January 31, 2013

Kissing-Induced Anaphylaxis?

She may have her first kiss a lot sooner than we want to admit.

OK, maybe you can't get anaphylaxis from kissing.  Or can you?

I consider myself far from having to worry about any of my kids being interested in kissing, as I'm sure just the thought of kissing a girl makes my 8-year-old son cringe.

"Hey Tristan, what do you think about kissing a girl?"

"It's weird."

"Remember that time that Ella kissed you?  You guys were around 3."

"Yeah, I didn't like that."

But one of these days, in the hopefully far but very really possibly near future, he will get curious.  And when that time comes, I want him to be armed with answers to any questions he might have about his food allergies and kissing.

In Mylan's recent study to understand some of the gaps in anaphylaxis awareness, where 300 families with food allergic children were surveyed:
  • One in 3 parents reported that their children had experienced a life threatening allergic reaction on Valentines Day
  • Less than half speak to their children about potential allergy risks they might face on Valentines Day, like kissing someone who has eaten something they're allergic to, or candy that may be passed out at school.
  • Less than half tell their teens to tell their dates that they have a life threatening food allergy.
  • Less than half remind their teens to bring their Epi-Pens with them before leaving the house.
Is this data at all surprising?  I don't really think so.  Conversations about dating, kissing, and risk-taking are hard enough.  We all hope that when it's time to have these difficult talks, we'll be courageous enough to speak, and our kids will be open enough to listen.  With the intermingling of the issue of serious food allergy, our task becomes only that much harder--and that much more critical.

While many of us still have young children, they will soon be tweens, then teens, and beyond.  As much as we'd like to bottle them up and keep them their 5-year-old selves, we can't.  We may feel like our allergy conversation thus far is open, honest, and clear, and maybe it is; and maybe it's not as thorough as we'd like it to be.

At this week's Food Allergy Blogger Summit in New York City, where we and 14 other inspiring food allergy bloggers met with leading experts in the food allergy field, Allergic Girl Sloane Miller talked about effective communication.  Miller stressed how vital it is to create a clear allergy action plan, starting in the allergist's office with a one-page summary of your child's medical history, and a list of questions for the doctor developed with your child.

After visiting the allergist, your child should know exactly what she is allergic to, what is to be done in the event of an accidental reaction, and that she has her medication with her at all times.  She discussed the importance of cultivating a "human relationship" between your child and her allergist at a young age.  According to Miller, it is crucial to understand that the action plan is ever evolving and changing, as new questions arise and new life stages approach. 

You and your child know exactly what she is allergic to, how to avoid it, and what to do in case of emergency...now what?  When teaching your children to communicate their food allergies, the goal is to let them understand that food allergies are simply are part of their identities, of who they are.  Miller says to teach kids to be 1) clear, 2) factual, and 3) firm (unwavering, without question, apology, or aggression) when communicating their food allergies, and to keep it to 3 sentences or less: 

"I've got severe food allergies, including egg, dairy, and nuts.  I can get hives, and even stop breathing.  I've got my Epi-Pen with me at all times, and will use it if I need to."

Help your child communicate clearly by practicing with her: have her write it down or role play to help them find their voice, and empower her with the courage she needs to face sticky situations.  Miller says to teach her never to eat for someone else--if she feels at all uncomfortable or unsure about how safe a food is.

Very importantly: a restricted diet doesn't mean a restricted life.

Once armed with the tools to communicate, make sure your child knows to create positive relationships--the people who will support him and help keep him safe.  Miller categorizes these people as: his inner circle of friends,  his food allergy allies (like a chef or server who is willing to listen to you and accommodate your needs), and online and offline resources.

So, can kissing induce anaphylaxis?  Dr. Rushi Gupta, author of The Food Allergy Experience, says a good rule of thumb would be to wait 24 hours after your kissing partner has eaten a known allergen, and make sure he brushes his teeth thoroughly before kissing (hey, that's good advice all around).  But to be sure, that's one of those questions only your doctor can answer accurately, depending on the severity of the individual's allergies.

At the same time, I think we can reduce the risk of anaphylaxis through kissing by teaching our children to be effective and confident communicators and nurture positive relationships.

So when girls no longer have cooties, I may need to broach a few new subjects with Tristan.  Until then, I will revise and clarify our allergy action plan, and keep an open line of communication with him by taking advantage of those teachable moments, those moments where he's just cracked the door open enough to let me in and be a part of his life.

January 28, 2013

New Hope for a New Year: Dr. Nadeau & Promising Research for Multiple Food Allergies

"I've had no allergic reactions yet this year, right mom?" asks my 8-year-old with a smile.

Yeah, I guess you could look at it that way.  Although it was just December when we ended up in the ER due to anaphylaxis.

I'm glad I have my son to look on the brighter side of things for me.  Like I've said in the past, he is incredibly resilient.  Although each new year brings with it new challenges that make managing Tristan's allergies even more difficult, the thought of what a happy and strong child I have encourages me to keep him healthy, and not let his allergies prevent him from doing whatever he wants to do.  Our upcoming challenge: a two night sleepover in Marin with his classmates.  It will be the first of many overnight trips he takes with his school.  I am terrified and elated for him, but mostly terrified.

My hope is that my boys & others like them will at some point never have to worry about a food making them sick. 
Honestly I really don't think of myself as a half-empty kind of gal, but when it comes to thinking about my children's food allergies, I don't usually let myself think about a life where their allergies get better--a life where parents don't take offense at the thought of packing something other than peanut butter sandwiches for their kids' lunches, where allergy bullying doesn't exist, or where I don't ever have to worry about my child getting sick or worse from eating the wrong thing.  I have to, for my own fear of disappointment, remain conservative at all times.  I have to answer questions like, "Do you think he'll ever grow out of them?" with a conservative "No, I don't think so."  I have to plan ahead for future budgets to include several thousands of dollars in Epi-Pens, medical treatments, and other allergy medicines.  I have to toughen the kids up for future disappointments, visits to the doctor, and a lifetime of always feeling a bit left out of things.

But with the new year, and successful treatment of Tristan's latest allergic reaction, I must admit it does feel like a nice clean slate.  And with some exciting activity in the allergy world, I am cautiously optimistic about the year ahead.

Facebook, via some allergy wise friends, brought my attention to a few wonderful developments that piqued my interest: positive feedback from participants in Stanford's peanut patch studies, a well-organized and insightful look at the "Social Consequences of Food Allergy," and a recent settlement for Lesley University students in Cambridge, MA, drawing attention to the need for allergen-free food options in college dining halls.

Most notably, I had the chance to attend Dr. Kari Nadeau's recent talk in San Francisco, "Finding a Cure for Food Allergies."  There, I was first touched by a personal testimonial from a family who is successfully desensitizing their two young sons to multiple nut allergies, under the guidance of Dr. Nadeau at Stanford University.

Dr. Nadeau fully impressed me with her current and vast knowledge about food allergy research.  What shallow understanding I took away from her talk would possibly cause my university biology professors to hang their heads in shame.  It seemed that doing a bit of background research could've helped me here.  Nevertheless, I found her research insightful, creative, and promising.

Nadeau spoke about phase one of her trial to desensitize food allergic children and adults via microscopic amounts, and change the way the immune system processes allergens.  The ongoing debate between desensitizing by introducing minute amounts of allergen versus strict avoidance is hard to ignore.  The old theory was that by avoiding allergens, the allergic cells would die over time because they wouldn't be stimulated.  That seems to me a pretty simplistic explanation that may only apply to the select group who actually eventually "grow out" of their allergies; as we know, not everyone does.

Nadeau seems to be proving the newer theory of desensitization right.  The key to her success is to introduce the allergens beginning with miniscule amounts (100 micrograms, where 1 microgram = 1/1,000,000 of a gram), and to administer subsequent exposures slowly and methodically.  She warned that trying to slowly introduce an allergen to a food allergic person at home can not only be dangerous, it can actually increase a person's sensitivities to that food.

In the past, desensitizing someone for, let's say a peanut allergy took roughly two years.  For someone like Tristan with multiple allergies including peanuts, dairy, egg, and tree nuts (we avoid all tree nuts), we could expect a desensitizing process for him would take at least 20 years.  But with Dr. Nadeau's new experimental methods, children and adults with multiple food allergies are currently in food therapy with simultaneous multiple foods, making a cure for multiple food allergies much more attainable and for someone like Tristan, much more real.

In Nadeau's eyes, the big question is how sustainable is the desensitization?  The key to sustaining desensitization is maintenance doses--once desensitized, getting to 4 g per day of each food for a certain amount of time.  She referenced a milk allergy study in Italy where patients who had milk daily were still desensitized over 20 years (not sure about this exact stat), and patients who had just had milk haphazardly had only a 50% success rate.  The goal is to understand how much and how long a patient would need to have the food to stay desensitized.  For a first hand look at life with maintenance doses, check out the Shkedim* blog.

In general, Dr. Nadeau says, the best preventative medicine for allergies is a healthy diet, including non-processed and organic foods.  She also believes in the importance of probiotics and maintaining a healthy level of vitamin D to decrease the likelihood of allergies.  If you're from San Francisco, aka "Fog City," your doctor may have recommended supplementing your baby's diet of breastmilk with vitamin D within the first year of life.  This seemed to be a newer recommendation, as I only got it with Addison (no food allergies) and not with the boys (multiple food allergies).  Recent research also indicates that smoking exposure is also associated with allergies and asthma.

Admittedly, hearing from Dr. Nadeau about phase 1 of her research has got even me filled with hope about an allergy-free future, sometime in Tristan's lifetime.  Dr. Nadeau is now in fundraising stages for phase 2 of her study.  To get more information about Kari Nadeau and the Stanford Alliance for Food Allergy Research, visit their website.

January 22, 2013

Mushroom Kale Strata - dairy-free, egg-free

I love food but I am far from being a foodie.  There is just so much I don't know out there.  Take a strata, for example.  My friend Vivian was preparing this for a camping trip last year.  (Talk about your foodies!!)  My only other reference to a strata was from Caffe Strada (not even the same word, I know) from my college days at Cal and I was absolutely sure Viv wasn't planning on serving one of these for breakfast.

The strata that Viv made was a savory bready casserole filled with sausage, beaten eggs and milk, and cheese.  I normally avoid all meat, dairy, and try my best to limit my eggs but I just had to try this dish because I was curious about what a strata is, it smelled terrific, and Viv is a fantastic cook.   The custardy bread was delicious and rich (I picked around the meat).  This definitely got me wondering if something like this existed in a dairy-free, egg-free form.

And, of course, it did!

Vegan strata recipes are all over the internet.  Internet, how I love thee!
My latest strata was drier on top but the bread below was more pudding-like.
I like the contrast!

I chose a few different recipes and tinkered with liquid proportions and add-ins.  In the end, the way I preferred my strata called for way more liquid in the custard than almost all other vegan strata recipes I saw.  Below is my recipe adapted from the great Terry Hope Romero and Isa Chandra Moskowitz, trailblazers in the modern vegan cooking world.  Seriously, if you have not checked out any of Isa's recipe books, you are missing out on true genius.  Whether you are vegan or not, everyone benefits from adding more plants in your life, and Isa's recipes can do this in a creative and surprisingly not-too-complicated way.
My first strata attempt was tasty but I didn't feel like the moisture
from the custard penetrated the bread cubes enough.  Back to the kitchen!

There are endless ways to make a strata.  Try this but definitely feel free to play with the veggies, spices, and other add-ins to your own liking.  The most important part for me was to make sure the custard consistency was not too thick or else the bread cubes wouldn't be soft and pudding-like after baking.

Mushroom Kale Strata - dairy-free; can be made wheat-free, nut-free, animal-free, but it will definitely contain soy.
Adapted from Terry Hope Romero and Isa Chandra Moskowitz's recipe in their cookbook Veganomicon.

1 Tbsp oil
1 cup red onion, sliced and further cut into thirds
5 cloves garlic, minced
8 ounces of mushrooms, cleaned and sliced
Leaves of 5 stems of kale, torn into bite-sized pieces
1/2 tsp salt
2 tsp dried thyme
1 tsp dried oregano
1/2 tsp dried sage
3 Tbsps sundried tomatoes, chopped
8 cups of crusty safe bread (some sort of baguette is ideal) cut into 1-inch cubes

For the custard:
14 oz package of firm tofu
1 1/2 cup of safe milk substitute (such as plain-flavored soy, almond, flax, or rice milks or full-fat canned coconut milk)
1Tbsp lemon juice
2 Tbsp cornstarch
2 Tbsps nutritional yeast
1/4 tsp garlic powder
1/8 tsp turmeric
1 tsp salt
Pepper to taste

  1. Heat oil in wok or large pan.  Saute onions until they begin to turn translucent.  Then add garlic and cook an additional few minutes.
  2. Add mushrooms to the pan and cook for 5 minutes.
  3. Then add kale, salt, thyme, oregano, and sage.  Cook for an additional 2 minutes.  Then turn off stove.
  4. Add bread cubes and sundried tomatoes to the pan and toss with the sautéed vegetables so that ingredients are evenly dispersed.  Scoop this mixture into a 13"x9" rectangular plan or 11"x7" oblong Corningware dish.
  5. For the custard, combine all ingredients into a large bowl.  Use a hand mixer or immersion blender to blend thoroughly.
  6. Pour custard mixture over the bread cubes.  Gently mix to coat.
  7. Bake in preheated 350 degree over for about 50-60 minutes until strata appears dry and golden.

This is a good recipe for making ahead of time.  You could cube the bread ahead of time and prepare and refrigerate the custard for a day before you need to assemble it.  You might even try to leave the sliced mushrooms or kale raw before baking.  The next time I try this I may double the custard recipe to increase the pudding-like consistency.  I love me some pudding, savory or not!

January 14, 2013

Callan's peanut challenge

My first time buying peanut butter in nearly 8 years.

Last week I took Callan in for his first ever peanut challenge.  Our allergist suggested that chances were good that Callan is not allergic to peanuts after evaluating his having no reaction to a skin test from December and his most recent blood test IgE results.  (The skin test was conducted right before his and Ryken's baked milk challenge.)  I had been operating under the assumption that Callan had peanut and tree nut allergies based on IgE blood tests from 2010 and 2011 with numbers pointing to a moderate allergy to peanuts (2.5 KU/L) and low or moderate level allergies to almost all tree nuts.

I had gotten comfortable with having my kids get tested via blood.  I am a numbers kind of a gal so I appreciate having concrete information and being able to compare numbers from year to year.  IgE scores also get categorized into severity levels and this made it a little easier to talk to people about the gravity of my kids' food allergies.  With the skin test, reactions are measured by (W) wheal size (that bump that develops) and (E) erythema or inflammation/redness that you can see developing under the skin.  It's hard for me to recall how one reaction looks from one year to another.  So for me it is nice to have these neat reports with blood IgE numbers and a key for reading the level of severity of the reaction, reports that I can easily pull up in our online records. 
On the left: Callan was scratched with peanuts and various
tree nuts in areas 1 through 7.  He did not have reactions. 
Upper left is the control histamine while the wheal
on the right is for baked milk.

So last month's skin testing showed a discrepancy between what the blood test and skin test each suggested.  Our allergist explained that each of the tests can help predict whether a person has an allergy but neither is 100 percent accurate all the time.  (A double blind placebo-controlled food challenge is the best way to determine a food allergy...but you don't want to dive into those until you're confident there will be no reaction!) So it is often good to have information from both types of tests to confirm or challenge the high chance of an allergy. There is a new method for evaluating a peanut allergy, the uKnow Peanut molecular test, which is gaining more buzz as a more accurate means of determining a true peanut allergy.  (Apparently those with birch or ragweed pollen allergies may test positive for peanuts!)  I haven't checked out the uKnow Peanut test but it sounds promising albeit expensive.

When the IgE values are higher, there is a greater chance that an allergic reaction will occur.  According to research, the IgE of different foods has varying predictive value for allergic reactions and because of this, you cannot read the IgE results in the same way.  For example, for eggs, a IgE value is 7 KU/L or greater is 95 percent predictive of an allergic reaction.  For peanuts, 100 percent of individuals with IgE blood test result of 14 KU/L and above would react to peanuts in a food challenge.  Individuals with a peanut IgE of 1KU/L have roughly a 50 percent chance of reacting in a food challenge.

So there is definitely a chance that there might not be a true allergy if you are testing at IgE levels that are lower than these highly-predictive, minimum values.  This was probably the case with Callan.

The Challenge
This was the first food challenge I had ever sat through.  Veteran food-allergy moms advised me to bring entertainment (paper, markers, books, and DVD player and videos were popular with my son) and snacks for after the food challenge when we would still be required to stay under a nurse's care for 2 hours for monitoring.

The food challenge was scheduled for 8:30am.  Challenges are conducted first thing in the morning and patients cannot eat beforehand.  This helps to ensure that (1) patients are hungry enough to eat the challenge food, (2) nothing has been eaten earlier in the day that might cause its own allergic reaction and confuse the results, and (3) it keeps the stomach empty thereby lowering the chance of asphyxiation in case the food challenge induces vomiting.

I brought in the product to be used in our challenge, a jar of peanut butter.  The allergist double-checked the brand to make sure it was not made in a facility that also processes tree nuts as that could muddle the results in case there was an allergic reaction to the peanut butter.  I haven't thought of this!  Thankfully our Skippy brand was given the green light.  However, the allergist mentioned that Planters' nut butters have possible cross-contamination issues.

Callan was given peanut butter on a pretzel stick, also provided by me and not new to his diet.  He was given increasing amounts of peanut butter every 10 minutes: 1/8 teaspoon, 1/4 teaspoon, 1/2 teaspoon, 1 teaspoon, 2 teaspoons, and finally 1 tablespoon.

At first Callan was reluctant to eat, scared that there might be a reaction that necessitated medication.  After some reassurance from me he cautiously took his first lick on peanut butter.  It was curious but not too foreign since sunflower seed butter was a familiar taste already.  After a minute of no itchiness and no rash, I could see Callan's body relax.  His mouth widened into a big smile and declared that he really liked peanut butter!  The rest of the challenge went just fine -- no reaction whatsoever.  Callan had passed the peanut challenge!

A relaxed Callan made some cards for preschool friends
while we waited out the post-eating observation period.

We had started the challenge a little after 8:30am.  By the time the six quantities of peanut butter were consumed and the 10-minute wait periods had expired, it was about 10am.  We had to stay in the challenge room until 12pm to make sure no delayed reaction set in (and none did).  These two hours were probably the hardest because we just stayed in the room.  We were given a choice to walk about the allergy office's hallways to stretch but besides that we were not allowed to leave.  We ate snacks, drew pictures, and then I finally busted out the DVD player to pass the time.

We met with the allergist after the 2-hour wait period who congratulated Callan on passing.  She advised me to give Callan a peanut product at least twice a week in order to keep peanuts in his system.  She said that research has shown that individuals with siblings with peanut allergies do have a higher chance of developing the allergy at some point.  Keeping up with exposure to peanuts can help protect Callan from (re)developing sensitivities down the road.

I was worried about how Ryken was accept the reality that his brother was not allergic to peanuts while he is still very much allergic.  For the days leading up to the food challenge, Ryken had been telling his adoring little brother, "If you can eat peanuts, I'll be allergic to you!!"  Words like these offered little encouragement to Callan and, not surprising, he did not want to take the peanut challenge.  The morning of the challenge I took Ryken aside for a talk.  I looked him right in the eyes and told him that, while Callan would be under a doctor's care and that his skin tests showed he had good chance of not being allergic to peanuts, a food challenge still was a little dangerous.  I needed him to hope for the best for Callan and give him confidence to take this test.  I promised Ryken that I am always looking out for both of my boys' safety -- Callan's at his food challenge and Ryken's if Callan should pass and need to eat peanuts to protect him.  Ryken looked at me and clearly understood.  He got into big brother mode and has been positive since finding out that Callan passed.

So now my newest task is figuring out when to give Callan peanuts (I'm sticking with peanut butter) and how to ensure that his peanut-allergic brother remains safe.  I might have them use separate toothpastes and designate one special "peanut butter spoon" to always use for Callan to reduce the chance of accidental contact.  There are some details to work out but I am more than happy to have this problem!

January 7, 2013

Chewy Vegan Snickerdoodles--egg-free, dairy-free

Snickerdoodles are such a fond remnant of childhood.  I rediscovered them on our Sacramento trip on the Polar Express ride, as they served hot cocoa and snickerdoodles on board as a holiday treat for all of the passengers.  Since the boys couldn't partake in the treats because of their food allergies, I was immediately determined to bake my own version.  They were the perfect conclusion to our Christmas Eve dinner, and consequently served double duty as a delicious snack for Santa, alongside some baby carrots based on Tristan's insistence that Santa needed to eat a bit healthier (not going to vouch for that pairing).

When searching for allergy-friendly recipes, I usually search the Web for a top-rated recipe, and see if it's simple enough to try a few substitutions to make it allergy-safe for my kids (egg, dairy, nut, and shellfish free).  Since this snickerdoodle recipe has only 9 ingredients, it was easy to modify.  And because it's a chewy cookie, I didn't have a problem with a crumbly texture as with some baked goods when eggs are omitted.

I replaced the eggs with Ener-G Egg Replacer, and the butter with Earth Balance.  To make it soy-free as well, you may use soy-free Earth Balance.  I thought I had enough cream of tartar for the recipe, but because I only had half of what the recipe called for, I added double the baking soda.  I haven't had time to try it again with the right amount of baking soda, but plan to.

I do hope that Snickerdoodles become one of your children's favorites as they did mine.

Chewy Vegan Snickerdoodles--No egg, dairy, or nuts (can be made soy-free), adapted from Soft Snickerdoodles Cookies

1 cup Earth Balance (regular or soy-free)

1 1/2 cups sugar

1 tablespoon Ener-G Egg Replacer plus 4 tablespoons warm water, whisked together

2 3/4 cups flour

2 teaspoons cream of tartar

1 teaspoon baking soda

1/4 teaspoon salt

3 tablespoons sugar

3 teaspoons cinnamon

1.   Preheat oven to 350 degrees F

2.  Mix Earth Balance, sugar, and Ener-G and water mixture together.

3.  Combine flour, cream of tartar, baking soda, and salt in another bowl.

4.  Stir the dry ingredients into the Earth Balance mixture.

5.  Chill the dough and the baking sheets in the refrigerator for about 15 minutes.

6.  While the dough and sheets are chilling, mix the sugar and cinnamon in a small bowl.

7.  Roll the dough into one inch balls, then coat with the cinnamon sugar mixture.

8.  Place on the chilled baking sheet lined with parchment, and bake for 10 minutes.

After about 10 minutes, the cookies may not seem done, but if you give them a couple of minutes to cool on the hot baking sheets before moving them to the cooling racks, they will come out perfectly.  Try not to leave them in the oven longer than 12 minutes.  They will be nice and chewy while hot, but will harden too much after they have completely cooled.