The Mother of All Food Allergies

It’s rare to read something written by a doctor who understands both the medical and psychological aspects of helping children with multiple food allergies. That is why I recommend this article by Dr. Philip E. Putnam.

You can read the whole article, but here are some excerpts that I especially could relate to:

It is clear that the perception that ‘‘if your skin tests are negative then you’re not allergic to it’’ needs either to be abandoned or the terminology changed.

Our son has negative food allergy tests to every food we’ve tried except egg, but reacts when he eats the food. This is very frustrating because it means we are shooting in the dark when we try new foods. When talking to people about our food allergy testing, it’s common to get a reaction like, “Well that’s great that he’s not allergic to all of those foods.” We have to remind them that we want positive tests, so that we can narrow down the list of potential foods to try. Just because someone tests negative does not mean he is not allergic.

In the absence of perfect testing, double-blind placebocontrolled food challenges (DBPCFC) are necessary for confirmation of a relationship between the symptom and ingestion of the food. For delayed reactions, DBPCFC are reliable when clearly positive or negative, but when the symptoms are non-specific (sleep disturbance in a toddler, for example) they are fraught with the vagaries of the subjectivity beast. Because they are time-consuming and produce illness when a reaction develops, the challenge for us is to develop accurate, reproducible, noninvasive means for identifying the offending foods.

I’ve come to understand that doctors don’t take “non-specific” symptoms very seriously. If a kid eats a food and breaks out in hives, it’s pretty easy to see that there was a reaction. But sometimes telling a doctor that you’re kid is more irritable and is not sleeping well doesn’t get you very far. We’ve had numerous people, including doctor’s tell us that these things are just normal for a two year old, or they must just be sick or something. That sounds reasonable, until we tell them that the degree to which this happens is NOT normal, and happens predictably during each food trial. But my point isn’t to rant. My point is to agree with this article that tracking delayed non-specific reactions is difficult. I highly recommend keeping a journal of some kind and record what kind of symptoms are occurring. I keep a spreadsheet (complete with graphs), but I’m weird that way.:)

At the same time, it is not surprising that these families fail to successfully navigate the subspecialty labyrinth. The gastroenterologist did the endoscopy and didn’t see much, the biopsy results were underwhelming to the pathologist, and the allergist said the child wasn’t allergic because the skin tests were negative. Random elimination of foods didn’t help. The child is still sick. Now what? Of course, there is no simple solution.

We consider ourselves pretty attentive parents, and we are fortunate to have good health insurance. I often wonder what people in our situation do who do not have the resources and knowledge to navigate the health care system. I imagine that most of them end up undiagnosed. Our son would never have been diagnosed at all had we not been so persistent about getting to the bottom of his excessive reflux during his first year of life, while being told many times that his reflux would just go away and we shouldn’t worry about it. I feel for the children who don’t have an effective advocate.

Continuing food challenges in the face of repeated failure is emotionally taxing and, if not carefully done, commits the child to perpetual illness during the failed search for something to eat. It is essential to recognize these cases and suspend food challenges until such time as optimal health is restored, and until the child and parent are ready to give it another go.

This is a constant battle we have with our well-intentioned doctors. They want to keep trying more and more foods, one after the other. We see our child constantly sick. I agree with the article that there comes a time where a break from food trials is a good thing. Currently we are trying zucchini (initial results don’t look good), and after that we will probably take a break for a while.

The cost of elemental formulas is prohibitive for most families. The constant battle to obtain insurance compensation over insipid arguments posed by companies prepared only to preserve their fiscal security has forced families to engage media attention or legal representation, and has pushed many state legislatures to compel coverage. As evidence for the increasing problem of food protein hypersensitivity is published, perhaps the mainstream insurance community will withdraw its head from its bottom (line), formally recognize the importance of these conditions, and remove the barriers to immediate coverage.

We have been fortunate (so far) that our insurance has covered our son’s elemental formula, but we have to re-authorize it every month and live in the constant fear that it might stop being covered, resulting in an expense almost as big as our mortgage payment. We’ve been trying to save up in case that happens. We also know people who have stopped the elemental formula and resumed normal foods (even though their kids are allergic) because they could not afford the formula. I understand the insurance company’s argument (“We don’t pay for food”), but considering that this “food” is medically necessary (there is no alternative), and very expensive, certainly some balance needs to be struck to help families who are struggling with illness.

Rare Disease Day 2009

Saturday, February 28th, is Rare Disease Day 2009. Some might wonder why we need a day to recognize rare diseases. I would have wondered the same thing myself about two years ago. But as a parent of a child with a rare disease, I now understand that patients with rare diseases face a unique challenge. For more common diseases, research and investment dollars are much easier to come by. This is for good reason, because each dollar carries more bang for the buck. If you could help save 1000 kids for the same amount of money as it would take to save 1, which would you choose?

Last year American Express hosted a competition, of sorts, between charitable initiatives. The idea was to have people present ideas that needed funding, and then narrow it down to 25, based partially on public voting. The project named “EE – Save Sick Children”, aimed to raise money for APFED, finished second in the overall vote count. However, American Express decided to exclude the project from the final 25 projects. Am I angry about that? No. I don’t really blame them. I don’t know that the project was really more deserving than other projects. Still, this illustrates the difficulty those with rare diseases have in getting the research attention needed to help them.

It’s important that our society does not forget about those of us who have the double-challenge of not only having a chronic disease, but one that is not well known, understood, or researched. That is why I’m grateful that organizations like The National Organization for Rare Disorders have fought for people like me long before I knew I would care. Please watch this video and take a moment this Saturday to think how you can help those who are sick for no fault of their own, especially those struggling not only with their disease, but fighting a lonely battle:

How to Tape an NG Tube

A few months after my son’s Eosinophilic Esophagitis diagnosis, and after attempts to identify and eliminate specific food allergens from his diet didn’t help, my son was taken off all of food. He was put on Neocate, a brand of elemental formula which provides 100% of his nutrition. Like many kids with EE, this eventually also required a feeding tube since he would not take enough by mouth to sustain him. He got a nasogastric (NG) tube, which is a feeding tube that goes through the nose.

While the nurses in the hospital trained us on many aspects on how to deal with an NG tube, there was one thing that we had to figure out through trial and error: how to tape the thing! According to our doctor’s advice we were to change the tube every month (not a pleasant experience, but I won’t go into that now), but the tape on his face does not last that long before pealing off or collecting a lot of dirt, so we usually need to change it on a weekly basis. In fact, in the beginning the the tape would hardly last a day–because apparently the nurses didn’t know how to do it right. I have nothing against them. They helped us in a lot of ways. But it took a while to find one who taught us the taping technique that actually worked. Before this, we tried the minimalist approach, where you just try to put a few small pieces of tape in key locations to keep the tube positioned. This didn’t work, of course, as those small pieces quickly come loose. Then we tried the overkill approach, where we basically covered the entire side of his face in tape. Not only did it make him look bad, it also bothered him quite a bit, and still didn’t work very well. After a few unrelated visits to the doctor, we finally met a nurse who knew how to do it right. And I’m passing it on to you. I don’t expect this information to be useful to just anyone who randomly passes by this blog. But perhaps it will be useful to someone in the future in our situation.

Supplies

You will need two types of medical tape: Duoderm and Tagaderm, both of which are tape specially made for use on bare skin. You will want the “extra thin” Duoderm, which is more flexible. The one time we accidentally ordered the regular variety did not go as well. Where can you find them? We get the Tagaderm from Walgreens and the Duoderm from eBay (otherwise known as our “secondary medical insurance”), or you can get it from medical facilities.

Preparation

Cut a strip of Duoderm about 1 inch by 3 inches. Cut a similar strip of the Tagaderm about the same size (perhaps a little larger). If you get the Tagaderm that’s in 4”x4” sheets, you can just cut a sheet in half. After you take the backing off of the Tagaderm, you have to be careful when handling it since it’s a little like plastic wrap–it can shrivel up. You’ll want to cut it while the backing is still on, and then remove the backing just before you apply the tape.

Make sure the side of the face that you will be applying the tape is clean and dry.

Application

Place the strip of Duoderm horizontally on the cheek. You want it to be close enough to the nose so that there is not a lot of room between the nose and the tape for small fingers to get it and pull out the tube, but not so close as to interfere with the movement of the mouth. This is something you’ll get the hang of with practice.

Hold the feeding tube on top of the Duoderm tape. It is not sticky on the top. Then apply the strip of Tagaderm on top, creating a sandwich with the tube in the middle of the Duoderm and Tagaderm strips.

Why it Works

It makes sense when you think about it. If you’ve tried other techniques, you might have noticed that the tape gets pulled away from the face too easily. It’s very hard to keep it adhered. This method works because you first apply the Duoderm flush with the face, so it sticks very well. Then, by applying the Tagaderm on top with the tube in the middle, the Tagaderm sticks very well to the Duoderm–much better than it sticks to bare skin.

Also, since the Duoderm is flesh colored (as long as you are caucasian), and the Tagaderm is clear, it is about as discrete as you can get.

An added benefit is that you can sometimes just change the top layer of tape and leave the Duoderm in place.

If this was helpful to you, please comment. It takes some practice, but you can do it. Hang in there.

If my instructions weren’t clear enough, here’s the finished result:

Why This Blog?

My son was diagnosed with Eosinophilic Esophagitis in January of 2008, shortly after his first birthday. He has suffered from severe reflux since birth, so the diagnosis came as bitter-sweet. We finally had some answers, but some of those answers weren’t necessarily the ones we were looking for. Since that time, we have gone through a lot and learned a lot as well. Much of our time and effort is now spent trying to help our son feel well, prepare for the future, and continue to seek answers to our questions.

Naturally, we sought out others who were going through similar situations. My wife got involved in several on-line support groups, which made sense since she stays home while I work. However, I couldn’t help feeling left out. A few times I tried to see what was out there in terms of support, but I was disappointed for two reasons:

First, many on-line support groups require a fee to join. This is understandable since many of them are sponsored by non-profit organizations who have to find a way to pay the bills, and it’s not like I’m so cheap that I wouldn’t mind donating a little bit of money. But I think what turned me away was the thought that no-one would be able to see what I wrote unless they also paid. The parent who just found out their child has EE shouldn’t have to pay right away to find others that might have some answers to their questions.

Secondly, almost all participants in support-groups are mothers. In this day and age, you would think that shouldn’t make a difference to me. But I have to say it feels a little strange to jump in on conversations between 20 women and put in my two cents. That’s not to say that this blog is just for dads, but hopefully if there are other dads who feel the same way as I do, they can be comfortable here. And, as a dad, perhaps I can offer a different perspective.

Of course I don’t mean to be critical of those forums, but for me I wanted something a bit more free-form. A place where I can share what I’ve learned with whoever wants to read in my own way.

So what do I hope to accomplish. I hope that this blog isn’t just a “here’s my story” kind of blog. I hope to share some useful information and help others get closer to some answers, as well as find some of my own.

If you think that would be something you’d be interested in too, please subscribe to this blog and feel free to comment on my posts.

What is Eosinophilic Esophagitis?

According to The American Partnership for Eosinophilic Disorders (APFED), Eosinophilic Esophagitis is “an allergic inflammatory disease characterized by elevated eosinophils in the esophagus EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.” Got it? If you’re still confused, this video is the best introduction to the disease that I have seen, both from a medical and personal perspective:

Kudos to APFED for the video.