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%.


  

Still trying to figure it out

I wrote this entry sometime in mid 2015, and never published it.  I was probably waiting for a time when I felt a little more coherent about everything that was happening.  That time never came.  Here it is anyway:




I feel like I am spinning in a whirlpool.  There are several ways to get out, but each time I think I am reaching for the right ladder, I get sucked under again by new circumstances and new things to consider.

I haven't been able to blog about B's journey since January, since she had her anaphylactic reaction in the middle of the night.  Honestly, I want to write now... but my mental block is caused by that stupid whirlpool.  My thoughts are unorganized, nothing makes sense, I'm frustrated.  If you choose to keep reading, bear with me, as I am attempting to do my level best.

Let's start with January.  B had anaphylaxis one hour post dose, probably caused by several different factors that came together to create the perfect storm.  Five days later she broke out in full body hives 2 hours post dose (a minor reaction, but still troubling).  She followed all the rules, didn't have her heart rate or body temp elevated, had a full tummy prior to dosing, drank a lot of water after dosing, had some "apple-something" after dosing... she shouldn't have reacted, but she did.  We have no idea why. Maybe her immune system still had high levels of histamine after her anaphylactic reaction 5 days earlier?

The rest of January and February were uneventful, but then came March.  On March 25th, B had her peanut dose a little later than usual. Normally we give it to her at 5:30, but because she needed to take a shower after swim lessons, we didn't give it to her until 6:30.  She followed all the rules, had the dose after dinner, lots of water, apple-something to wash it down, rested for 2 hours and went to bed at 8:30 after taking her nightly dose of zyrtech.  At 10:15, she woke up with a coughing fit.

(To provide a little history on the coughing fit- this is something new that has started recently but only occurs once every 3-5 weeks.  We don't know what causes her to cough, but it always seems to be in the middle of the night after she has been asleep for a few hours. She will cough for 20-40 minutes and then she'll go back to sleep.  Nothing ever comes of it and I can't link it to anything because it is so random.)

When I went into her room to check on her, I noticed that she was dressed in pajamas that were way to warm (full footed winter pj's) and I immediately changed her into something cooler. As she was coming out of her sleep, she began to get a little hysterical.  She was crying and saying that she couldn't breathe.  I knew it was her nose that was stuffy, and not her actual airway, so  I got her some water to drink and we went to the bathroom to give her a nasal wash with xylitol nasal spray, the same routine we always do when she is coughing like that.  She finally quit crying and began to calm down about 15 minutes later.  Her cough had ceased.  But then she started to get little hives.  First one on her back, then one on her chin, and soon she was covered in them.  I gave her 2 tsp of Benedryl and woke my husband up.  I informed him that we may need to give her the epi pen again.  As we were discussing it, B started to complain of tummy pain (which could either be a GI symptom of anaphylaxis or it could have been nervousness because she heard me talking about the epi pen). My husband looked at her, and just like the time she had anaphylaxis in January, he said "I don't think she needs it."  Here we were again in the exact same situation, and my husband was making me second guess my decision.  Instead of agreeing to give it to her, he called our OIT allergist who, again answered his phone in the middle of the night (this guy is amazing! lol) and advised us to give her 2 tsp predisolone and 1 puff of albuterol (which he had given to us at a prior appt).  He said he couldn't hear B having any breathing trouble or coughing, so he didn't think the epi pen was necessary.  After all was said and done, my little one went back to bed and I stayed up watching her for the next several hours.

So, after having a middle of the night reaction in November, anaphylaxis and a minor reaction in January, and another middle of the night reaction in March, we are again left wondering "why" and just as importantly "what can we do about it?"  Both are equally puzzling.

I started thinking back to the beginning of OIT, when B was being treated by the original doctor.  I've said before that OIT had gone so smoothly for B until she reached maintenance... and while it is true that she never had any major reactions the entire first year of up-dosing, there were several times that I brought up what I thought were weird occurrences.  I didn't recognize them as problems with the OIT treatment because the doctor would always say "it's unrelated."

From the very beginning of OIT, B has had to wash down her dose with a glass of water because she gets a weird sensation in her throat.  Dr. #1 was never concerned about it.  I also told him when B started to have chest pain every time she exercised.  Dr. #1 said it was unrelated, but that he would order a chest xray if we wanted one.  I told him about the two times that B had spontaneously vomited for absolutely no reason at all, and his response was "sometimes kids do that, it's unrelated."  I told him about how B had a hard time breathing and had to continuously take deep breaths all last spring while we were temporarily residing in Mississippi.  He listened to her in his exam room (just by ear, not with any type of medical devices) and said "it's not asthma... it's unrelated to the OIT doses. She is probably just attention seeking."

Thinking back on all of that, I feel like an idiot for not getting a second opinion.  But in looking back, each of these symptoms are probably due to acid reflux- which the doctor we now see, said was a probability during B's very first appointment with him.

We recently took B to a pediatric pulmonologist to rule out asthma (which can also display some of the same symptoms).  She had a chest xray, computerized breathing test without albuterol and with albuterol- all of which were perfectly normal.  The pulmonologist said her lungs looked and performed beautifully.  He also agreed that her specific symptoms sound a lot like GERD.

Now I am in the process of trying natural remedies to help her.  We've raised the head of the bed 5 inches, we've been giving her lots of fermented foods and cultured foods.  I've bought chamomile tea for her to try.  So far she hasn't had anymore middle of the night coughing fits.  She still gets the weird sensation upon swallowing her dose (not every time, but frequently).  She hasn't had chest pain in a few weeks.  For now, we're just waiting to see if it happens again... which is frustrating.

If her symptoms do persist (because a change in her diet was not enough), we are considering chiropractics.  If chiropractics do not help, we will then consider meds.  I am contemplating taking her to a GI specialist so we can get a definite diagnosis- and no longer speculate about the acid reflux.  But right now, it's the only thing that makes sense.