E was diagnosed with his IgE milk allergy on a Friday afternoon, the Friday between Christmas and New Year. The allergist appointment and events of that night were a stressful whirlwind of emotions and logistics. Despite our feelings of anxiety and fear related to the fact that milk was equivalent to poison to our four-month old, we had a limited amount of time to fill the prescription for the epi-pen and figure out how we were going to get our hands on Neocate (let alone pay for it) before we went into another holiday weekend. On top of all of this we had a baby boy who was totally off of his schedule, hungry, and still wondering why we let a stranger scratch his back. At some point that evening I called my mom to fill her in. She was anxiously awaiting the results of our appointment and I needed to process. I told her about the allergist’s impressions and the scratch test and learning how to use an epi-pen and the new formula that was going to change our lives. And I mentioned that the next time E tried milk it would be in the hospital.
It’s no wonder that in all of the chaos of that night and the relay of information (that I didn’t even fully understand at the time), that there were some miscommunications. A couple of days later my sister called me confused, “Mom said that E will have to try every new food in the hospital, is that true?” I explained to her that it was only milk that he would have to try in the hospital and that it would be ridiculous to have to try every new food in the hospital. He was only four months at that time but the allergist had already told us that new food could be introduced when he was ready, while avoiding milk. We laughed about the miscommunication and the absurdity of trying to feed every single new food to an infant in the hospital.
Ah, ignorance was bliss. At that time I had no idea how complicated our relationship with food was about to become. After that E continued to have chronic FPIES reactions as well as several acute reactions. We learned that we do indeed have to introduce new foods in a very controlled and drawn out way and that every new food has the potential to be an allergen. While we are able to introduce most new foods at home using one of our own food trial protocols, we also have two clinic-based food challenges under our belt (neither one for milk) and we are gearing up for 3 more before the end of the year!
Starting today we will embark on 6 weeks of food challenges/trials. We will go to the hospital’s out-patient clinic every other week for E to have his initial dose of dairy, rice, and oat. If he passes the first day, we will complete the rest of our two-week food trial protocol at home. These are the allergens that we’ve known about the longest. The ones that pretty much define E’s FPIES. I’m super-nervous and plan to be super-strict about the trials. And we are doing all of this over the holidays!
You know, because it isn’t stressful enough to take your food-allergic, curious toddler to holiday parties and dinners hosted by other people. Now we’ll be doing it in the midst of food trials, when an accidental exposure will cause even more stress and confusion than usual.
Oh, and just for a little extra excitement, we made an offer on a house last night. So we might be moving during all of this.
You’re right – we probably are crazy. But these appointments were the earliest we could get. We made the appointments in September and the first available was November. We didn’t want to have to wait any longer than that. E has been avoiding dairy since December 2012 (about 23 months) and rice and oat since about March 2013 (about 20 months). His scratch tests have been negative for all IgE allergies (including dairy) for the past 18 months. We are well over the 12-18 months of avoidance that is generally recommended and we are eager to find out if he is still allergic. I feel like I need know. I need to know if I have to continue to be so paranoid around these foods. I need to know what we are dealing with. And the only way to know is through a challenge.
I have no idea how the challenges will go. I vacillate hourly between daydreams of passing the challenge and sharing ice cream with my son and preparing myself for the devastation of a fail. This is our third challenge in the last year. We know the drill. We know where the clinic is, where to park, how to check in. We know the procedure, that we’ll wait in a waiting room (where they will be irritatingly be playing Spongebob on the TV) until 8:00, when a nurse will take all of the families up the the clinic. E’s vitals will be taken, we’ll be assigned to a room, we’ll meet the attending. E’s allergist decided that he doesn’t need an IV this time, so hopefully he will face less trauma and get his first dose of the challenge food earlier that he has in the past. We have new cars to play with and all the Curious George episodes on an iPad. Hopefully we can keep my active little boy busy and happy all day in a cramped hospital room
So far we are 50/50 – E has passed a challenge and failed a challenge. We’ve experienced the stress and disappointment of a fail and the joy and relief of a pass. We’ve left the hospital at 4 pm in different clothes, 4 hours after a reaction that soaked both E and I in vomit. And we’ve left at 2 pm, an uneventful 4 hours after E ate a dose of barley. But I can’t predict the outcome of today’s challenge.
To say that I’m anxious is an understatement. For the past two years I have treated a glass of milk near my son as though it was a loaded gun. Today I will put on a happy, excited, encouraging face and watch as he drinks milk. I can’t ignore that at one point he tested positive for an IgE allergy. It’s possible a fail today could result in an anaphylactic reaction, not “just” an FPIES reaction. It’s unlikely, but possible. I know that he’ll be safe. He will be watched closely by medical professionals as well as his father and me. But I’m still worried.
So, if you have a minute today, we would really appreciate any prayers, positive thoughts, good vibes, etc, we’d really appreciate them. I’ll do my best to post an update tonight or tomorrow.