Day 6 (Wednesday)

Zoey woke up clear after a night of wet wet wraps.
We returned to NJH early or attempt a baked milk challenge. Dr. Lanser wanted to check out Zoey’s skin and discuss yesterday’s failed baked egg challenge.
He said that if we were at home and saw those symptoms (itchy throat, coughing and swelled lip) we should not hesitate to use the epi-pen, rather than the Benadryl used yesterday. If he had heard any more coughing he would have used epinephrine but since she was in a clinical setting with bp, heart rate and oxygen levels were being monitored and steady, they chose the antihistamine.
I was happy he clarified this, since I would have used the epi at home seeing those symptoms.
We were ready to begin the heated milk challenge. Unfortunately while we were talking she was tearing up and down the hallway burning energy, nosediving into couches in the common areas and started flaring and popping hives. It’s been wonderful to relax and let her be a kid so much lately since she’s been itching less, so I wasn’t hovering to avoid the itch.
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As you can see in the pic above, Zoey adores Dr. (“BJ”) Lanser. He’s built a great deal of trust with kids because he engages them in play before, during and after procedures. Kids want to please him. He is wonderful about spending all the time the parents need to discuss questions. Never antsy to get away, which I’ve never experienced with a specialist. His future patients should count themselves lucky.
We had to wait 45 minutes for her to clear up again to start the challenge.
We finally started with .1 gram of a muffin baked with cow’s milk. The challenge would be divided into 6 doses. The first 3 doses, spaced 20 minutes apart went fine ( see below of number three) but by the 4 th dose, Zoey was complaining of a stomach ache. Her vitals checked out fine, we waited 40 minutes and Zoey told us her stomach felt “grrrreat!” We repeated the 4 th dose.
We were 4 hrs into this and Zoey wasn’t able to eat during this time and we were just counting down the minutes to the 5 th dose, about 2.5 grams of a muffin with baked milk. She walked up to the #5 and hurled everywhere, several times.

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We called it quits. This reaction was pretty different, and a lot less scary than baked egg, but we were wiped out. We still had two ( uneventful) hours of monitoring ahead of us and no food or drink until we could get back to the McDonald house. We’ll try this one again in a couple months with a new local allergist. I need a break from the 3-day marathon of food challenges, and want to take advantage of the education classes for managing her conditions, parent groups and the dietitian. When you are doing food challenges you can’t go anywhere, or really eat. The patient can’t eat or leave the unit to go to the awesome playroom.
When we finally made it back, Zoey got really itchy and she had a splattering of hives extending from her lower abdomen to upper legs. The rest of her skin looked fantastic.
I don’t know. Hives like that have only ever appeared in an allergic reaction, but why so delayed?
This disease is so frighteningly inconsistent in appearance and timing.
Because I was so tired and hungry, and because she needed to play more than anything, we headed off to the kitchen and met up with her new friends, one who is at NJH for treatment. This little girl is a very mature 5 yr old who was conscious about washing her hands after eating and worried about Zoey after watching her dose all day and getting hooked up to monitors in the triage area after her reaction. I love seeing empathy in kids. I love them and their parents for doing such an awesome job.
We ate together and they played for the next two hours. Zoey didn’t itch once:)

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6 responses to “Day 6 (Wednesday)

  1. That sounds like a long tough day for the both of you so I’m glad your taking a break from the food challenges and taking advantages of the parent and education classes in the meantime. A much needed break for the both of you. When I read this stuff, I’m still amazed of the stamina of Zoey and your perseverance in dealing with all of this in the quest for knowledge with trying to make it better!!

  2. i am just in awe. of how brave zoey is (merida!) and your sustenance. i dont think i know anyone physically or emotionally stronger than you at times. it sounds like a long day, long trial, going without alot of basic needs met. i think even though there was a reaction, that it was alot more muted than egg is amazing to think about. and to have the possibility to try further along in the future. and i am SO glad you and zoey are taking a break from the challenges for a bit. you’ve learned so much already, and i truly am grateful to this wonderful place for their expertise, and just that they exist! love you, and good luck tomorrow.

  3. Love her pose with the Doctor, but then again that is Zoey!! Hope today goes better for both of you and your right, her skin does look amazing!!XOXO

  4. I didn’t realize how intensive these food challenges are! Zoey sounds extremely brave and so do you. Also sounds like each day you’re gaining more and more knowledge about these allergies. The wraps sound like a godsend, is this something you continue after your time at NJH? Always look forward to your posts, thanks for taking the time to record all of this it is the most helpful way for us to understand. And for you to remember everything! Love you both much.

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