorer involves liberation from skeptics among others, but the adage "nothing ventured, nothing gained" holds true. You'll make new friends along the way. Perhaps you didn't realize it, but we were right there with you and your son during the trial...in a sense we shared the drudgery of forcing down those 30 pills every day because, after all, you did it for us, too.

  5. I am glad to see your update! I had been wondering how your son was doing and which path he would choose as he sets out on his own. I am glad that he has found his own comfort zone, even if it doesn't completely match what you thought it might be. I have no doubt that there will be additional adjustments to that comfort zone in the coming months, but I believe that you have him well-prepared for to make them!

  6. Thanks for your update! We are right there with you in the jungle - making our way the best we can trying to weigh the risks and benefits of baked milk. So glad to hear that it's going well for you. By the way, once my son outgrew soy it took me a long time to try tofu. BUT, I finally made lasagna with tofu in place of ricotta and it was great! Also, there is a brand of soy cheese called Follow your Heart that works well to make pizza. Beware of most other soy cheeses - yuck. He's probably not ready for that much soy yet anyway.

    What would our allergists do without the Numbers? "Oh, you have a positive test, avoid the food, see you later." I think that will be their mantra until lawyers cease to exist.

    Hang in there and keep posting please!

  7. Just ran across your blog! I am 27 but have piled up quite the list of allergies. Anaphylactic allergy to all seafood, tree nuts, dust, and maple trees. Severe allergy to beef, pork and bananas. Celiac disease, so no gluten, wheat, rye or barley. Allergic to 98% of inhalants. Slight allergies to soy, carrots, egg whites. Not to mention allergies to several medicines. I'm extremely overwhelmed and frustrated. Where is a good place to start? I got most of these allergies after a surgery in 2004. Can that do it?

  8. Mike, I'm not a doctor so I really can't give medical advice. (Well, I could, but it wouldn't be any good.) I hope you are working with a board-certified allergist, as that is quite a list. It's important to make sure those are all true allergies (not just positive tests) and that there isn't something else going on, like hyper-IgE syndrome.

    I have heard of allergies occurring after a transplant, but this is pretty rare:


    Beyond the medical stuff, you start where we all start: with a list of trustworthy staples. These folks can help you out:


  9. Thanks for the info! Believe it or not, I've been to 2 different board certified allergists and this list is real that I deal with. Not just positive tests. The surgery I had was my gallbladder being removed due to gallbladder disease.

  10. Mike, one thing I have learned is that any changes to the gut environment can drastically change your immune system. There was a recent piece in the NY Times that got a lot of play:


    More and more, we're learning that the mix of gut bacteria can dramatically shift health.

    Fecal transplant is a new technique that's being used in just a couple of places...perhaps you could look into this.

  11. Wow - I just stumbled across your blog and just "liked" your FB page too. I have always believed that when you are really in need of something (in my case some consoling from a like-minded person) the "universe" delivers. We are 10 years on our journey - my son is almost 11 and we just got our yearly RAST back today - this year we have our first number (egg) over 100! Your post about the lady in the waiting room reminded me that the numbers going up are not really what matters but to see milk, egg, nuts, and peanuts not subsiding (and increasing) for an almost middle school boy crushes me from year to year. I love your analogy to The Jungle in this post as I feel like we are all battling through one for sure. I found my self earlier today already fast-forwarding to MS, HS and college and was so sad. Like I said, I just found you, and have gotten through only a few very pertinent posts. But I hope you continue to write - your words, more than any other food allergy blog are spot on with how I feel day to day. Thanks

  12. Elaine, I'm so glad you found me (us)! There are lots of us who are in our second decade of dealing with allergies, and while it can still be overwhelming and disheartening, I have to honestly say it's gotten a LOT better.

    If you haven't read through my blog posts about the FAHF-2 treatment, I would start there. My son did a clinical trial with an experimental drug last year and it seems to have really made a difference for us. We're talking about doing an open milk challenge after 18 years of allergy. As I'm sure you can understand, nuts and peanuts are not so tough if we could all just get milk and egg back. This is a very hopeful possible path in that direction.

    Hang in there - I'm more hopeful than I've been in a while that there really is a treatment right around the corner. Your son will not have to deal with this in the same way when he reaches college age. One step at a time!


Note: Only a member of this blog may post a comment.