The Joys of YouTube

Uncle Tom has gotten Asher and I addicted to YouTube. Where else can I find Muppet and Sesame Street classics?

Here are some of Asher's favorites:
Mahnahmuhnah-I guess newborns really do absorb some of the world around them. I used to sing this to Asher all the time when he was in the NICU. I tried to sing something more touching or spiritual like hymns or lullabies, but I would start to cry. I didn't need to know the words to this song, and it made me feel better. And, now, Asher will walk around the house wanting to do a duet with me for this song. (Nate prefers this version.)

Swedish Chef making cake
Ernie catching fish

Not really classics but Asher loves them:

Elmo and the Goo Goo Dolls
Elmo and Andrea Bocelli
Do De Rubber Duck

This is one of my favorites.

Enjoy! (I'm sure we'll be finding more to post soon...)

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.

Belated Easter pictures

Better late than never!