Yesterday Brian and I met with his Allergist. I really feel at ease with her and it was great when she went looking for a nurse to play with Brian so I could focus on what she was saying. But Brian being Brian, he chose to climb all over me instead of playing with someone new.
After discussing the results from his endoscopy and identifying that Brian has lost a pound since she saw him last, she showed me a game plan for reintroducing food into Brian’s diet.
There are four groupings of food. Food is placed in each category based on what the doctors have learned from previous cases, and which foods they feel have a higher reaction rate. When beginning a food trial, three to five foods are chosen from the first grouping (just a sampling of fruits and vegetables). Each chosen food is introduced for five days and the child is monitored for any possible reactions. If adapting well, then another food is added to the diet for five days, and so on and so on.
Brian’s doctor and I examined the food lists and discussed reactions he has had in the past, whether through an allergy test or a physical reaction after eating. Although apples fall in the second grouping, we felt this was a food Brian is comfortable and familiar with, making it a good starting point for the trial. We also decided to limit his food to three options at most, and we hope he will be so excited to eat food, that he will eat something he normally wouldn’t.
After two months on the food trial, another endoscopy is performed and biopsies taken to see if there are eosinophils present. We decided to keep his food options low so that we have a better chance of identifying the food allergy if eosinophils are found. If we were to go with five foods, it would be harder to identify the culprit and we would have to start all over again.
In addition to figuring out Brian’s medical game plan, we talked about what was best for him as a patient. I began our appointment by letting her know we wanted to complete one food trial under her supervision. My hope is that I will have a foundation to take back to Phoenix and will know what she expects when I work with a different doctor.
Of course, I said this before she explained the time frame.
Since it will be mid November before he has his scope, we discussed the possibility of Brian and I returning home and then flying back to Philadelphia for the endoscopy. The other option is to remain here until the next endoscopy is completed and hopefully be home for Thanksgiving.
While at the appointment, she completed skin testing on some of the foods Brian tested positive before, and added some external allergens like dogs, cats, and grass commonly found back east. Thankfully, all of his results were negative. This opens up the foods we will be able to trial, as long as there is not a physical reaction after he eats or drinks said food. We also decided to avoid any foods that may have tested negative, but Brian has a history of being ill after eating them.
We finished the appointment by scheduling another round of skin testing for next week and the decision to begin trialling apples in Brian’s diet.
As soon as I was in the car, I called Matt to fill him in and asked him to contact our insurance representative. We had discussed and agreed that we were in this for the long haul, and he agrees with wanting the first food trial to be overseen by his doctors at CHOP. Of course, he wants us home too, so he is open to the possibility of us flying back here in November. We are in a state of limbo until we hear from the insurance company. I left the appointment believing we could be home as early as next weekend or not until November.
Then last night happened.
I went to my cousin’s house after the appointment and she graciously offered an apple for Brian to eat. It was the first solid food he has eaten in seven weeks and he was THRILLED. I was overjoyed to see him eat each entire piece, skin included. My excitement probably got the best of me as I allowed him to eat more than he probably should have, but he had only had 11 ounces of formula all day (should be drinking 48 ounces) and was refusing to drink anymore. I knew he had to be hungry and it was nice to see him holding something other than a bottle.
My excitement was short lived when we arrived back at the hotel and I heard the worst sound coming from my tiny boy. Fearing I had a huge mess on my hands, I rushed to grab the wipes and a new diaper. What I found was the apple, completely undigested. I cleaned him up and put everything away just in time to hear it happening again. It was obvious it was causing Brian discomfort and I began to fear a reaction.
This morning I spoke with a nurse who recommended we stop the apples until she talked with the doctor. I wondered if his stomach couldn’t process the food after being on just formula for so long, or if this was a sign that apples could be a problem. Nothing with my little man is easy, so why would this be any different?
Hopefully, if it is a reaction, I can try a new food tomorrow…maybe carrots. If it is a normal occurrence following an elemental diet, then I will start again with a smaller amount of apple pieces.
It is hard and frustrating, because after this happened it came to mind that I should stay here till November. I live with the fear of Brian having a reaction and I am so far away from his doctors. I know I will have to get past this if I plan on having doctors back home continue the food trials after the first round, but I guess for now I need a foundation to cling to and his Allergist is offering just that.
I feel as if I am right back where I started. Whichever decision I make will have consequences. If I stay, I miss out on being with my family and events coming up. If I go, I risk backpedaling on three months of progress where Brian is concerned.
To some that may sound cynical, but really I am trying to be realistic. I trust the doctors we have met here and the work they are doing for Brian. I am beginning to research potential allergists back home to take control, but we were burned before, so I hope you can forgive my hesitancy.
In addition to the personal aspect, what our insurance decides will be a huge factor. I am hoping that they will be willing to work with us since I have done everything they asked so far.
Just like before, until the phone rings with news from the doctor or insurance company, we wait. Brian will have more tests next week and we will try to take it one day at a time…hopefully with food.