Chapter Four, 2013-2015

This post will update Elijah’s food allergies from 2013 to the fall of  2015.

After eggs, the next food Elijah was able to include back into his diet was wheat. He has been eating wheat for a couple of years now, without difficulty. With the inclusion of eggs and wheat into his diet, a whole vast array of foods have opened up for him to eat.

I try to get his allergy levels (IgE levels) tested each year (it’s a blood test). In the late summer and early fall of 2016, Elijah’s levels for soy and pecan had dropped, and the allergist we had been seeing at Children’s Hospital thought it would be safe to try adding those foods back into his diet.

Elijah had been doing so well, and I felt comfortable doing the soy food challenge at home. I gave him soy milk, in increasingly small increments (according to the directions given by the allergist’s office), and he passed. So, we were able to add soy milk into his diet.

Subsequent soy products were not working as well. Soy sauce created stomachaches, as well as tofu. So the only soy product he was able to tolerate was soy milk.

Well, that lasted about a year, because he then became allergic to the soy milk again. I suppose we overdid it. In retrospect, I should have still limited the soy intake to smaller amounts, and let him drink both rice and soy milk, instead of switching entirely over to soy.

The other food that showed a lower IgE level according to the blood test was the pecan nut. For this particular food challenge, I opted to do it in the allergist’s office. Our main allergist was not in the office that day and the test was conducted by a nurse practitioner and her assistants.

The first step is to crush the pecan and rub the pecan on the lips. He was ok with that. The next step is to eat a very tiny amount of it, placed on the tongue. This created a tickle but nothing to be very alarmed about. After each step, there is a wait (I can’t remember how long), and an assessment: they look for reactions, ask how the patient is feeling, etc.

Since all seemed to be going fine, the next step was to eat a whole pecan. (Well, she assistant gave him more than one pecan, it was several pecans. I think it was more than she was supposed to give. It seemed like a huge step to me to go from a powder to what looked like more than a teaspoon to be eaten.)

So, he ate what was given to him, and then things went downhill. His throat felt funny. His lips were itchy. I gave him Benadryl since he said he didn’t feel well, under the approval of the nurse. (But Benadryl cannot prevent anaphylaxis.) He started sneezing. He became less talkative. He lost energy to bend over and pick up his backpack. He was sneezing profusely, then, he started vomiting. I called the nurse in. She called in others and they administered the EpiPen. There were now 4-5 people in the small room.

It was most definitely anaphylaxis. They attached a blood pressure monitor and monitored his blood pressure. He was sick. He was not able to talk, had no energy- and it was very scary. After 15 minutes, if he needed another EpiPen, they would give him another.

Thankfully, the signs indicated he did not need another EpiPen. But we had to stay and wait for a long time. After some more time had passed, more monitoring, they gave him some steroid tablets and he had to stay longer after those were given. He had improved. He was able to talk, he was able to move and pick up his backpack. After all that time had passed, we were released to go home. Thankfully this clinic is located right net to Children’s Hospital; if there had been need for more medical intervention, we would have been close by. You can read about the entire story here in the post: “Anaphylaxis: It’s Dramatic.”

Unfortunately, this appointment was scheduled on the same day as a flag football game. He had to miss the game. He was greatly upset over that and cried a lot. I felt really bad about it. Since they only had a few games scheduled for the season due to the fact that there weren’t enough other flag football teams to play with, missing one game was equivalent to missing 20% of the whole season. I didn’t think he’d have a reaction- and playing football after anaphylaxis is most definitely out of the question.

We learned a great deal that day, which I explain in greater detail in the post I link to above.

It was the first time we had ever needed an EpiPen. I saw it administered, saw the life-saving effects of it, and it became less intimidating to me. If I ever doubted using it before, I could see that NOT using it was worse.

Also, I’m sorry to say I had become lenient about taking the EpiPen everywhere, but after that incident, it was a non-negotiable. No matter how inconvenient it was to carry, we HAD TO TAKE IT EVERYWHERE.  So, I was thankful I was in the doctor’s office, that there was medicine available quickly, that I was able to witness what happened.

It was sufficient enough warning that we needed to be diligent in the future about carrying that EpiPen everywhere we went, so I was very thankful for that warning. It would depend on me asking, daily, if he had his EpiPen with him when we were leaving the house. I made sure it was nearby at home. I had read enough stories of teens and young adults who had become too relaxed about carrying their EpiPens, and had taken risks.

There is much out of our control, but we CAN control keeping that EpiPen handy always. We CAN read all ingredients and ASK QUESTIONS (as annoying and tiresome as all of that may be… it has to be done, because it means the difference between illness or even life or death.)

I still read every single label, constantly, and he reads labels, too. He will sometimes catch something I did not see. (For example, once I bought bread with sesame seeds and I missed seeing it on the label, but he did not.) He is in the habit of reading labels, too.

He can’t go out and eat any food that’s offered to him. The safest option is to simply eat his own food. (This isn’t foolproof, either, as you’ll read in my next post, which will bring this up-to-date until March 2017.) But, we can control some of this. It means saying “no” often.

Being part of gatherings where food is involved means learning how to be involved without eating the food. He is learning to deal with the self-consciousness he feels about it. Yes, it is “different”, but there is nothing wrong or bad about it- it just feels different sometimes. I suppose many people with a chronic illness or pain feel that way, too. It’s not visible, but it’s part of them, and they have to learn how to live with it. He is learning how to live with it.

Pecans, of course, are most definitely out, as well as every single nut and nut product.

In addition, the blood test may have shown lower levels, but it wasn’t a “zero”; the numbers were still in the low single digits. Futhermore, just because he passed the “soy” challenge, didn’t mean he was ready to pass other food challenges. And, as we can see, he wasn’t able to eat any other soy products, and now, he can’t have any at all (except soy lecithin which is added to many products).

And also: no more appointments on football game days.