“Courage is Not the Absence of Fear”

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” -Nelson Mandela.

I haven’t blogged in a while and I’m waaay overdue to share some of the awesome things that are happening in our allergy journey. We learned about a new type of allergy treatment, called OIT, or oral immunotherapy, from a Facebook allergy support group. OIT started out in clinical trials in some of the major research hospitals around the country, but is now being offered by a select few private practice doctors. I knew about the trials, and that many families have moved across the country to take part. What I did not know, is that we are lucky enough to have one of the private practice doctors offering OIT just a few hours from our home.

http://www.nytimes.com/2013/03/10/magazine/can-a-radical-new-treatment-save-children-with-severe-allergies.html?_r=0

Sarasota doctor gives peanuts to allergic patients to fight allergy

http://www.cbsnews.com/news/beating-peanut-allergies/

“Ring-ring.”  We called and made the consultation appointment and made the two hour drive to Sarasota to meet Dr. Windom and staff.  Since I have two littles with food allergies, we tackled one at a time. Starting with my son, we got fresh labs and skin testing done so the doctor would know where his allergies are “at” right now.  Then he encouraged us to “challenge” a few of them by coming into the office for food challenges.  First to baked milk, then baked egg.  What I didn’t know before is that, apparently, some children with milk and egg allergies can tolerate the baked form because the high heat and long duration of cooking can alter the protein just enough that the body accepts it.  Who knew?!  He challenged baked milk and egg on separate visits, and as I nervously sat and watched, nothing happened!  All these years, we’ve been missing out on so many things he could tolerate.  Since then, he has challenged milk and egg in a pancake (cooked with lower time and temp than baked), and even whole milk, and passed. We went back another day and challenged peanuts.  When he was a picky toddler, with a negative blood test for peanut allergy, I gave him a tiny taste of peanut butter, and immediately, he threw up.   I then watched his eyes, ears, mouth, and nose turn red and start to swell.  Off to the ER we went.  This year, on the day of his in-office peanut challenge, I watched him slowly work his way up to multiple peanuts… and NOTHING HAPPENED.   As it turns out, he hates them, but nothing happened! (I’m pretty sure that was a surprise even to the doctor.)  I’m so proud of my son for his bravery and his reward has been great.  We still have a ways to go for him: a challenge to scrambled eggs, cashews, and sesame, but let me tell you, even just a few things crossed off the list opened a huge door of new possibilities.  He looooves Chic-fil-A chicken nuggets and Hershey bars!
Now for my daughter.  Her allergy tests came back higher than her brother’s, and her extreme fear of needles delayed her initial lab tests from getting done- which is also reason #1 that she needs OIT- the medicine that could save her life… is at the end of a needle that she must give herself.

Nuff said.
Anyhow, she passed baked milk, barely.  Two full muffins during the challenge caused her some delayed, but very painful, tummy troubles later that day. Her at home daily “dose” muffin caused a part of her upper lip to swell on day 3. We called the office and down-dosed to a half a muffin and I’m happy to report that she’s been doing fine with that for almost a month now.  In the beginning, her tongue would get itchy after she ate her daily muffin, but that has stopped.  A sign of progress!
She did not pass her baked egg challenge.  Again, her tummy, but much more severe and long lasting. We hit our first road block, so tomorrow, we start OIT for egg.

The day we left the office after failing her egg challenge, my daughter said to me, “I’m still thankful to God for today, because now I know where I stand and now we can start OIT.”

Mind you, just a few minutes prior, she was in tears over how bad her belly hurt.  Because her peanut test results were off the charts, after egg we will move on to peanut OIT.  She will have a long journey and the size of the mountain she has to climb parallels Mount Everest.  Her courage and strength astounds me.  I could not be more proud of the strong young woman that she is growing into, and I am confident that she will succeed.

There are many that feel OIT is controversial and too risky.  If you are an allergy parent, consider at least seeking a second opinion (and of course DO NOT TRY THIS AT HOME).  We saw the same allergist for 11 years.  How many of those years could we have been free to eat things that they were no longer allergic to because we were not offered a food challenge or informed of the possibility of tolerating baked items?  The blood and skin test results are not black and white.  There could be an open door in your future that you have yet to walk through.

With the Viaskin peanut patch set to be FDA approved shortly, and the Aimmune peanut pill in clinical trials now, desensitization as a method of treatment is not going to go away.  I will continue to remain hopeful that this will lead us on the path to a cure.

horse fav

Cruisin’ … ♪ ♫

disneycruise

So we did it!!! We survived a Disney cruise with multiple severe food allergies, had a blast, wish we had done it sooner, and plan to do it again! I wanted to be sure and post our experience because if it wasn’t for others sharing their success stories, I wouldn’t have found the courage to attempt it. My two are milk/egg/peanut and milk/egg/tree nut. We took the Disney Dream. The first day was a little bumpy. Our servers thick accent and the fact that he threw in “gluten” when he was reading our allergy sheet had us a little nervous. But he got the head server who read the same sheet and they had it right. The head server explained they take our order and the allergy sheet to the chef to make sure it can be done and then the meals are prepared in a separate area of the galley. It took a little longer the first night to get their meals, but then after dinner we pre-ordered breakfast lunch and dinner for the following day every day thereafter. They had steak and french fries with steamed vegetables, chicken tenders, hotdogs, hamburgers, pasta with olive oil, and for breakfast, they had pancakes, bacon, sausage, prepackaged dry cereals and fruit. We did pack a bag of safe snacks for during the day because it was difficult to find safe snacks on the ship without ordering room service which took a bit longer to go through the allergy process. The days that we were on Castaway Cay, their pre ordered lunch was delivered from the ship to a specified location on the island. The day that we were on Nassau, we chose not to try to find safe food at Atlantis, but just brought safe prepackaged snacks for them to eat because fresh food or unsealed food is not allowed to be brought on or off the island. For those that are severely contact allergic to dairy, I would add a cautionary note that there is unlimited soft serve ice cream on the ship and Castaway Cay and occasionally you would run into a puddle of ice cream or someone breaking the rules with ice cream in the hot tub etc. It was nice to meet a few other allergy families while on the ship and I thought it would be cool if we had a pre-planned get together. Future cruise idea I guess. Also, I did notice they had enjoy life cookies in the kids play area. The epinephrine/medication form you have to fill out to leave it with the staff in the play area mentions it should have the original label which we did not bring, however the staff said we could just write their name on the bag. Castaway Cay has the Epi-pen sign on the health building near the gift shops, FYI, but of course bring your own. I think that’s everything! I hope you too can find the courage to go out and find adventure and not let food allergies hold you back!

My Lightning

baked milk challenge April 2015

When I was pregnant with my son, I worried about the possibility of my second child also having food allergies. My friend had said, “He won’t have allergies too. It would be like lightning striking in the same place twice.”
Well. He did. He has all of his sister’s allergies plus one more.
I recently found out about a doctor near us who provides private practice OIT, or oral immunotherapy. Oral immunotherapy is a process that slowly enables your body to develop a tolerance to an allergen, like allergy shots would for seasonal allergies. We’ve known it’s been around for some years now, but previously only at major research hospitals several states away. We visited this new allergist and left feeling optimistic. He wanted to challenge my son with baked milk and baked egg first, to see if he could tolerate it and then use the baked products for a while to hasten his tolerance to milk and egg, a form of modified OIT, if you will. From what I understand (and I am no expert!), the normal OIT process starts with just a speck of your allergen, say peanut flour, then you (carefully, methodically, and always under the supervision of a skilled physician!) increase the amount every week or two weeks over months, sometimes years. You graduate from peanut flour in liquid, to peanut flour in capsules, to…peanuts! Then you continue to eat your daily “maintenance” peanuts for life to avoid the allergy returning. He would still always have those allergies, and still always need to carry an Epi-pen, but his chance of reaction would be diminished while his freedom would greatly increase.
The day of his baked milk challenge, I was nervous, of course. We got up very early and made the 2 hour drive to the office. I felt good about it, and so did he, but we were all a bit worried that it could end poorly… like with an epinephrine shot and a trip to the hospital. If he was nervous, you wouldn’t have known it. He had two muffins to finish. First a small piece, then a bigger bite, then another. The process went on for about two hours, spacing each about 20-30 minutes apart. I kept trying to watch him without staring at him. Lol. At one point, he bent over to stretch, and I was all, “What’s the matter?! Does your stomach hurt?! Are you ok?!” Turns out he was just bored and stretching. Uneventful. That’s what it was. I’m still amazed. All this time, perhaps, he could have been having things with baked milk in them to help him outgrow his allergy. Of course, things have to baked at a certain temp for a certain duration to change the protein, so we still have to be careful. When I asked him if he was nervous, he said, “At first, but then once I realized it didn’t taste bad, I was fine.” Leave it to my son not to be worried that he has to eat something life-threatening, but that it might be “yucky”!
He is my lightning. He surprises me daily. He is brave, smart, strong, fast, thankful, helpful, and loving. Everything he does is intense… like lightning. 🙂

To the mom at the table across from ours: I’m sorry.

When I came across Romans 2:1 in my daily reading, I was reminded of our first, unbeknownst to me, encounter with food allergies.  Given all the recent disputes over food allergies in the media, I’m going to share.  Sometimes we have to be reminded to “turn the table” and consider the view from the other side.

Flashback to 10+ years ago:

Hubby and I are spending a romantic weekend at Disney World, having just found out we are pregnant with our first child.  All day, my mind had been filled daydreams of mommy-hood and I found myself observing all of the other mothers around me at work.  We are seated at a table at one of the fabulous Disney restaurants and are waiting on our server.

At the table across the aisle, a family of three arrived: Mom, Dad, and elementary-aged daughter. Dad sat down, but before Mom sat down, she took a white napkin from the table and daintily but thoroughly wiped down her daughter’s chair before she sat.

I’m ashamed to admit this, but I remember thinking something like “Ohhh-kay… that mother sure treats her daughter like a princess.”

The server came out, took our order and then turned to them. They asked to speak with the chef, something I had never seen done before at a restaurant. The chef came out to their table and they discussed how their daughter’s meal was to be prepared.

I thought, “Wow, this is a nice restaurant if they offer that kind of special attention.” and, “Seriously? She must be a really finicky eater.”  Insert that popular phrase we’ve all thought at some point = “I will never do that with my kids”.

Fast forward 2 years:

I sat my daughter in her high chair and handed her her first teething biscuit. Hours later, she is covered in hundreds of hives, rushed to the emergency room, and later diagnosed with multiple, severe food allergies.

In the years since that day, I have learned volumes about parenting a child with food allergies, including the one place we can vacation where I don’t have to cook because they are fabulous with food allergies- Disney World.

Romans 2:1 “…for in passing judgment on another you condemn yourself, because you, the judge, practice the very same things.”

So to you, AWESOME food allergy mom at the table across from ours: I’m sorry.

Back to School “Safe Snack List” for Teachers

Every year, I update this list of snacks that are safe for us and provide a copy to my kiddo’s teachers.  This year, I’m sharing it here too.  ***Remember, always be sure to do your own homework and ***always read every label to make sure these snacks are safe for you.

OK Candy
Smarties
Starburst
Skittles
Gimbal’s brand jelly beans
Dum-dums lollipops
Lifesavers, hard candy, gummies
Laffy Taffy (certain sizes only, read label)
Twizzlers (original strawberry)
Sour Patch Kids
Surf Sweets
Trolli gummy worms
Swedish Fish
Airheads
Saf-T-Pops
Peeps  (certain varieties only, read label)

OK Snacks/Treats
Any fruit or vegetable
Tostitos tortilla chips (plain)
Lays potato chips (plain or barbecue; if barbecue check for milk on label)
Pringles Original (plain)
Orville Redenbachers Naturals, “Simply Salted” microwave popcorn
Skinny Pop popcorn, original
Fritos (plain)
Rold Gold brand pretzels (plain)
Betty Crocker or Keebler Fruit Snacks or fruit rollups, Gushers
Keebler Graham Crackers
Teddy Grahams: chocolate, honey, or cinnamon
Oreo’s- original and double stuffed only
Marshmallows-Kraft or Publix brand
Enjoy Life brand chocolate chips, snack bars, or anything else (whole line is top 8 free)
Ice Pops (read label)
Tofutti vanilla or chocolate ice cream
Tofutti Cuties ice cream sandwiches
So Delicious vanilla, chocolate, chocolate obsession, cookie avalanche *soy* ice cream
So Delicious Minis *soy* (ice cream sandwiches)

Drinks
Juice, Gatorade, Powerade, soda, soymilk

OK Breakfast Foods
Cheerios (plain)
Chex (wheat, corn, or rice)
Cocoa Puffs
Rice Crispies, Cocoa Crispies
Pebbles (cocoa or fruity)
Apple Jacks
Fruit Loops
Cookie Crisp
Lucky Charms
Corn Pops
Cinnamon Toast Crunch
Frosted Mini Wheats
Pop Tarts (frosted strawberry or frosted brown sugar & cinnamon)

Pizza and Ice cream? No Problem.

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On more than one occasion, several in fact, we have been invited to birthday parties serving pizza and ice cream.  It’s pretty common party fare.  The first time this happened, I was a little overwhelmed with how to either A: create a milk, egg, and peanut free (and fabulous) version of these, or B:  convince my child that a safe alternative was just as good as what “everybody else” has.  Well, after many years of practice, here is what we do now.

For pizza, we use Pillsbury Original Crescent rolls for the crust.  Simply unroll the can and separate each triangle.  Viola-  pizza slices!  Then we spread a small amount of pizza sauce on each triangle.  We use Publix brand.  Now you could add your favorite dairy free cheese, such as Daiya, but my kids, having never had cheese, think replacements are just… weird.  Then, we apply 1-2 slices of pepperoni each.  We use Hormel or Oscar Meyer brand.  You could also add other toppings such as mushrooms, peppers, etc, but alas, we don’t like those either.  Bake according to crescent package directions.

For ice cream, see the recipe we use here.  In a pinch, we also love a few store bought dairy free brands, including So Delicious, and Tofutti.  Be careful to avoid flavors that may have your allergens, such as peanut butter varieties.

For cake, see the recipes we use here.  I make batches of cupcakes ahead of time, then freeze them without the icing on.  I also freeze cupcake-sized servings of icing in sandwich baggies.   When it’s time to leave for the party, I take the cupcake out of the freezer, place it in a storage container, snip the corner off a baggy of icing, add that to the container, and go.  If I won’t be at the party with them to pipe the icing on at the last minute, I’ll pipe it on before putting it in the container.  This method sometimes results in the sides of the container wearing most of the icing.  I’ve tried to stabilize it by jabbing toothpicks in before I put the lid on, but I haven’t perfected traveling with pre-iced cupcakes yet!

My Child Has Food Allergies?! -Starting Places

This post is for my kids, for those who care for them, and for all of you who are just getting started and feeling overwhelmed with providing safe alternatives for someone you love who has food allergies.

I’ve discovered a lot of resources in my 10 years as a food allergy Mom.  For those of you who are also milk, egg, and peanut allergic, if you have any to add- many thanks for sharing!

1.  Of course, of course, of course- you should see a doctor and learn from them all you can about how to care for your loved one with food allergies.  Then, I suggest exploring the many fabulous resources provided by national organizations such as FARE and Kids with Food Allergies.  If you haven’t yet viewed my Resources Page, please explore the bounty of great information found on the linked pages there.

2.  We are milk, egg, and peanut allergic.  Since vegan recipes avoid animal products like milk and eggs, for us, vegan resources would be a good place to start, but **be sure to avoid products that may contain nuts.  Some great vegan blogs I’ve found (and hope to add to) include:

bunnykitchen.com

vegan-heartland.com

Or how about this list of “main stream” goodies that are “accidentally vegan”: http://www.peta.org/living/food/top-accidentally-vegan-foods/

3.  Social media!  This year, I have discovered some awesome support groups on Facebook with Moms like me that share recipes and all sorts of great tips for living with food allergies.  They may or may not have the exact allergies you do, but again, it is a starting point.  Some of them are “closed” groups, so you will have to request membership from the admins.  Some examples you can search for on facebook are: “No Nuts Moms Group Support Group and Forum”, “Peanut/Tree Nut Allergy- Safe Food Finds“, “Deliciously Dairy Free”, “Multiple Food Allergies R Us”.   I also find tons of recipes that are a good fit for us or can be modified to meet our needs on Pinterest.  Here is a link to my “allergy friendly” board, where I “pin” things that I want to try later or even links I’ve created to my own recipes to share with others.  http://www.pinterest.com/emilyloganphoto/allergy-friendly/

You can also find others who “eat like you do” on freedible.com

4.  Snack Safely.  Their primary service is the publication of the Safe Snack Guide, a catolog of snacks free of specific allergens (currentlly peanuts, tree nuts, and eggs). They also partner with several manufacturers in compiling this list.  Tons of great information, including the Safe Snack Guide, can be found at http://snacksafely.com/

5.  Blogs like us! 🙂  I have been so happy to discover other people, blogging their hearts out right along with me, sharing their experiences and recipes with others in the same boat.  These bloggers avoid all or at least some of the same allergens we do.   Again- a great starting point.  And remember, like myself and many of these bloggers disclaim: always do your own homework.

http://www.mamacado.com/p/mama-food.html

http://ibakewithout.com/about-2/

http://www.amazingandatopic.com/p/introduction.html

http://speedbumpkitchen.com/

http://indulgingwithallergies.blogspot.com/

http://www.gratefulfoodie.com/about/

http://nut-freemom.blogspot.com/

http://theallergistmom.com/about/

http://foodallergybitch.blogspot.com/

http://monicasfoodallergytips.blogspot.com/

http://yesnobananas.wordpress.com/about/

http://trickandtreatsafetoeat.wordpress.com/

http://adventuresinallergies.wordpress.com/

http://allergenmenumom.com/about/

http://ohmahdeehness.wordpress.com/about-2/

http://www.foodallergybuzz.com/

http://whyriskit.wordpress.com/about/

http://pastaandbananas.com/about/

http://blog.thrivingwithfoodallergies.com/sample-page/

http://home.allergicchild.com/about-us/

http://momversusfoodallergy.com/about/

http://foodallergythingymabob.com/about/

http://www.mothernova.com/about-mothernova/

http://foodallergysleuth.blogspot.com/p/our-story.html

http://ellasurreau.wordpress.com/

http://mustfollowrecipes.blogspot.com/

http://trustthelabel.com/?q=about

Phew!  After jotting all those down, I can’t believe there are so many!  What a blessing!  If you have a food allergy blog that I haven’t mentioned here, especially for milk, egg, and/or peanut allergies, please share!  I would love to “meet” you.  Thank goodness for internet “connectivity”.  🙂