“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.

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Passing the Torch

Okay. I’m gonna say it…  What if something happens to me?

Everyday in the news, and sometimes in our own lives, we are reminded that our time here is finite.  Heaven forbid, if something did happen to me, who would take care of my babies?  Would they know what to do?  I try to teach as much as I can, but at our house, and I’m sure many others, there are things that “Mom handles” that the rest of the family may not know much about.

If I am not here, will they know what brands are safe?  Where to find help?  What to look out for?  How to make my daughter’s favorite dinner the way I make it?

Golly jeepers it’s hard (and a tad depressing!) to write this post, but I want it to be here.  Not because I know or believe that something will happen to me, but if it does, like those sweet romantic movies where a letter is written sometimes years in advance, filled with love and great forethought, my blog will be here.  And hopefully help.  ❤

 

Skoop: Super Simple Superfood.

Skoop_Logo_300

I’m sharing this with you all, not because I’m a great salesperson (ha!), but because I’ve found this “tiny scoop of awesome” that is “free of all of the ‘top 10 allergens’, and is not blended in a facility that packages nuts“.  Hooray!  I was originally searching for something to put in smoothies for the kids to add a punch of nutrition to their already limited diet.  Skoop is *not*, however, currently recommended for children under 75 pounds (or pregnant or nursing women).  So I tried it just for me.  And I LOVE it! I love the way I feel energized by it. I love knowing that I have done something good for myself by nourishing my body with super good stuff.  Seriously.  Vegetables, greens, fruits, fiber, omega 3s, probiotics, and antioxidants all in one scoop.  I mix it in my mid-morning smoothie with half a banana and 8 ounces of soymilk.  I find that I want less coffee, feel more energized, and have even used it pre-race for 13.1 miles of super.  Anyhow, it’s gluten free, caffeine free, non-GMO, organic, and only 50 calories per scoop.

 That is, in a nut-free nutshell, what I love about Skoop.  To find out more, visit emily.healthyskoop.com

 

To Ad or Not to Ad?

This is a question posed to my fellow bloggers.  I am just a baby in the blogosphere, so I don’t get much traffic, but I have to wonder if having ads would be worthwhile.   I know some of you have ads on your sites.  In your opinion, is it worth it?  I have, of course, googled discussions on the topic, but I would love to hear from you about your experience.  

Thanks!

Random Reminders (for my kids)

Always, always, carry your Epi-pen, inhaler, and Benadryl with you. As in, keep it *ON* you.

When in doubt, go without.

Wash your hands before you eat, every time. Besides germs, you never know if you have touched something with milk, egg, or peanut residue on it.

Make sure your dishes are clean.  If your plate or silverware still has unidentifiable goobers stuck to it from the last meal it held, in addition to being totally gross, it could also have  something you can’t have on it.   Get a new one for sure.  (ick)  Oh, and steer clear of anything made in cast iron.  Those things are never (by definition) washed with soap and water and can hold all sorts of trouble in their “seasoning”.

If the person preparing your food speaks English as a second language, eat somewhere else.  You have to feel comfortable that they truly understand what is dangerous for you.

If friends aren’t willing to make compromises for your safety, they’re not good friends.  If a friend is willing to learn about and help you manage your food allergies, be grateful and cherish them!  That is a good friend.

Never use a shared toaster. If you have to, use a toaster oven and line the rack or pan with foil to protect your food from cross-contamination.

Remember, labels can be deceiving.  Test your label reading knowledge at http://www.allergyfreetable.com/food-allergies-label-quiz.php 

Always carry spare safe snacks with you.  You don’t want to get stuck away from home and starving without something safe to eat, or worse, make a bad choice because of it.

Disclaimer

Read the label.  Every time!  Then, even if the label appears to be free of your allergens, check the company’s website and/or call them to rule out cross-contamination.  Every time!  The intent of this website is not to provide nutritional or medical advice.  It is up to you to decide what’s best for you and your family.  Also, I am not one to adhere to strictly organic, non-GMO, whole, clean, paleo, vegan, etc.  Granted, they are good for you!  In our home, we do what we can to keep things easy and as close to normal as possible.  Lastly, I would love for you to enjoy and share my blog.  Please remember that all content on this blog, created by me, belongs to me.  (copyright implied here)  Likewise, all content on this blog borrowed from others, belongs to them and will be credited as such.  Thank you!

Woo-hoo I have a blog!

Thanks for visiting my page!  No, really.  Thanks!!!!  Life is busy, so I’m honored you’d stop by.

I’ve decided to create this blog to share milk, egg, and peanut-free recipes and tips for eating healthy, and most importantly, safely when navigating the world of serious food allergies.  I have two children who are BOTH severely allergic to milk, eggs, and peanuts.  What I post here will be about our day-to-day recipes, products, and challenges.   I thought about creating a cookbook for them when they leave home so they can take with them all of the great family meals we’ve created over the years (that they actually liked!) as well as favorite products, tips for eating out, reading labels, etc.  Someday I might.  (Stay tuned!)  But for now, wherever they are, as long as they have access to the internet, they’ll have this blog.  And you can use it too!