“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

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3 thoughts on ““Courage is Not the Absence of Fear”

  1. Hi. I came across this blog post today as we prepare for our first consult visit with Dr. Windom regarding our daughter’s peanut allergy. Thank you for sharing your experience. I hope both of your children are continuing to do well.

    • Yes, thank you, and I’m so sorry for the late reply. Somehow, I did not see this until now. I guess we’ve been busy OIT-ing! So far, so good over here. We’ve had only a few minor issues, including stomach ache and one episode of lower lip swelling that resolved on it’s own within 15 minutes. My daughter is one dose away from transition from egg powder to egg and my son is almost to a full cashew. Hope to hear you are doing well also! -Emily

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