We are the 15%

When we sought out OIT treatment for B's life threatening peanut allergy, we did so with the knowledge that it was 85% successful and 15% unsuccessful.  We had high hopes that this therapy would be the answer for us and we envisioned our child being able to freely eat peanut, as much peanut as she desired, once the therapy was completed.  We did not consider that the therapy might cause more complex issues, that would ultimately require us to give up on the treatment.

The original plan was to slowly up-dose for a year, from 3mg of peanut to 2400 mg of peanut.  The second year was supposed to consist of a daily dose of 2400 mg, and at the end of the second year- B was supposed to do a food challenge.  If she passed, she would be able to freely eat peanut and would be considered "desensitized."

As I've previously written, B began to experience problems early on in the first year, yet, neither my husband nor I realized that the issues were anything more than minor annoyances.  We also didn't realize that some of the bigger issues that B was experiencing were related to the OIT dose.  Our original OIT doctor used to answer "it's unrelated" for every issue we asked him about... when in reality, it was all related- we just never knew any better; and we were left to figure it out on our own.

B started OIT when she was 7 years old.  At first B would complain about a "feeling" in her throat immediately after consuming the dose.  She couldn't explain this "feeling."  It didn't hurt, or itch, or feel tight, or feel like anything was stuck- but it did cause her to panic a little.  She would flap her arms, stomp her foot on the ground and scrunch up her little face until she could effectively wash the dose down with water or apple juice, which would alleviate the "feeling."  We knew that this feeling was a direct cause of the peanut passing through her esophagus, but since our original OIT allergist wasn't at all concerned about it, we thought of it as a little annoyance more so than as an actual problem.  This "feeling" went on from the first doses, all the way to the last doses.

Throughout the later half of the first year and the entire second year of OIT, there was also the pain that B described as her heart hurting every time she did even the smallest amount of exercise, which had me seeking out pediatric cardiologists.  There was the feeling like she had to burp, yet couldn't get it out.  There was the unexplained minor reactions that would happen at odd times of the day, and the itching on her chin, nose, throat, and the hives that would randomly pop up out of nowhere two and three at a time.  There was the breathing problems, where B would breathe deeply for several minutes at a time... complaining that she couldn't get enough air.  Her original OIT doctor was not at all concerned, and maintained that the heart pain and the breathing and the burps that were stuck were unrelated to his treatment.

Mostly during the second year of OIT, there was the frequent midnight coughing fits, which would send me flying out of bed to check B's vitals and look for signs of anaphylaxis.  Although the coughing fits were never anytime near her dose time, I felt that they had to be related.  B never had midnight coughing fits before starting OIT; but our new OIT allergist did not seem too concerned.

Worst of all, there was the anaphylaxis.  Before OIT, I had never had to inject B with an autoinjector.  During OIT, I injected her twice.  Granted, B should have been injected when she was 18 months old and had her first taste of peanut butter, but since that time we had effectively protected her from any anaphylaxis causing exposures to peanut.  The anaphylaxis she experienced during OIT was ultimately caused by her OIT dose, when her body could not handle the dose plus other environmental stressors.  No one could tell me that was unrelated!

Throughout the second year of OIT, I would seek out the advice of specialists for all of these issues.  The doctors told me her heart was fine.  The pulmonologist said her lungs were the picture of perfect health- she did not have asthma.  The second OIT allergist said that her midnight coughing and heart pains were probably just reflux, and offered a prescription for a PPI.

I never did fill that prescription.  Instead, I spent the entire third year trying to find a dose that did not bother my child.  My reckoning was that if reflux was causing all these issues, then it must have been the OIT causing the reflux.  I thought that if I could go back down to a dose that didn't cause any issues, that we could leave B there for a month or so and then move her back up to a higher dose and she wouldn't need to be medicated just to take her dose.  It never worked out like that.  

B had been consuming 4.5g of peanut at the beginning of her second year of OIT.  During that second year, her doctor had moved her down then back up a few times.  Towards the end of the second year, I began moving her down on my own with no plans to have her doctor move her up until she displayed complete tolerance at the dose she was on, but that dose never came. 

By the end of the third year, B was down to 1g of peanut and still having issues.  I would have to give her Benedryl after dosing her, and she was still having coughing fits in the middle of the night, and breathing issues during the day.  I tried so many different things- apples after dosing, ACV before dosing, pickles with dosing, full meals with dosing, full glasses of water and/or apple juice after dosing, probiotics, multivitamins, daily zyrtech, you name it.  Everything every OIT mother has ever said helped her child get through OIT, we were doing it- everything except prescription medications.  I refused to medicate my young child just so she could eat peanuts- and together my husband, my daughter and I decided that we were going to give up on OIT.

We stopped OIT dosing this summer and since then, B hasn't had any chest pains, nor midnight coughing fits, nor feelings of burps that are stuck.  She has had a few episodes of struggling to get enough air into her lungs, so I am genuinely concerned that these 3 years of OIT may have caused irreversible damage to B's esophagus.  I am worried that prolonged exposure to the stomach acids has caused a stricture (or narrowing) of her esophagus.  I am worried about "Barrett's Esophagus" and I am worried about EoE, as sometimes she feels as if she cannot swallow certain foods.  We are scheduled with a GI doctor to address these fears and we are hoping that there was no lasting damage.

When I think back to the statistic that this treatment is 85% successful, I have to wonder what the definition of "successful" really is?  If you are able to eat peanut without having anaphylaxis, but you have to be medicated for GERD to do it, is that successful?  I know that we are not the only family that has had to deal with GERD caused by OIT- but how many allergists are ignoring the fact that OIT is causing GERD and deeming the treatment a success?  In my opinion, the treatment would have been successful if the outcome had been desensitization without any other side effects.

All in all, I do not regret that we tried OIT.  I know there are so many children out there that this therapy has helped, and I have come to accept that my girl just wasn't one of them.  She is the 15% who cannot complete treatment.  We gave it our all, but at the end of the day it just wasn't the right road for her.

Someday, when it is available, we might try the peanut patch.  Or, we may just continue our lives of strict avoidance.  We don't really know what is next... we just know that it sucks to be part of the 15%.