Decisions, decisions....Not all they're cracked up to be

As promised, here I am to tell you about test results. But oh....it is more than that. It's about not being devastated when things aren't the way you want. And about not falling apart when change knocks at your door. The things that I've been thinking through this week are far from major stuff. It is not life or death....for the most part. It is a minor bump in the road, but it came with no clear cut answer.

On Monday, Ski got the call from the dr with test results and the drs instructions. As soon as he heard them, he said, "You've got to talk to my wife!!"

As expected, peanut, tree nuts, and milk are all far above safe challenge level. It was a little bit surprising that even two nuts he had had low testing to before were now well above the unsafe numbers.

What was a bit unusual was that they told us both egg yolk and egg white are now about 2 times higher than they were before. Not only that, but they now want us to avoid eggs once again. Frankly, I was a bit perturbed. Honestly, I could not understand why they tested it in the first place if I had told them that he had challenged and was now eating them no problem. We asked why. But they said we'd have to speak to the dr and we were welcome to make an appointment to do so. So we did. Only thing is, his first available was at the end of Feb. Oh well...we'd wait.

I was beyond frustrated. What did they mean?!?!?

It used to be that everything was based on test results. But current thinking is that food challenge is the gold standard. Not that you want to do that on a whim, but if someone has passed, then why be concerned?

And then I had to do it. I had to go and try and prove I was right. I turned to my son and asked, "Have you ever had ANY problems ever while eating eggs?"

Sheepishly, he told me....
"They make my mouth itch and burn."

Whaaaaaaat?!?!?!? He had NEVER told me this before. And then I remembered it. About a month after he had begun eating eggs at home, he told me during breakfast, "I don't like eggs anymore." And then, I ashamedly recalled how I had scorned the idea and told him he should just eat them. Talk about a moment when you realize that you're a terrible parent!! I wanted to crawl into a hole.

When he was an infant, he did something my other kids had never done. He memorized what his food looked like. He often refused foods as well. Later I learned that his food refusals were strongly associated with his allergens. He never ate yogurt. He never ate eggs. We had a terrible time feeding him. We thought he was fussy. Or picky. But several months after we removed these allergens from his diet, we were surprised to discover that he LOVED to eat. And so he learned that he could trust me and I learned that if he refused a food, to listen. This became very clear to me when I had been trying goat cheese with him and he suddenly stopped eating it. I didn't listen. I still gave him that goat milk and while it was one of the worst experiences I've ever had, I learned a great deal from it.

So...whether it was because I ignored his concerns about the egg or the fact that he has OAS (oral allergy syndrome) and chalked it up to something like that, he never told me that the eggs were bothering him.

Now I was between a rock and a hard place.
Test results trump reaction.
But is this reaction?

So for the past week, I have been thinking, praying, asking, and researching.
And I've come to the following conclusions:

1) It is not normal to have itching and burning in your mouth after eating something.

2) With OAS it is extremely rare to ever have an anaphylactic reaction to the food. I think it is less than 1%. But food allergies are notoriously unpredictable. After years of only having mild oral reactions walnuts, I had full body itching after eating a desert with some in it. No, it wasn't anaphylactic, but it wasn't predictable. And in the past, Iz was a full bucket guy. He'd have minor reactions here and there and finally reached a threshold where he had anaphylaxsis. Now, I am not expecting that with egg, but it seems prudent to give it up.

2) After searching quite a bit, I did run across information showing that yes, you should do levels after reintroduction and yes, apparently re-sensitization can happen.

3)We can still do baked egg so our challenge has not been completely in vain. In fact some doctors advise their patients who appear to outgrow, but test out of range to only eat baked egg for a period of time and then later add in eggs. Baking without eggs is the most yucky part of being a mom to an egg allergic kid IMHO.

4)Frankly, he is not a huge fan of eggy eggs and is completely willing and happy to give them up.

5)We're completely going to let Iz lead us in this area. If something causes him a problem, we're not going to do it.

6)We're still hopeful and optimistic that complete inclusion is around the corner. We just need a bit more patience.

So for now...no eggs, quiche, custard, french toast or mayo.....or any other eggy things. It makes it harder for breakfast...esp Wed when we have co-op and I give the quick and easy protein for breakfast. But I've got ideas already!!

And I am not falling apart. I was completely confused, but I think the more I learned, the more I came to understand the wisdom in taking a step back. If we were talking about complete avoidance, I'd be having a harder time. But I think the baked egg inclusion is a happy medium.