So long, Elecare...hello, butter!

When Asher was diagnosed with Eosinophilic Gastroenteritis, an allergy disorder, 3 1/2 years ago, this is what I longed to see. To have some sort of crystal ball so I'd know just what food allergies he would "outgrow."

Throughout Asher's decline, diagnosis and medical care, we've been tremendously lucky. We've been blessed with smart and caring doctors in Boston and Phoenix. He loved his vanilla Elecare, a formula made of amino acids, the building blocks of all food. While some kids have to get feeding tubes to tolerate the stuff because it doesn't taste that good, Asher would drink cups of it (which was good because he had to drink 6-7 cups a day to avoid getting a feeding tube).

But, his Elecare was expensive ($600 a month). I'll spare you the tirade of trying to hold insurance companies accountable when they broke an Arizona law that mandated that insurance companies pay 75% of the price of formula for kids with Asher's disorder (I'm looking squarely at you, Arizona Blue Cross/Blue Shield).

Last year, about this time, we did a soy trial, and Asher passed, which means he didn't throw up, get hives, have diarrhea or complain about an upset stomach. This meant that provided Asher kept up with his growth, we could drop the Elecare, which he has done (way to grow, Asher!).

But, Elecare has been my crutch. When Asher wasn't gaining weight and refused to eat what I gave him and had such a limited diet, I felt like a better mom when I gave Asher the caloric-dense beverage. We haven't used it for 9 months now, and I'm finding that I'm just now ready to give it away. (Anyone want free Elecare?)

For a couple months, I've been feeling like it was time to do the last food trial I'm comfortable not doing in a doctor's office--dairy. (For the record, Asher's reactions to peanuts and eggs are so volatile and his lab work predicts that he probably won't outgrow these allergies, so I'm very reluctant to try those at home or, er, ever.)

This past week, I made Kirstin's delicious sugar cookies, but I used real butter instead of our usual Smart Balance substitute (oh my goodness! I forgot how delicious butter-based cookies are!). Every day, Asher gets 2 sugar cookies to see if there's a threshold for the reaction.

And, so far, so good! He doesn't show any signs of gastrointestinal distress, which is always my primary concern and will stop a food trial. He does get a slight red rash around his mouth, but once I wash his face, it goes away. And, if that's all that happens, I'm comfortable with calling the trial a success in another week.

I like to think this disorder is behind us, but I've been on enough support group listserves to know that this may not be the case. Still, I remember as a member of those listserves and as a more participant of our local EOS support group, wishing that I heard more success stories.

I suspect that there are more like mine, but as our kids get better, we forget walking up and down store isles in tears, wondering what we could make for dinner, or missing trips because packing all that food was just too hard, or sitting at the computer, crying as we read other families sharing their stories.

We just get busy, and truthfully, I feel a little guilty when I think of the families who started this journey around the time we did. We met some wonderful, generous people (you can see them and Asher in the video below, which was done as a fundraiser for this great site). It's hard to think about how as they lost foods, we gained more. But, I've been thinking that as someone with a success story, I owe it to these people to share our story.

Peter Piper Pizza

Asher, Luke, and I went to Peter Piper Pizza this week. They have an all-you-can-eat pizza buffet for $4.95 with kids 3 and under eating free. We stayed there for almost 2 hours with Luke and Asher playing all the games (please note: if you teach my kids that the games use tokens, I'll have to kill you).

But, the best part about this is our allergy experience. I HATE going to new resturants with Asher. I have to speak to the manager, look at their food labels, and I can tell that many of these managers are thinking "Oh, it's one of those crazy moms who thinks her kid is allergic to everything."

Our shift manager, Manuel, totally rocked. He made a special cheese-free pizza for Asher, put it on the pizza buffet so we didn't have to pay for it, AND came and found us 1/2 an hour later to make sure Asher hadn't had a reaction.

So, we'll add PPP to our summer rotation (and seriously, don't tell my kids about tokens).

Eosinophilic Gastroenteritis on the Today Show

The family featured is from the UK, where they call the disorder, Eosinophilic Enteropathy. I'm always interested in hearing a "big kid" with the disorder because most of the patients I know are under 5.

BINGO night!

FAMILY NIGHT BINGO
Saturday, Oct 20th, 6-9pm
Red Mountain Multigenerational Center in Mesa
(on Power Road and University)

Asher's eosinophilic disorders support group is going to do a Bingo night. It costs $5 per person (ages 3 and up). There will be prizes for every winning Bingo card. It should be fun, and the money we raise will all go directly to medical research for this disorder.

Some days, I think, "How involved do I need to be in this? Asher is doing well. Frankly, he's got enough foods he can eat now that his diet is nice and varied--we even have a few fast food resturants."

But, there are lots and lots of kids who aren't doing as well as Asher. Kids who sit and eat ice chips while the rest of their family eats dinner. Families who sneak their meals while their toddlers play because the toddler still doesn't get that he or she can't eat what every one else does. Think of all the social events we go to where food is the focal point of the gathering...

I still remember a post from my Yahoo groups over a year ago when the topic was "Helping your kid through a hard day." One mom wrote, Sometimes, when my daughter is throwing up and sad that she only gets her formula, she turns to me and says, 'Mom, do you think Dr. Putnam (the current expert on this disease) is working with those rats right now to make me better?'

Even if it's 1 am, her mom always answers, "I bet he is.

Ok, off my soapbox...come enjoy a night of Bingo! We will!

Final Video Clips for Eosinophil Awareness Week

Just wanted to finish the week with two video clips

If you go to this website and go to the side bar on the right, there's a link called "View Just a Glimpse Video." (Warning: it makes me cry every time I watch it)

And, here's a video about a girl from Kansas who was selected to go to Capitol Hill as a patient with an eosinophil disease. Most of the kids in Phoenix who have this disease are Asher's age, so I was curious to hear what a kid who can talk would say.

I'm glad I did this whole week of blogging. It was helpful for me to realize that I'm not all that incompetent when it comes to this disease. It seems I've have learned a thing or two after all! Thanks for reading this week!

Food Items that help me

Missing our favorite dinners was a big concern to me when Asher was first diagnosed with food allergies. I've learned a thing or two about cooking without the "Big 8" allergens (90% of all food allergies are: dairy, soy, eggs, wheat, tree nuts, peanuts, shellfish, and fish).

I've found a lot of foods can be just as tasty if a. you're only substituting one or two ingredients and b. said ingredient is not a major component of the recipe, which means there's just not good way to make macaroni and cheese (unfortunately), but with a little maneuvering, I can make an acceptable chocolate chip cookie with palm shortening or a safe margarine.

Spectrum palm shortening-This is the only soy-free vegetable shortening I've found. I prefer it to coconut oil (another good shortening/butter substitute) because coconut oil can flavor the dish more than I like.

Mother’s margarine-I ration this stuff very carefully (I have 12 tubs in my freezer) because it's the only absolutely safe margarine I've found--many margarines say they may contain soy oil; this one promises not to because it's made to be safe for Passover, and thus, it is only available at kosher grocers around Passover, which is usually in April or late March.

Chocolate rice milk-Asher doesn't drink much besides his amino-acid formula, but now that I've had to go dairy-free for Luke, I've found this to be the best alternative. Original soy and rice milk is sometimes too sweet for me, and I don't like rice or soy aftertaste. I like the rice chocolate milk; I think the chocolate flavor takes away some of the "riceyness."

Enjoy life cookies and granola bars-While their items, truthfully, taste a little funky, I buy them because they save me from having to make treats for Asher from scratch, and he likes having stuff come out of a package like other kids in nursery.

These are foods I would buy even if we didn't have to deal with allergies:
Costco fruit snacks-always a handy snack/bribe when we're out and about.

Costco guacamole-dairy-free! Asher and I eat this every day for lunch on chips or in a bean burrito.

Horseradish-Now that I can't have cheese on my sandwiches, I sometimes put soy cream cheese in place of the cheese, but I don't like the taste of the soy cream cheese--I just like the fat, I guess :). So, I put horseradish on with it to cut the soy taste when I have a roast beef sandwich.

Advocado-Another handy "creamy" ingredient, which tastes better than the soy cream cheese/horseradish combination on turkey and chicken sandwiches.

Bacon-My salad consumption has gone way down since going off daiy. I think I usually used salads as an excuse to have goat or feta cheese. Now, I try and put bacon, advocado, and nuts on to make up for my lost cheese.

Asher's Turkey Nuggets

I’m not very good at creating recipes, but here’s my first attempt since I wanted Asher to have something when other people are eating chicken nuggets. I think these nuggets are quite tasty in a salad.

Turkey Nuggets

1/4 cup all-purpose flour*
1/4 cup dry bread crumbs**
1 t garlic powder
1 t dried thyme
1/2 t salt
1/2 t black pepper
3/4 pound skinless, boneless turkey breast or fillet, cut into thin strips
1/2 c original rice milk
2 T-4 T canola oil

Combine first six ingredients in a shallow dish, and set aside. Combine the turkey and rice milk in plastic bag; seal and marinate in refrigerator for 30 minutes.

Remove turkey and discard marinade. Heat oil in nonstick skillet. Dredge turkey strips a few at a time in breadcrumb mixture, tossing to coat. Add turkey to pan, and cook 3 minutes on each side or until done.

*Rice flour or chickpea flour would work well if dealing with a wheat allergy
**Wheat-free bread crumbs would work here

Eating Out With Multiple Food Allergies

Asher at 18 months

Asher at 18 months old after a visit to Phoenix Children's Hospital Emergency Room. This is what happened to Asher after we went out to dinner and gave him some food we thought was safe but didn't ask to confirm. (This is also after Asher was treated at PCH--his mom and dad were too freaked out about how he looked to take a picture before treatment.)

The second picture is why Wendy’s and In-and-Out Burgers will always have a special place in my heart.

In-and-Out is special because it is the first restaurant I found that made one thing that Asher could eat: French fries cooked in canola oil.* When Asher’s diet was much more restricted, we were grateful to have one place we could go when I needed a night off of cooking. Nate and I would get cheeseburgers, and we’d bring Asher some turkey, a banana and with those French fries, he had a pretty complete meal.

Wendy’s is special because it is everywhere, and it is the only fast food restaurant that has a complete meal that I can order for Asher with complete confidence: a kid’s meal with a fruit cup instead of French fries (which are cooked in the same oil as chicken). I was so excited to order that for him the first time. I thought, “Now, he won’t feel bad when all the rest of his friends are eating fast food at the next playgroup!”

Other restaurants have been helpful; the Biltmore’s Bamboo Club was the best—the chef made Asher a special version of orange beef!

Here’s what I’ve learned about eating out when dealing with multiple food allergies:

1. Go at off-hours when the staff have more time to accommodate you. If we go to lunch or dinner at the time everyone else goes for lunch and dinner, I just pack Asher’s food. Sometimes, waiters don’t have the time to run back and forth checking with us, then the chef, then us.

2. Research on the Internet. If the restaurant has a website, rarely they’ll list allergens. That’s always great, but even if they don’t list allergens, I like to look at the menu online. This gives me an idea of what Asher might be able to eat.

3. When I find some items that Asher might be able to eat, I call the restaurant (again during off-hours) and ask to speak to the manager. The managers I’ve spoken with are always nice and find out the ingredients for me so I can figure out what Asher can eat.

4. Not to be picky, but well, I have to be as seen by the above pictures…when a waiter is impatient with my request or does not know the answers to my questions and refuses to ask the chef, I pull out Asher’s back-up meal. This behavior on the part of the waiter signals to me that he or she does not get what I’m saying and a mistake is much more likely. I figure it’s better to be safe than have Asher accidentally get something he’s allergic to, which could lead to an Epi-Pen injection ($70), a dose of Bendryl, and a trip to PCH’s Emergency Room ($100 co-pay, 5-6 hours).

5. Write thank you notes. When we have a helpful waiter/manager/chef, I tip generously and write a thank you note. It's hard to accomodate us, and I want to make sure that they know that I appreciate their help (and hope they'll continue to do so with other food-allergic people).

*I’m not sure if all In-and-Outs cook their French fries in pure canola oil. Check yours before ordering if allergic to soy.

National Eosinophil Awareness week is official!

Today, Rep John B. Larson (CT), who first brought the Resolution for a National Eosinophilic Awareness week to the House of Representatives, gave a short speech (look on the right bar for the link to hear the speech) about the need to this week before the Resolution was voted on.

I love that he talked about Congress' responsibility to get funding for research for this disease...makes me wish I had a congressperson like that!

My favorite allergy websites

For Eosinophilic diseases' and food allergy information:

American Partnership for Eosinophilic Disorders (APFED)-this is the website I refer to anyone if they're interested in finding out more about what Asher is dealing with. It has good medical explanations without a lot of jargon.

Campaign Urging Research for Eosinophilic Disease (CURED)-another good website about Eosinophilic diseases.

Kids with Food Allergies-I love this website! It has the best variety of recipes for people with multiple allergies and message boards with topics on just about any question I've thought of!

The Food Allergy and Anaphylaxis Network-a great website also with a recipe section and information about how to get politically active that I find helpful.

For recipes: because I can't use dairy and soy in my cooking, I often search the web for "Asher-safe" meals. (When he was first diagnosed, I felt so limited by his restrictions. I could only think of one dinner that was safe, so he got turkey bacon, fried potatoes with onions, and a fruit for dinner every night for a week.) While I like some of the recipes on allergy websites, sometimes, they've tried to substitute too many things or they just don't sound appetizing to me. So, I prefer to stick with regular recipe websites and find stuff on my own, except for the first listing...

The Whole Foods Allergy Cookbook: I cried the first time I opened Cybele's cookbook. It was the first allergy cookbook I found that had dishes that sounded good--food allergies or no. Finally, we could all eat the same thing for dinner! I've loved every lunch and dinner dish of her's that I've tried. I check her blog occasionally to see if she's got a new recipe on there or a review on a new allergy food.

Food Network: I LOVE Food Network's website. I use it weekly. My only complain is that you it doesn't have an "exclude food" option like so many recipe websites do. I often check to see what programs have been on lately, and if the recipes sound good or like they might be Asher safe, I check them out. I've had excellent luck with Giada De Laurentiis' recipes. I was thrilled when she made this artichoke pesto (I miss pesto); I substituted roasted pumpkin seeds for the walnuts she used, and left out the Parmesan cheese. It's quite delicious!

Epicurious: has recipes from Gourmet and Bon Appetit magazines with the lovely feature of excluding certain ingredients. I find it helpful to read the comments people leave about changes to the recipe and of course, to find out if they think its any good.

National Eosinophilic Awareness Week

I had a nice Mother's Day this year. I got earrings from the little boys and a microplane from Nate. But, the best present I got was the news that the support group for Asher's disease had gotten enough congresspersons to pass a National Eosinophil Awareness Week.

Most of us know how histamines are related to allergies and how miserable they can make life. But, a few years ago, doctors learned that histamines can trigger the production of eosinophils in some types of allergic reactions. Eosinophils are white blood cells in the immune system.

Oftentimes, people with food allergies eat something they are allergic to and histamines are triggered, creating symptoms like itchy throat, rashes, or an analphalytic reaction, to name a few. Less commonly, the reaction continues, and eosinophils come to the scene of the reaction. They create other symptoms that a histamine allergic reaction can also show like vomiting, diarrhea, and difficulty swallowing. This is what happens to Asher and lots of other people. (Click here if you want a really good explanation of eosinophils and Eosinophilic diseases.)

Asher was diagnosed with Eosinophilic Gastroenteritis last May (almost a year ago today in fact). It was a hard diagnosis because many patients with EG cannot eat any food. Can you imagine not eating? Worse yet, can you imagine not being able to feed your kids? For a while, we weren't sure if this is what would happen to Asher.

But, Asher is lucky. He has a mild form of Eosinophilic Gastroenteritis. He is only allergic to dairy, soy, eggs, tree nuts, peanuts, shellfish, and fish. Lots of these kids are allergic to ALL food. These kids throw up when they try to eat anything. They have feeding tubes. They can't gain weight, and they're smaller than they should be.

I'm lucky, too. We have a great Phoenix support group, AZ-APFED, and our online support group have been great resources. I meet amazing moms in these groups: moms who fight insurance companies, moms who create recipes out of the two or three "safe" foods their kids can eat, moms who stop eating the foods their kids are allergic to so that their kids can continue to be breastfed.

Eosinophilic Gastroenteritis is still a "new" disease, so these support groups are important for getting people together to figure out how to spread awareness in the medical community, how to get insurance companies to cover amino-acid formulas and supplies, or how to entertain your child who can't eat while everyone else sits down to Thanksgiving dinner.

No one knows this disease's long-term impact, why so many more people are showing these symptoms, or how likely remission is for those who have it, which is why getting this National Eosinophil Awareness week is an important first step for our little group.

In honor of this week, I'm going to post something every day that I've learned as a mom dealing with this disease.

US House Resolution 296

Some of you may know that Asher was diagnosed with Eosinophilic Gastroenteritis (more information about this disease is at www.apfed.org). This week, patients and their families are contacting our US representatives to try and get a bill passed (House Resolution 296) that will create a National Eosinophil Awareness week in May, which is the first step in increasing education and getting funding for eosinophilic diseases. This is the letter I sent to my congressman. If you feel so inclined, we'd love for others to call, email or write their representatives for support for this bill.

Dear Congressman Shadegg:

As the wife of a small business employee and the mother of a chronically-ill child, I was glad to see your work on making health care more affordable and easily accessible to small businesses and individuals last year.

Because of your background in health care reform and your position on the Health subcommittee, I am writing to urge you to co-sponsor House Resolution 296: Supporting the goals and ideals of National Eosinophil Awareness Week, and for other purposes, which is currently sponsored by John B. Larson of Connecticut.

Not much is known about eosinophilic diseases, and I am hoping that having a National Eosinophil Awareness week will help educate and raise awareness about these diseases. Currently, 50,000 people in the United States have been diagnosed with an eosinophilic disease. Our two-year old son, Asher is one of them. He was diagnosed with Eosinophilic Gastroenteritis at the end of May 2006. This disease means that he has allergic reactions to certain foods that cause a flood of allergic cells, called eosinophils, to attack his entire digestive system.

We consider ourselves lucky. Asher was diagnosed relatively quickly, can eat a fairly varied diet, and we can afford to pay for his amino acid formula that our health insurance is currently refusing to cover. However, some families go for years with children that are chronically ill and underweight. Some diagnosed families struggle to pay for formula that can cost about $800 a month.

This is why I’m hoping that you will co-sponsor this resolution. Thousands of eosinophilic families deal with expensive amino acid formulas, restricted diets (or they cannot eat anything because of their disease), and uninformed healthcare providers. By passing this resolution, we’ll be able to raise awareness so that people who have not been diagnosed can be to get the care that they need, and we can work towards finding a cure for this disease.

As a mother who researches and studies every day to find ways to make life easier for my son, I am committed to helping him and other families that suffer from this affliction. I would be happy to help you with this important work in any way that I can.

Best Wishes,

Emily Clyde Curtis
Phoenix, Arizona