I’m pleased to report that yesterday’s hospital-based milk challenge was uneventful!!
Everything went as planned and maybe even better than I could have hoped. People are often asking about what the challenge entails so I’ll give a brief overview of our day (I’ll do my best to make to make this post less boring than the actual day).
Once we were registered and assigned to a room and nurse, E’s height, weight, blood pressure and pulse ox were measured and the nurse listened to his lungs. This was actually a little nerve-wracking for me because E had a pretty bad cold last week and still had a little bit of congestion and a cough. His pulse ox was a little low and his lungs weren’t completely clear. The nurse said that she didn’t know if the doctor would move forward with the challenge. Thankfully, the doctor hesitantly agreed to do the challenge since it was an FPIES protocol and there wasn’t really any concern that the food would cause respiratory distress (like there would be if it was an IgE trial).
Once E was cleared to move on, it was time to have the first dose. This was E’s first trial without an IV. Before his soy and barley challenges the IV team placed an IV so that they were ready in case the food caused excessive vomiting that resulted in dehydration that required IV fluids. Placing the IV was time-consuming (we had to wait for the team to arrive and then actually get it placed and secured) and traumatic (just imagine being a year old with tiny veins and being held down while someone sticks a giant needle in your arm multiple times trying to find the small veins). I always found the IV reassuring but E never needed it, even when he failed the soy challenge he recovered quickly and without intervention. So his allergist said that he didn’t need it this time. Without the IV the challenge got off to a much better start!
He got his first dose – 10 ml of lactose-free milk – at 8:50 am. He sucked it right down and seemed to really enjoy it. About 20 minutes later the nurse rechecked his vitals and his skin and he was given his second dose – 20 ml of lactose-free milk – at 9:15 am.First taste of milk!
Then we waited. E watched some Curious George, played in the playroom and enjoyed the new car we bought for him. An hour after his second dose he was able to eat and then he went back to playing. He was so incredibly well-behaved. He had a great time enjoying the different toys in the playroom and playing with the other kids who were also having challenges. During his previous challenges his vitals were rechecked every 20-30 minutes. This time the nurse basically just kept an eye on him to make sure he seemed ok, without getting any actual data.
I knew the 2-3 hour mark was E’s typical reaction window. So at about 11:00 I convinced him to have some quiet time, laying on my lap while watching more Curious George (he has a bit of an obsession). Several times during the next hour I caught myself holding my breath, but E seemed to be doing ok. At about 11:30 he got squirmy and at one point he flinched as though he had a really bad stomach cramp. I prepared for the vomit but it never came. I asked him if he was ok and he gave me his standard “uh-huh.” I don’t know if he had some discomfort in his belly or if I was just being crazy and hyper-viligant. He didn’t seem quite right but still no vomit.
By noon he wanted to get back to the playroom, where he spent most of the rest of the time we were there, taking occasional breaks for snacks. He had one bowel movement before we left that seemed a little unusual – slightly runny. It was different enough to make me notice but not enough to make me overly concerned.
At 1:15 E was discharged with instructions to continue the trial at home for the next 12 days (1 oz of milk for 3 days, 2 oz the next 3 days, 3 oz the next 3 days and then 4-8 oz the next three days). We were told to continue to watch him closely for the rest of the day and to call the on-call allergist if there were any concerns.
Someone was very happy that he didn’t react to milk!
I’m calling milk a “preliminary pass.” It’s a really good sign that he didn’t have a full acute reaction. And he didn’t have any signs of an IgE reaction. But there were those couple of things that made me wonder if something was going on that we couldn’t see. I’m not going to celebrate until we are through the next two weeks.
The rest of the day was pretty normal. E was sound asleep before we left the hospital’s parking garage, but it was nap time so that wasn’t surprising. He was a little hyper last night, but that’s not too unusual. He slept well and woke up at about his normal time this morning.
At 7:30 this morning I have him an ounce of lactose-free milk. He didn’t seem to enjoy it as much today but drank it all anyway. Then we went about our day. Ok, I’ll admit, I slightly manipulated our day so that we were home and playing outside during the time period with the highest likelihood of vomit (we just bought a new carpet to replace the one that was destroyed by vomit when E was a baby). He generally seemed to be fine. The only odd thing that happened was that while he was playing outside at one point he just laid down on the sidewalk. He’s usually incredibly active and has more energy than I could ever hope to have, so this was really weird, but not really indicative of the reaction. He was also very whiney during our trip to the grocery store this morning. But, honestly, he was just acting out the way I felt about going to the grocery store today. We’ve had a crazy couple of weeks with multiple colds, an unexpected house hunting blitz, and a food challenge. I think we are all pretty exhausted.
We have two days of drinking milk without incident. This is huge! E may have actually outgrown his dairy allergy! I’m still afraid to get too excited, but I’m proceeding with cautious optimism. I do think it’s safe to say that he does not have an IgE milk allergy! It seems that our epi-pen carrying days are over! That is super-exciting and a huge relief! FPIES sucks but it isn’t nearly as scary as an IgE allergy.
By the way, we were also a little relieved that the offer we put in on a house was rejected in favor of a higher offer. It was a great house but I’m really glad that I don’t have to spend the next two months packing on top of everything else we have going on.
Thank you all for your thoughts and prayers. Please keep us in your thoughts as we continue our at home trial. I’ll keep you posted.