This post is a long time in the making. In fact, while typing the title of this article an insurmountable amount of emotion has swelled up inside of me. It is quite frankly unbelievable.
When our daughter was just barely a year old, she experienced a relatively violent reaction to a peanut butter cereal during a church service. Or to be even more clear, just by putting that first piece in her mouth (not chewing or swallowing) she experienced that reaction. A friend commented that perhaps she was allergic to peanuts. I entertained the idea and even made an appointment with an allergist, but the thought drifted to the back of my mind thinking that this must have been a fluke.
A few weeks later (while waiting for that first appointment), she had another alarming reaction to a kiss I had planted on her cheek – just 45 minutes after I ate a handful of peanuts.
We knew it was not just a fluke this time.
She was tested for peanut and tree nut allergies at a mere 1-year old.
It was positive.
More than positive, in fact.
Her allergy was so severe that her numbers were beyond the measurable, quantitative scale. All they could tell us was it was higher than their measurable limit.
A new life ensued. A life of difficulty. A life of worry. A life of restriction. A life with a massive amount of barriers. A life of fear.
If you are a parent of a child with a deadly allergy, you know what I mean.
Everyday, you wake up not knowing if this is your child’s last day on earth…
As your child grows and wants to become an individual and experience life, you.just.don’t.know.how.to.let.that.happen.
You just don’t…
No matter what non-allergy families think, it is a hard life. It’s a hard life for the parents, but especially the child.
Friends, we are not talking about stomach discomfort, not a rash, nor a little bit of swelling, but we are talking about this person’s throat closing and within a few minutes and suffocating to death often before anyone knows what to do – or often before anyone knows what is going on. There are mere moments to do something of value to save this child’s life. This is a human being we are talking about. This is real. This is deadly. This is tragic.
Christmastime was awful.
Birthdays were awful.
Halloween was awful.
Even Thanksgiving was hard.
Vacations and travel were a nightmare.
School outside of home is near impossible.
Camping, hiking, outdoor-anything not within 15-minutes of a hospital was impossible.
You don’t realize all of the day-to-day comings, goings, events, places, gatherings, meals, parties, public parks, events and celebrations that are a nerve-wracking nightmare.
For a few examples, consider borrowing books from the library. It’s a game of Russian Roulette as you scrub them clean with clorox wipes. That seat in the movie theater (yes – a peanut-allergy acquaintance was ushered out on a stretcher in that exact situation) that might have some remaining peanut proteins from the last person in the chair, that seat on a ride at the amusement park. Especially the park picnic tables were highly off limits (think the awesome and yummy PB&J sandwich standard). I carried table cloths in my diaper bag to cover public places to sit and eat. These are situations you have probably never thought about as a parent living out a “normal” life.
I have hated reading stories of sweet children suddenly gone with split-second misjudgment or without thorough investigation of the food before it hit their mouth – both often because the defenses were down after not having a reaction in the last year or more. Those stories have broken our hearts time and time again, many happening at places from our list above.
Unless you have dealt with this in your own family, you probably don’t know what it is like as a parent in this situation. How do you let your child live life and live?
Parents of food-allergy kids know exactly what we are talking about.
That’s why when we heard about a new and innovative food allergy treatment called Oral ImmunoTherapy (OIT) we were curious as a possible glimmer of hope crept into our minds. But what was this OIT spoken of?
In a nutshell, it is an oral therapy that trains the body to accept and not react to the deadly allergen by introducing it in microscopic amounts and slowly increasing in quantity until the patient is successfully consuming the allergen on a regular basis (everyday) with no issues; eventually the body learns to adapt and accept the allergen.
That is a very brief introduction to it. And if you read that as an allergy-parent, yes, your child is eating their poison.
We had heard about seemingly wacko treatments in the past. I won’t go into the details here, but in one workshop we attended the presenter asked, “You do have an EpiPen just in case the child has a reaction? We can’t administer it but you can.” Needless to say after hearing of “treatments like that” in the past our defenses were high on a “new approach.”
So needless to say, when we first heard about this, our blood pressure rose, our heart beat faster and the stress-o-meter burst out of it’s shell. It was basically a response of, “You want to cure my daughter by feeding her her poison?”
But we went to the seminar to find out more. After it was explained, it actually made some sense.
This is a relatively new treatment that is becoming very popular very quickly because of the high success rate. When we started almost two years ago, she was patient #36 of our doctor – and he at the time was one of only five doctors nationwide that were doing this innovative treatment. The success rate nationwide has been around 85%; her own doctor’s was around 97%. He treated patients from all over the world (even as far as Australia) moving here temporarily for treatment. The reason we share that is because we’re amazed that we only live five minutes up the road!
While at the seminar, they played a video to help sum up the treatment (he was very careful to state this was not to make fun of the allergy but to make a point) from The Princess Bride; you know where Vizzini and Westley are battling the wits and Westley pulls out the poison in the cup, only to find out that both cups had the poison and Westley had been spending a long while building an immunity to it. Well, it’s much of the same idea and there is no other explanation that is more simple or precise to share than this.
Honestly, the decision to do this treatment was a plaguing decision. We discussed it for a while, talked with her for a long while, prayed and ultimately decided that this was something we were all willing to give a try. Worst case, if it didn’t work we would not be in any different of a position than we were then and had been for the last 10 years.
We thought that this was a real opportunity for a real cure. Something neither her dad nor I thought possible.
We thought that we would live every day of the rest of our lives in fear, not knowing when that day would come when she had an accidental exposure, always expecting that phone call whether in her youth or as an adult, that the moment we dreaded had finally come. So why not give this a try under the protection and direction of a trained allergy specialist/doctor? If something goes wrong, we have the doctor’s help under the doctor’s care.
And, if it did work…then life would be dramatically different!
Well, friends, just two years later, her treatment for peanuts, almonds, cashews and hazelnuts has been completed. She also naturally gained an immunity to pecans, walnuts, brazil nuts and macadamia nuts during the process (which is apparently common – cure one tree nut with the result of curing many).
She started with peanuts solely as they were her highest allergen. The treatment was 6 months long and she experienced sheer success with a couple of very minor skin reactions. She graduated January 2015 from peanuts and life became so much more free, but at the same time difficult because she now had to eat peanuts and products with peanuts (to maintain her immunity) but avoid foods with tree nuts.
This was a little tough, but knowing that peanuts were behind her was an amazing feeling. But life wasn’t quite yet where we hoped it would be.
In June of 2015, she started treatment for her remaining deadly allergies. Her numbers had dropped significantly since graduating from peanuts, but still too high to be safe and still quite deadly.
So we began round #2 and treated the remaining tree nuts at the same time. Another 6 months of treatment..this time with no reactions at all! She graduated in January of 2016 completely food allergy free!
We celebrated with her trying Thai food, Mongolian food, Chinese food, ice cream shops, bakeries and more.
So how has life been the past 5 months completely food allergy free?
I had dreamed about these days, these months and these years thinking about how incredibly exciting, free and fun life would become. And it has been that! In fact, it’s been a 5 months of firsts – first unrestricted birthday parties, attending birthday parties without restriction, road trips in desolate places, foodie firsts, life firsts and so much more. It’s crazy to me to shop without reading a single label! Utterly amazing.
She’s already signed up for her first summer camp – something we could not safely let her do, especially after reading the incredibly sad story of a girl with deadly peanut-allergy, daughter of a doctor, who attended a summer camp with both of her parents present as counselors, to only accidentally ingest a food containing peanut butter (I think it was Rice Krispie Treats made with peanut butter that they thought was just the plain ol’ stuff) go into anaphylactic shock and not make it to the hospital in time to die en route to the closest medical facility. Heart-breaking! If they couldn’t protect her (being a doctor and being present), I could not just as a parent. But now, no more worries! She’s free to go and enjoy life!
What’s funny is that we thought life would be a big ball of exciting each and every day, but in all reality, life is just “normal” now. It’s not the old exciting in the negative way like it use to be, it’s just normal – as normal as life can get!
Praise the Lord!
And OIT has grown in massive popularity over the past year. We understand that it is no longer just the five doctors nationwide but many more with thousands of kids now undergoing treatments all over the nation!
Think about how revolutionary this new life is with the introduction of this life-saving treatment? Food allergies are a modern epidemic and it is amazing to watch positive changes!
Now, OIT can be done for a vast number of food allergies for not only peanuts and tree nuts, but milk, eggs, wheat, soy, etc.! The process is the same and the process is amazing!
Our daughter has shared some brief moments of her treatments on her site Allergies to Freedom, and she may share more as time goes on. But for now, she’s thoroughly enjoying her new-found free and normal life!