Yesterday was Benjamin's last appointment for this round of treatment.
I left off guessing that Benj would want to try cheese at dinner Thursday night. I gave him a couple of options, cheese being one, but in fact he wanted to eat the meatballs that were in our plans for dinner and which contained egg. By the end of dinner his plate was clean, but he had only eaten part of his meatball. He said it made his mouth feel funny, but as it was a pretty spicy meatball he concluded that it was just the spices. However, a little while later we noticed his eyelids were very slightly swollen and there were bright red patches on his cheeks. Within a few more minutes the redness was gone, but his eyelids remained just barely puffy.
He was a bit restless during the night and when he woke up in the morning he was also struggling slightly with his breathing. The asthma response was very mild, but in the past any breathing issues have only escalated with time. I tested his air flow with a meter we use everyday and he was only slightly below normal, but not in the "caution zone" and certainly nowhere near the "danger zone." Our appointment was early, at 9:30, I decided not to give him any medication so the doctor could evaluate the response. By the time we left the house, an hour later, he was no longer struggling at all for breath. Previously he has NEVER kicked a breathing issue without the use of his meds.
We brought the meatball that had caused the reaction the night before to the doctor. On the way it also occurred to me that the house where we were staying had some plug-in-type air fresheners that could have been part of the asthma response.
The doctor asked about our experience with trying another new item and we reported the slight response to the meatball. We gave him the meatball and he tested Benjamin's muscle response to it, which showed that he was still allergic to something in it. Using the same procedure, he strengthened Benjamin's response to all the ingredients in the meatball. (There is no way to know what ingredient caused the reaction.) Based on my limited understanding there are at least two possibilities for why he reacted: It could have been a new "pattern" to one of the same allergens (I'm not clear on exactly what this means, it's just the language the doctor uses.) Or it could have been a reaction to an ingredient he has always been allergic to, but that we didn't realize because the more major issues were obscuring it. It makes sense to me, based on what I have learned, that it could be that with the big things out of the way and his body already more healthy it is responding to things it just previously didn't have the health, sensitivity or strength to respond to. I'm not sure.
We also talked about the asthmatic response that morning and my theory about the air freshener. He confirmed that the ingredients in air freshener were strongly suspect and tested him for an ingredient common to all air fresheners, which he was indeed allergic to. He pointed out, however, that we had been staying in this house for 3 days and it took him until the 3rd morning to have a response, which was very mild. I also remembered later that we didn't go to the house for the first time until after Benj's first appointment, which obviously was the most dramatic for the beginning of his body's healing process. The way this all played out encourages me that it is reasonable to believe that he really is stronger already.
We talked about next steps, which include a follow-up series of appointments in a month (shorter next time - only 2 days of visits), and testing out various foods until then. We have a plan for the safest way to test out some of the more volatile allergens (such as milk and peanuts). We will start out by putting a tiny bit on his finger and if there is no reaction progress to a tiny bit on his lip, followed by a tiny bit on his tongue. We plan to take the testing process very slowly and methodically. The doctor assured us that if he does react it will be much more mild than previous reactions and he instructed us to bring a sample of anything that causes a reaction to our next visit.
After our appointment we went to a restaurant and allowed Benj to eat part of his hamburger with a bun (something he definitely could not have before, primarily because corn syrup is often used in packaged breads) along with more Heinz ketchup. He didn't have any kind of a visible reaction, but when we returned home (after a 4-hour car ride) he reported that his belly hurt. Although the bun is suspect I think it could have also been the long period of sitting and/or the general emotional upheaval of the last several days.
One final encouraging experience to end what has turned out to be an enormously long post! Thursday afternoon I peeked my head into the room where Benj was having his rest time. He was playing with Legos. I told him I was going to go on a little walk and asked if he wanted to go with me. It's important to note that Benj is characteristically reluctant to go outside and I can not recall him ever agreeing willingly to go on a walk. His face lit up, he jumped up and said, "Yeah! That's sounds like great exercise!" On our way out of the yard he picked up a stick and as we walked he was running along, whacking bushes and rocks and generally expelling lots of creative little boy energy. There are lots of factors which could have caused this burst of outside bliss, but it is clear to me that that afternoon Benj had the energy to just be a little boy which he simply just did not have a couple of days prior.
Going forward I am anxious to see how our hopes and initial observations play out against time and real life. We just don't have enough hard data yet to know if and how this has truly helped him. The initial results have been a mix of huge encouragement and cautious questions. I think there is still more healing to take place in Benj's body, but I am so hopeful that it can happen.
Saturday, February 22, 2014
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