Overcoming a Life-Threatening Food Allergy with Oral Immunotherapy

I have started and deleted this post many times. I am at a loss for words, which is weird for me because when I’m telling stories or trying to explain complicated concepts to my three children, my introverted husband often says, “Too many words, Brittany.” But every time I try to verbalize our tremendous new life, post-Oral Immunotherapy graduation, my words fall short of the immense gratitude and relief we feel.

Because of Oral Immunotherapy (OIT), we have stopped running away from life and started running toward adventure. We have stopped carrying the heavy load of anxiety on our shoulders and become more spontaneous and lighthearted. I want anyone who loves someone with a food allergy to read this post and feel hope.

My oldest child, my only daughter, has a life-threatening allergy to peanuts. I have held her in my arms waiting for an ambulance to arrive as she gasped for breath. I’ve pretended to be calm while administering Benadryl when her eyes swelled shut and her fingers became fat sausages after she sat at what appeared to be a clean restaurant table.

Like each and every parent of a child with a life-threatening allergy, I have lived my life in a constant state of hyper-awareness since her diagnosis almost nine years ago.

Her life feels like it could slip through my fingers at any moment because of an accidental ingestion of a fraction of a peanut.

If I am vigilant and prepared for every possibility, I feel like I have control over her world. But this sweet daughter of mine is entering her last year of elementary school. As she proudly declared on her ninth birthday, “Mom, my childhood is already halfway over!”

As my daughter’s world continues to increase in size, my world feels more out of control. Or, at least it used to before OIT.

The truth is that sometimes an EpiPen is not enough.

Sometimes two EpiPens are not enough to stop anaphylaxis.

I have spent years living in terror.

So has my daughter. A lot of it is because of me. I know this. I wore my fear like armor. It was necessary for protection. Since she could talk, I have been teaching her to explain her allergy to anyone who offers her food. Before she could read, I was showing her how to read labels. I wanted to make sure she understood how to take care of her allergy one day when I was not around. When we moved to Europe, the first phrase I learned to say in Italian was, “My daughter has a severe allergy to peanuts.” I taught her to say it as well. Maybe this wasn’t the right thing to do, but again, I was trying to do everything I could to protect her.

When my daughter entered second grade, my husband left on a yearlong remote tour. My little girl who always had the possibility of getting sick from food was suddenly preoccupied with death. She was worried about her daddy, and she was worried about herself. She was worried about dying unexpectedly and was often convinced her heart had stopped beating. She had multiple anxiety attacks, and I took her to a therapist so she could talk about her fears in a productive way after my attempts seemed to make things worse.

At school, she was scared to go on the playground equipment or swings for fear that a kid had eaten peanuts at lunch and not washed his or her hands properly. She would not go to birthday parties or playdates or sleepovers unless I was there every second because she was afraid of accidentally eating something with peanuts. Eventually, she stopped eating the lunches I packed for her because I was not present in the lunchroom to assure her that there were no peanuts in the lunch that I. HAD. PACKED.

Her terror was more tangible every day.

She stopped touching carts in the grocery store. I got calls from school at least twice a week with requests to reassure my daughter that she was just fine and death was not looming in her immediate future.

Her food allergy was much bigger than just having to avoid a certain food. My daughter’s food allergy was making her want to avoid life.

There is no cure for food allergies … yet. But there is Oral Immunotherapy (OIT). I first heard about OIT when we were about a year into our food allergy journey in 2008. I saw a report on a nightly news program about a doctor in Colorado who was beginning a new treatment option for people afflicted with severe food allergies. It basically worked by feeding children who are allergic to foods minuscule amounts of their allergen and then increasing it ever so slowly over time. This retrains the immune system to not be as sensitive to the allergen. The patient is still allergic, but it takes a much higher amount of the allergen to produce a reaction.

I had mixed feeling about the report. First, I felt hope. Could this be something worth looking into for my daughter? Second, I felt fear. Paralyzing terror. Should I purposely feed my daughter a food that could cause her to react and possibly kill her? Fear won, and I sat on the knowledge of this treatment option for over seven years. Besides, the military had yet to move us close to Colorado and that was the only place this treatment was available at the time.

Finally seven years later, decided to face my own fears and look up Oral Immunotherapy. To my surprise, I found a Facebook group through a simple Google search called “OIT 101.”

I joined the group and saw over 10,000 members considering or actively involved in treating their child’s food allergies with OIT. Then I discovered the website that a group of parents from OIT 101 had put together that lists most doctors in America who participate in Oral Immunotherapy (www.oit101.org).

There are over 100 doctors now … OIT is much larger than one doctor in Colorado. I put in my zip code and held my breath. We had an allergist only 1.5 hours from our house who conducted peanut OIT.

I talked to my daughter and my husband, and they both wanted to meet with the doctor. I stalled for weeks because I was terrified. I finally called, and to my surprise, he had an opening the very next week! My fear was secretly making me hope that he had a yearlong wait list, but no such luck. It was just a consultation, but we met with our allergist. He did some tests, ordered some labs, and talked with us about his OIT protocol.

Oral Immunotherapy is not regulated by the Food and Drug Administration. Each doctor in private practice may use a slightly varied protocol with varied goals. Some doctors have the goal of allowing patients to freely eat their allergen. Our doctor prefers a protocol to help his patients become “bite proof.” This protects patients from accidental reactions in case they eat foods or touch surfaces that contain their allergen.

About a week later, our new allergist called with the results of my daughter’s blood work. Her component test showed she was severely allergic to all parts of a peanut. (I knew that.) He said her allergy is so severe that she is exactly the type of person who would benefit the most from OIT, and he suggested that we move forward with treatment.

Moving Forward

The night before our first appointment after I had all three of my children tucked in bed, and after my husband was sleeping next to me, I got out of bed, hid in our bathroom and cried. For hours. I was rocking back and forth, fetal position, full-on ugly crying.

This may seem crazy to anyone who hasn’t experienced the fear that comes along with a food allergy, but I know I am not alone.

I was afraid that I was going to kill my daughter the next day by allowing her to eat a peanut. It is irrational, and there is no instance of someone dying while in Oral Immunotherapy. She would be under close observation by our doctor (whom I have come to admire and respect so much) as well as his staff of excellent nurses.

But Oral Immunotherapy requires an emotional desensitization as well. Sometimes it is easier just to stick with the known rather than step into the murky waters of the unknown. What I knew was strict avoidance. Peanuts equaled death. We had lived in fear for so long. Allowing my daughter to have peanuts put into her body was a traumatic idea.

But two things kept me going:

1. We could stop at any moment. Just showing up for Day One didn’t mean we had to stay through to the end.

2. I wanted my daughter to be free of her worry and enjoy her childhood.

So, on July 26, 2016, my 9½-year-old daughter sat in a doctor’s office and ate her first purposeful tiny piece of peanut particle. Nothing happened! It was a glorious and uneventful day, and we were energized and excited about the future.

Since each doctor has a different protocol, I will just discuss ours in a general sense. We started with peanut flour diluted in juice somewhere close to the 1/10,000 of a peanut dilution. We stayed at each concentration for at least a week by taking our peanut doses at home before moving up a little bit at a time at our next appointment.

Our doctor works up to about 10 peanuts over the course of 20 office visits. We faithfully made the drive each week and had an uneventful journey. When we had reached two whole peanuts (amazing!), we experienced our first setback. My daughter began complaining of stomach aches that were so severe, they left her screaming and writhing in bed. I called our allergist’s on-call line and left a message at 6:30 a.m. He called me back about 2 minutes later with advice.

After some trial and error and lowering her dose, we both agreed her problem was not the peanut itself, but rather her anxiety. Now that she could see the peanuts she was eating rather than me just mixing a powder into a drink or applesauce, the idea of eating peanuts was starting to make her nervous again. He decided to slow her schedule of dosing way down. We’d stay at one peanut where she was comfortable for a month or however long it took. We’d only updose when she was ready.

This is the beauty of Oral Immunotherapy in private practice. Doctors have the flexibility to tailor programs to individual patient’s needs. After we slowed down and told her she’d never have to updose until she was ready, her severe stomach pains miraculously disappeared. Slowly, we began increasing her doses, and then finally, on June 29, 2017, my daughter had her final updose appointment. She ate 10 peanuts at once and nothing happened. Her fingers used to swell up tremendously if she even touched peanut residue, and now she can reach into a giant tub of peanuts and count out 10 of them with her bare hands. She can then eat them without going into anaphylactic shock.

This is freedom.

 

If there was one thing that I wish people could understand about our decision to do OIT, it is this: Oral Immunotherapy has helped my daughter gain control over her anxiety and has given her her life back. Well-meaning friends have asked her, “Are you so excited to eat Reese’s cups and Snickers bars now that you have completed OIT?”

OIT is not about eating peanuts. Not for us anyway. OIT is about living without fear. She can travel, go to the ballet, eat at restaurants, go to movies, spend the night at her friend’s houses, and maybe even kiss a boy who didn’t properly sanitize his tongue after eating peanuts (but she can wait at least 30 years for this one) without fear. Her personality has emerged over this past year. She has gone to one birthday party and two playdates without me. She hasn’t asked me if she is going to die in her sleep as I tuck her in at night for as long as I can remember.

For our family, Oral Immunotherapy has given us the freedom to live without fear. OIT worked for our family. I am so humbled, so relieved, and so thankful.

Some common questions:

Is she still allergic to peanuts?

Yes. She still carries her EpiPens, and she can still have a reaction. OIT has helped her immune system to become desensitized so that it takes much more than a fraction of a peanut to cause a major health crisis. Theoretically, our daughter can accidentally eat up to 10 peanuts without anything happening to her, and as our doctor said, “It is pretty difficult to eat ten whole peanuts without realizing it.”

Does she have to eat peanuts forever to remain desensitized?

For now, yes. She must eat her daily maintenance dose of ten peanuts in order to remain desensitized. It is a small price to pay for the freedom we have gained.

Could OIT cause a reaction?

Possibly. We got through our entire OIT protocol with no true allergic reaction (however, we did have issues with anxiety as I mentioned). There are rare times when children experience a reaction during their OIT journey. At first, this terrified me. Over time, however, I realized that eventually an allergic reaction due to accidental exposure will happen no matter how much I try to control my daughter’s environment.

With OIT, she is in control of the peanuts. With strict avoidance, the peanuts are in control of us.

Can your child be too allergic for OIT?

No. There is a general consensus that the more allergic a child is, the more they can benefit from Oral Immunotherapy.

Some resources:

• oit101.org The primary source for copious amount of information on Oral Immunotherapy as well as tools to help find an allergist near you.
• YouTube Channel of an allergist in New York (not our allergist) who makes videos of kids who have graduated Oral Immunotherapy: https://www.youtube.com/channel/UC9CyosHajfYS6adITnILPvA. We watched these videos as we waited to start OIT, and my daughter found them inspiring and calming.
• Two Facebook groups: “OIT 101” for families considering Oral Immunotherapy for someone they love and “Private Practice OIT” for families currently undergoing treatment.
• Search #OITworks.
• A book written by a mother (Katy Patrick) whose son went through Oral Immunotherapy: https://www.amazon.com/dp/B06W57FWVM/ref=cm_sw_su_dp