Allergy Testing - Blood Results

The last time the girls had their blood tested, the allergist called and told me the results over the phone. Some of Rowan's numbers had gone up, and hearing the results was really discouraging. I'm not a cryer, but after hanging up, I felt tears welling up in my eyes. According to the numbers, they will not outgrow a few of these allergies. And why the heck did Rowan's go up?

The high numbers are burned into my brain, but I kept forgetting some of the lower numbers. We avoid them all anyway, so I guess the numbers aren't really that important. I finally asked our allergist to send us the test results, just so I would have them on hand.

These are the official results. I'm sharing them here more for my own records, not because I think anyone will be all that interested.

Here is the scale:
.35 – .70 = Low
.71 – 3.50 = Moderate
3.51 – 17.50 = High
17.51 or greater = Very High

ROWAN
Casein: >100  (Very High)
Milk: >100  (Very High)
Egg White: >100  (Very High)
Egg Yolk: 44.30  (Very High)
Peanut: 28.30  (Very High)
Turkey: 16.30  (High)
Wheat: 10.30  (High)
Chicken: 4.62  (High)
Pork: 3.15  (Moderate)

She is also allergic to Soy (last round was 4.6 - High), but I didn't see the numbers for this round.
So you can see why I was frustrated. She has a chance of outgrowing Pork. Great.

RYLIE
Peanut: >100  (Very High)
Shrimp: 3.55  (High)
Milk: 3.09  (Moderate)
Crab: 2.94  (Moderate)
Lobster: 2.85  (Moderate)
Almond: 1.53  (Moderate)
Poppy Seed .10  (Low)
Sunflower Seed: .68  (Low)
Sesame Seed: .54  (Low)
Various Tree Nuts: all around .5  (Low)

So Rylie has lower numbers overall, but unfortunately we still have to avoid ALL of the foods on their lists. Kids have had anaphylactic reactions, even with lower numbers. These tests don't necessarily gauge how strong a reaction will be. (In our case, both girls have had anaphylactic reactions, so we know there are certain foods that we have to avoid at all costs). And the higher numbers indicate that they will not outgrow those specific allergies.

Really hoping that the immunotherapy research trials at Duke will lead to something that becomes a mainstream treatment!

Reds say no to peanut-free baseball (again)

I contacted the Reds again this year, about the possibility of a peanut-free section for one game. Here is the email I received today, from Sean Brown, Director of Ballpark Operations:

Ms. H,

This offseason, we reviewed the policies other clubs have in place for their peanut free or peanut sensitive areas.

In doing so, we discovered that it would not be advantageous for the Reds or for the families of those affected by a peanut allergy, to host such an area within the ballpark.

I apologize we cannot accommodate your request or that of your children.

Thanks,
Sean

There are other Major and Minor League teams that are providing peanut-free sections for games, so please check Peanut Free Baseball for a list of teams and games in your area.

What to do when foods become allergens - Q&A

Here is a really good food allergy Q&A interview with Clifford W. Bassett, MD, medical director of Allergy & Asthma Care of New York, and faculty member of the New York University School of Medicine, both in New York City.

New to Food Allergies?

Make sure you check out this free 47-page e-book from Kids with Food Allergies. It is filled with essential information for parenting a food allergic child.

Learn about food allergies, anaphylaxis, diagnosis and treatment; find nutrition information and allergen avoidance lists for common food allergies and much more.

Article - The Truth About Food Allergies

The September issue of Parenting Magazine featured an article about Food Allergies: The Truth About Food Allergies. It mentions a few of the latest therapies that could be on the horizon, and some of the possible causes for the increase in food allergies. According to the Centers for Disease Control and Prevention, the prevalence of food allergies rose nearly 20 percent between 1997 and 2007, and it now strikes up to 8 percent of children under the age of 4.

Allergy Reminders for Halloween

Since Halloween is around the corner, I thought I'd repost these reminders I shared last year:

1) Bite-size, individually-wrapped candies may have different ingredients or be processed in different facilities than their regular-size counterparts, so don't assume they are safe just because you have previously used the regular-size candies.

2) The ingredient label on a bag of candy may differ from the ingredient labels on the individual candies inside.

3) Advisory labels such as May Contain, Processed in a Facility, and Processed on Shared Equipment are voluntary. If a candy label lacks these statements, it doesn't mean the candy is safe from potential cross-contamination with an allergen. The only way to know if your Halloween candy is safe from allergens is to contact the manufacturer. (Read "Is Your Food Really Safe?" for more information.)

4) If a product does have an allergen advisory label, the product should be avoided. Studies have shown that many of these products actually *do* contain allergens.

5) Chocolates are commonly cross-contaminated with milk, soy, peanuts or tree nuts.

6) Allowing children to carry candies that contain their allergens can be dangerous. The wrappers can become loose and fall off the candy in their trick-or-treat bag, or children may attempt to eat the candy without you knowing.

7) Halloween dangers don't disappear that night. Be aware that other children may sneak candy to school the following week and attempt to share it. Remind your food-allergic child not to accept candy from anyone but you.

From Kids With Food Allergies eNewsletter

'Natural Flavoring' can contain food allergens

Natural flavoring is a "catch all" term used on food labels and merits special scrutiny for those of us reading labels for a food allergic child.

According to the current U.S. F.D.A. food labeling regulations:
"The term natural flavor or natural flavoring means the essential oil, oleoresin, essence or extractive, protein hydrolysate, distillate, or any product of roasting, heating or enzymolysis, which contains the flavoring constituents derived from a spice, fruit or fruit juice, vegetable or vegetable juice, edible yeast, herb, bark, bud, root, leaf or similar plant material, meat, seafood, poultry, eggs, dairy products, or fermentation products thereof, whose significant function in food is flavoring rather than nutritional."

The new labeling law effective in 2006, The Food Allergen Labeling and Consumer Protection Act (FALCPA), requires manufacturers to declare if one or more of the 8 major food allergens are contained in a natural flavoring. The top 8 major food allergens are defined as: milk, egg, fish, crustacean shellfish, tree nuts, wheat, peanuts and soybeans.

If you are managing food allergies other than the top 8 major food allergens, however, the new law will not be of assistance to you in identifying the sources in any natural flavoring stated on a label.

In conclusion:

• Natural flavoring can be derived from just about anything made from a natural source! Major allergens like peanuts, tree nuts, eggs, milk, soy, wheat, fish and seafood can hide in natural flavorings as can countless other food-derived flavorings derived from other "natural" sources.
• New product labeling after 2006 will help with products that contain natural flavoring derived from the top 8 major allergens, but some old packages may still be on the shelves from 2005 and will not contain the updated labeling requirements.
• For allergens other than the top 8 major food allergens, don't make any assumptions about the safety of natural flavoring; be sure to check with the manufacturer to be sure it is safe for your child's unique allergy issues.

From Kids with Food Allergies.
Reference: Food and Drug Administration. (2004). Foods; labeling of spices, flavorings, colorings and chemical preservatives. In Food Labeling. (21CFR101.22). Washington, DC: U.S. Government Printing Office via GPO Access. Retrieved June 7, 2005 from: http://a257.g.akamaitech.net/7/257/2422/12feb20041500/edocket.access.gpo.gov/cfr_2004/aprqtr/21cfr101.22.htm

Cross Contamination Warnings are Voluntary

I was at a birthday party today, and we were discussing food allergies and school.
Now that Ohio has passed House Bill 1, our school district has a new rule: all treats that are sent into classrooms have to be individually wrapped, with nutrition and ingredients listed on the package. I happened to mention that this was a Catch-22, because now foods being sent in will be from a bakery, where there is a higher chance of cross-contamination. Someone else said 'yeah, but that would be listed on the label'. Well, that's where it gets tricky.
Did you know that cross contamination warnings are voluntary? Even if a company makes cupcakes on shared equipment with cookies that contain nuts (or other allergens), they are not required to state this on their packaging.
So how can you tell if a product is safe for your child with food allergies? Please read Is Your Food Really Allergy Safe? from the Kids with Food Allergies website. And when in doubt, call the manufacturer!

Cincinnati Reds respond to peanut-free request

The Reds responded to my inquiry regarding a peanut-free (or peanut-controlled) section during one of their games. They basically said no...but they did send the girls a really cool package! They were so excited when it came in the mail. It contained kid-sized Reds Snuggies, baseball cards, book covers, magnets, and stuffed monkeys with Reds and Chiquita banana logos. I really appreciated that they took the time to send us something.

Here is the response I received:

Ms. H,
As you already know, we do not have a peanut free zone at Great American Ball Park. We have previously looked into this idea, but even if we are able to create a peanut free suite, we cannot guarantee a peanut free path to the suite, nor could we guarantee that our ventilation system was free of any peanut dust. The same issues would arise if we established a seating area as peanut free. Even if we could guarantee a path into the ballpark, we could not keep a breeze from off the river from blowing peanut dust into the established peanut free zone. I know other teams have established “Peanut Free” areas, but in talking with some of these teams, I would consider them “peanut sensitive” areas. I would consider the Padres a “peanut sensitive” area.

It is unfortunate we are unable to accommodate those with a peanut allergy. I know that this can be a very sensitive allergy for many and we do not want to put anyone in harms way. If we do decide we are able to offer a peanut free or peanut sensitive zone in the future, I will keep your information on file and will be sure to contact you directly. I can assure you that you are not alone. If you could let me know your address, I would like to send your child a care package to keep him a Reds fan until we can find a solution to our peanut allergy dilemma.

Thanks,
Sean Brown - Director of Ballpark Operations

Sean and I have continued to exchange emails about this, and I hope we can eventually come up with a 'peanut-controlled' area for one or two games.

The Allergen-Free Baker's Handbook

Cybele Pascal is my hero. We own her Whole Foods Allergy Cookbook and love it. Due to Rowan's allergy to chicken and turkey, we haven't tried many of the dinner recipes...but we use the muffin recipes almost every week. They're super healthy - made with whole grains and no refined sugar. And most importantly, no allergens.

I am really excited about her new cookbook, dedicated to allergy-free baking. The Allergen-Free Baker's Handbook is available on Amazon and I can't wait to try some of the recipes. Our girls can never have store-bought bakery items, so I love being able to bake safe treats for them at home. The red velvet cake looks delicious.

The Bugabees: Friends With Food Allergies

I love the concept of this book. I'll probably buy it for our girls and also give a copy to Rylie's preschool classroom. 'A whimsical tale of eight friends with food allergies. Food allergies are never fun, but best friends always are! This light-hearted story explores the daily routines of eight best buggy friends such as Beetle, Cricket and Butterfly, as they face their respective food allergies with positivity and poise.' Available on Amazon for $12.20. Hardcover, 32 pages.

Rowan's updated blood test results

We had Rowan's blood re-tested about a month ago to see if anything had changed with her food allergies. We just got the results and they were very disappointing.

The range for moderate is 0.7 - 3.5. High is anything over 4.0.
Last year, she was at an 85 for eggs and milk...extremely high. Peanut was around 9.34. Wheat was 5.3, Soy was 4.6. Chicken and turkey weren't in the blood test, but the skin test showed she was allergic.

This year, her numbers actually went up - which surprised me, because she was already so high. Her current numbers are below. Anything over 4.0 is high.

Milk: above 100
Egg: above 100
Peanut: 28.3
Turkey: 16.3
Wheat: 10.3
Chicken: 4.6
Pork: 3.0

I was hoping that the turkey, chicken and wheat numbers would drop and we could try reintroducing these foods. She was already eating a little bit of wheat every day, so I need to ask the doctor about that one. For now we'll try to avoid it. Citrus still makes her wheeze, so we'll avoid that too.

The numbers of the top 3 or 4 on the list are an indication that she will not outgrow them. I feel like it would be a miracle if she could just outgrow a few of them.

We'll just keep avoiding all the things we've been avoiding, and be super careful about touching her after handling any of these foods. Rylie's last test was above 100 for peanuts, and 3.0 for milk and shellfish, so nothing new there. We never go anywhere without our epi-pens!

Possible Changes to US Food Labels

Has anyone seen the articles regarding possible changes to U.S. food labels? Among the suggested changes would be to have minor ingredients and allergens listed separately, with allergens in red. I would love to see these changes happen - it can be easy to miss hidden allergens in long ingredient lists and this would help tremendously. I also work in packaging design, so this could effect some of the processes we have in place.

Here is an article from the Well Blog on the subject: A Makeover for Food Labels. Ms. Pope also links to other sources with additional information and insight on the topic.

Allergies, Asthma and Autism on the Rise

I saw this article on the daily green and it really caught my attention. It was written by Robyn O'Brien, the founder of Boulder, Colorado based AllergyKids. It's organization dedicated to protecting the 1 in 3 American children with autism, allergies, ADHD and asthma. She has been Called "food's Erin Brockovich" by the New York Times.

I truly believe that genetically modified and engineered food is one of the reasons why food allergies on are on the rise, and Robyn seems to agree:

• Did you know that food additives and dyes have been linked to asthma and ADHD?
• Did you know that insecticides have been engineered into our food supply? Yikes!
• Did you know that there is a synthetic growth hormone introduced into milk in 1994?
  
• Did you know that Kraft doesn't include Yellow #5 in the mac 'n cheese boxes they sell overseas?

If you're interested, read more. I was really surprised to learn that there are chemicals that have been added to the U.S. food supply over the last ten years that have either been banned or labeled in countries like Australia, Europe, the UK, Japan....even Russia – because of the health risks they present.

Back to School - Emergency Action Plan

If you have a school-age child with food allergies, don't forget to provide an Emergency Action Plan to your teacher and school nurse.

In addition to all the medical forms required by the school, prepare with the help of your child’s doctor a one-page “Emergency Action Plan.” This document should include:
1) the foods your child is allergic to;
2) the possible symptoms of an allergic reaction;
3) the treatment that should be administered and under what circumstances;
4) contact information for the rescue squad (911), your child’s doctor, and you;
5) current picture of your child;
6) doctor’s signature.
Here is a link if you need a sample plan, available from the FAAN website.

Provide the school with epinephrine auto-injector(s) and any other medications as recommended by your doctor. Make note of the expiration dates.

Talk with your child. Reinforce the importance of following all the “food allergy rules” you’ve taught her.

Treats by Home Free

We bought some cookies made by Home Free at Whole Foods over the weekend. All of their treats are made with organic ingredients and are peanut free, egg free, and dairy free. Rylie typically doesn't get to eat store-bought baked goods, so she was really excited to have a cookie that was safe for her to eat. They also have some great baking ingredients available on their site for allergy-free recipes.

Rylie - allergy testing update

Rylie hasn't been tested for allergies since she was 2, so today she went back to Dr. Ghory for skin-prick testing, and to review the results of her RAST (blood) test. Jamie took her and said she was not happy about the skin prick testing on her back, and she was really squirming. They were there for about 2 hours. I was glad to get a break and not have to be the one to take her - thanks Jamie.

The results are the same. Still severely allergic to peanuts, and still moderately allergic to milk and tree nuts. The peanut levels indicate that she will not outgrow this allergy. She will more than likely outgrow the milk allergy, but not anytime soon. We also found out that she is moderately allergic to shellfish.

I was hoping her milk numbers would be lower, but at least it's not life-threatening. Looks like we'll just keep doing what we're doing.

Cute EpiPen Carriers

Allergy Haven has a really cute selection of EpiPen carriers.

Store your EpiPen, Benadryl and other emergency necessities in this epi-pen tote. Tote has capacity to hold 2 EpiPens and an emergency Benadryl dose. Top flap has pocket to hold any additional items like an asthma inhaler. They also have strap packs that older kids can wear around their waist.

Safe Easter Candy

Finding safe easter candy can be a challenge when your kids have food allergies. Most jelly beans are made in facilities that process peanuts. Thanks to Jennie P. for reminding me that Starburst Jelly Beans are safe for kids with peanut allergies.

Divvies also has a good selection of allergy-free candy. They even have safe chocolate bunny rabbits! All Divvies candy are certified by their manufacturers to be peanut-, tree nut-, milk-, and egg-free. It's a little pricey, but it might be worth the splurge so your kids don't feel left out.

Check out their site for safe cookies and cupcakes, too.

Peanut allergy - ingredients to avoid

Here is a list of ingredients to avoid for peanut allergies.