Teeter Totter

 Matthew did another food challenge today. He has been a trooper in terms of these weekly events. He has shown so much courage and I’m so proud of him for being able to take these steps forward in spite of his fears. Unfortunately, today was yet another disappointment. He tested a full-size cake baked for 30 minutes at 350 degrees and while he didn’t react to one bite, he did react to a full piece.

There was been a lot of back and forth with these challenges. Sometimes he reacts and sometimes he doesn’t. We’re not sure why but we’re hoping by continuing the process we can get a better idea of what his reaction threshold is so that he can continue to add some new things to his diet. But it is a slow process and it’s definitely taking longer than any of us want.

A More Favorable Outcome

After last Saturday’s cupcake disappointment, Matthew had a bit of success today. We used the same recipe and baked it as a full-sized cake. It baked for 30 minutes at 365 degrees and he did not react. It made for a happier day for him. We still have a bunch on things he needs to try, but this is a step forward.

Egg in His Face

Matthew had another food challenge this morning. We've done so many over the past year and a half that you would think we are pros, but let me assure you that each one is equally nerve racking. We were doing a challenge for eggs in baked goods so I made cupcakes with eggs. After cooking without them for so long, it was actually really stressful to crack them into the bowl knowing Matthew was going to eat them. And my stress is nothing compared to what Matthew deals with. But he has been able to add a good variety of foods back into his diet after past food challenges so he soldiers on.

As in the past, this one went well and now we begin slowly adding things into his diet. The first thing I'm going to give him are those King's Hawaiian rolls. I love those things and haven't purchased them in years because they have milk and eggs. Hello, tasty goodness. Welcome back to my life.

Wait…What? Seriously??!!

Today was Matthew’s annual trip to the allergist. These visits have become pretty routine for us. We do the blood draw, go to the office, confirm that he’s still allergic to everything, get refills on all his prescriptions, and call it good until next year. So I knew how this year’s appointment would go based on the past seven years…at least I thought I knew how this year’s appointment would go.

When our allergist walked into the room, she seemed anxious to get right down to business, something that didn’t surprise me based on the fact that she is very good and therefore very busy. But the reason for being ready to get down to business was not anxiety or a need to hurry, it was excitement. She whipped out the results of his blood work and proceeded to tell me that with the exception of peanut, Matthew’s IgE (the antibody that causes food allergies) levels have all fallen in the past year. And we’re not talking dropping a few points (a little variation is common and inconsequential), we’re talking half of what they were last year.

I honestly never even considered the fact that his numbers might go down. We discovered he was having problems when he was five months old and in all that time they have either risen or stayed the same. So today was completely unexpected. When the doctor started reading off the numbers, I actually cried. I haven’t cried in her office since our second visit when she listed everything Matthew was allergic to, gave me a huge list of things we needed to avoid, and taught me how to use the Epipens.

This came as a complete surprise to all of us, our doctor included. When Matthew was two and his IgE totals had doubled over the past year, she told us that he probably wouldn’t grow out of it. As they continued to rise over the next couple of years, she came to the conclusion that he definitely wouldn’t outgrow it. Today she actually told us that she was losing hope that things would improve for him. She was visibly excited today because based on his bloodwork and the results of his skin prick tests, she thinks he might be able to tolerate eggs in baked goods. He is still too allergic to be able to eat plain eggs or have them in other than baked goods (the high temperatures of baking break down the proteins making them less likely to cause problems), but even just that would mean a lot of foods could come back into his diet. So we will be scheduling another oral food challenge when Matthew goes off-track in December. The food challenges scare him to death, but having done three, all of which have gone well and added numerous foods to his safe list, he is totally on board with doing another one.

As Kev and I have pondered why such a dramatic change after years of stasis, we think that it might be the food challenge Matthew did earlier this year that put milk in breads back into his diet. He’s been eating bread with milk in it regularly for the past six months and we wondered if having an allergen in a form that is safe for him is helping his body learn to manage them better. We don’t know for sure, of course, even the allergist doesn’t know for sure, but we have a feeling that the milk in his diet has been a good thing.

The actual food challenge is a hurdle we've yet to jump, but regardless of how it turns out, this year's appointment has given me something very important: hope.

Got Milk?

Back in September when Matthew had his annual blood test done I mentioned that he had been okayed to do a food challenge for milk in bread. We try to do those challenges when he is off track so he doesn’t miss school and today was the big day. He was nervous, of course. I was nervous to (his worst reactions as a baby were to milk which means I kind of freak out when I think about him having milk), but I didn’t let him in on that fact. Luckily for all of us, he did great. There were no reactions at all. That doesn’t mean that we can get all crazy with the milk, but it does mean he can eat bread and buns that have milk in them. The criteria are that it has to be baked at a high temperature for a long time so that the particular protein we’re dealing with breaks down. So he needs to eat some kind of bread with milk at least twice a week to keep his body on the right track. This is definitely a step forward for him.

Now we need to schedule a food challenge for coconut.

And the Winner Is…

Matthew! For once in his life, Matthew came out ahead of the food allergies!

Today was his oral challenge for almonds and he passed with flying colors which means that he ate all his stuff and didn’t react at all. So his allergist has okayed almonds and has actually said that it looks like he has dodged the entire tree nut bullet so she is comfortable letting him have things with a tree nut cross contamination although she still thinks we should take care with actual nuts, possibly do food challenges for a few others before we really incorporate them into his diet, and watch him carefully as he starts to expand his diet.

We bought him a box of honey nut cheerios this afternoon. He is pretty darn excited.

And I’m just relieved. Not only does this put a few things back on the menu, but all the worst case scenario things that have been running through my mind for the past few weeks did not actually occur…

For those of you not in the know, there is one specific antibody that causes food allergies. Matthew has enormously high numbers of that antibody which means that he gets a lot of false positives when they try to do blood tests for allergies. Pretty much everything they test for comes back showing numbers that indicate allergy whether or not he is actually allergic. Due to that and a positive skin prick test for cashews several years ago, his allergist advised us to avoid all nuts. But she has been doing skin tests and watching for any sign of allergy to almonds (because he is allergic to milk, being able to eat almonds would make almond milk an option as well as soy) for years. After three years and five negative skin prick tests (the fifth was this morning just to make sure), she felt confident enough that he was not actually allergic to try the oral challenge. So hopefully that helps explain why we have avoided nuts all these years and why we will probably do oral challenges for a few more before we just throw all caution to the wind and say he isn't allergic to tree nuts.

But we'll wait a good while because I don't think Matthew is ready to handle all the stress again right away. And frankly, neither am I.