Since May is Food Allergy Awareness Month, I just want to talk about how brave my daughter is, even though she is scared.
The back story
If you’ve been around us much, you know that both of my children are allergic to peanuts and most tree nuts (we still avoid them all). Living with a food allergy can be quite scary at times. Until recently, I probably wasn’t as aware as I should’ve been about the risks, though we always check labels and the kids know to ask if they’re not sure about something. Last summer, the kids had an accidental ingestion, from pizza no less. They realized within minutes that there was an issue, and we immediately got Benadryl into them. Both kids freaked out, and I was freaking out on the inside but was trying to keep my cool for their sakes. Thankfully, no additional action was necessary, but it very easily could have resulted in a hospital visit, if not worse. That was a bit of a wake up call though. As the kids get older, the risks get bigger. I can no longer control everything they eat. They are going to have to learn how to protect themselves and what to do if they suspect an accidental ingestion. They are going to have to be comfortable telling others about their allergy and what the potential consequences are.
After that scare, the kids went to see a new allergist (their old one had retired) and we actually did blood work for the first time to see specifically which tree nuts they were allergic to, as well as to see where their IgE levels were with their peanut allergy. We had only done skin tests in the past, and my son only had peanut tests done because we knew what he had eaten that resulted in his first anaphylactic reaction. My son’s peanut IgE came back low (4) in comparison to my daughter’s (>100). When I saw that number, I got very concerned for my daughter. The IgE doesn’t predict the severity of a reaction, but the probability of having a reaction. With numbers below 10, the allergist said that there’s still a chance that my son may outgrow how peanut allergy. However, with such a high number for my daughter, that is not likely at all. He recommended that we look into some medical trials that are evaluating immunotherapy treatments for peanut allergies.
The first big step
We found a trial site that was just starting to accept patients for a peanut patch trial. There are different trials going on – oral (OIT) and patches (EPIT). Based off of how she reacts when she ingests peanuts (her first symptom is usually vomiting), I couldn’t imagine having her actually swallow a capsule containing peanut. From what I’ve read, food allergies can lead to eating disorders due to a fear of eating the allergen. I certainly didn’t want to contribute to that, and the patch sounded promising, from the research I was able to find. She had to go for an initial visit to qualify for the trial, and due to her age, she actually had to give her own consent to being part of this study.
That first visit was scary for her. She had to have bloodwork done (and the first blood draw last summer was less than pleasant, to say the least). They can’t force her to give her arm up; she has to willingly allow them to do this. She also had to have skin tests done to get her initial reactions. For whatever reason, this was scarier to her than the blood draw!! I ended up rewarding her with FOUR new books when she finally finished the initial testing, and she was accepted into the study once she got her blood work back.
On a daily basis, my daughter has to wear a patch that contains a known allergen. (Well, technically it could be a placebo, but we treat it like it’s the real thing.) She knows that peanuts can kill her. Yes, it’s that serious. Yet every day, she allows me to place a peanut patch on her body. Do you know what happens when you come into contact with an allergen? You might itch. You might get some swelling. You might see hives. You might even experience difficulty breathing, vomiting, and other symptoms that result in an anaphylactic reaction. These are risks. Yet she is still doing this. Sure, she is probably doing it because mommy has told her that this could help her later in life. But she still makes the choice to wear it, and to do her best to not scratch at it.
We had to go back for more bloodwork and skin testing this week. This was our first round of testing since she started ok the patch, and I was excited to see whether there would be any noticeable changes. We had been talking for weeks about being brave and how she knew what was going to happen this time, so there was nothing to fear. She was still scared when it came time to do the skin test. I still find it odd that it’s the skin test that freaks her out moreso than the blood draw. Nevertheless, she had to do it. It might have taken 45 minutes of soothing, comforting, and downright begging before she gave up her arm, but she did finally face her fear and allowed the test to be done. She cried through the blood draw, but then said “I didn’t even feel it!” when they were finished.
In the moment, it might not have seemed that she was being brave. It seemed like she was having a bad attitude. She was scared, but in the end, she overcame those fears. My guess is we will go through the same thing when we get more testing done in three months. However, day in and day out, she is brave, even if she doesn’t realize it and even though she is scared.
The next conversation
Watching my daughter struggle between letting her fear take control or doing the scary thing that she knows she needs to do led to us having a conversation about fears and bravery. We sat in my closet, in my War Room, and started looking up verses about fear. First, this was an amazing opportunity to experience with her. Remember, you are setting the example for your kids. I’m trying to teach her to listen to what God says and not what the world says. The verse we kept coming back to was 2 Timothy 1:7.
“For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” 2 Timothy 1:7 NLT
What a perfect reminder that God gave us POWER! We have the authority to cast out fear! We sat down to find something to help her, and I feel like I came out of that prayer time doubly blessed. We are undergoing a lot of stress and change in our lives. Family, business, work…life in general. To say that it’s scary at times is an understatement. However, I know God led us to this place and is waiting for us to step out on that water in faith. Who knew it would take a scared but brave little girl to remind me what God has given us?
Stay brave little one, even when you’re scared.
PS She did earn a trip to the aquarium after all of her testing. Enjoy a few pictures from our favorite exhibits.
The lion fish: Our God’s not dead; He’s roaring like a lion!!
She got to hold a starfish! And we learned about the little creatures that live in those shells (and how they eat oysters!).
Searching for dolphins in the wild. Sadly, we didn’t see any that day.
Liberty was an amazing addition to the aquarium. (She has an injured wing and cannot survive in the wild.) She was proud and regal though.
I just liked the beauty in this exhibit, and al the colors!
We loved watching the sea turtle.