So...

It looks like the milk waffles are not a resounding success. Matthew has eaten a small waffle (about 3” square) every day this past week with no obvious problems. This morning we ate milk waffles for breakfast. Matthew had a full serving after which he had the same “not feeling right” reaction that he had last Saturday. He described it as feeling like he had a golf ball in his throat. Like last week, it passed in about 15 minutes, but to me it says that his body is not ready to tolerate that much milk.

I don’t see this as a failure. I see it as proof that he is less allergic than he once was. I also see it as a valuable bit of info gained. Matthew is disappointed that the milk waffles have not gone as smoothly as the egg waffles. He really wants it to work. But he’s also smart enough to know that not now doesn’t mean not ever. So now I call the doctor and figure out our next step. Based on the info she gave us at Matthew’s last appointment, I suspect it will be continuing to explore eggs, with cookies being next on the list. But we’ll see. The doc is the expert and she may have different ideas.

Take a Big Breath…

Today was the day Matthew switched from waffles with eggs to waffles with milk. Although the initial waffle with egg day was stressful for me, today was much more so. You see, when he was a baby, his reactions to milk were always much more severe than his reactions to eggs. In fact, the only reason I suspected he had an allergy to eggs was the fact that if anything containing egg went into his mouth, he immediately spit it back out. There was none of the raspy breathing, immediate mucus increase, vomiting, hives and accompanying mama panic that occurred when he came in contact with milk. Add to that the fact that percentage wise, there is a lot more milk than eggs in waffles, and I’ve pretty much been a big mother sized stress ball for the past couple of days.

We had a little hiccup this morning when, about ten minutes after his first tiny bite, he declared in a panic that his throat didn’t feel right. He said it felt a little tight, like there were too many people crammed into one room. That put me into a bit of a controlled panic as well. I say controlled because I was pretty much freaking out on the inside but trying to keep my calm but concerned mom face on the outside. Kevin, Matthew and I talked through everything, reassuring Matthew that if things didn’t go as smoothly as the egg waffles, everything would still be fine. Since there was no increase in severity over those next few minutes, we all opted to hold off on the Benadryl and see what happened with a bit more time. After another fifteen minutes or so, Matthew told us that the weirdness had passed, and everything felt normal. With a bit more discussion, he decided he wanted to give the milk waffles another try, so he took one more tiny bite and we waited.

There were no more things that felt wrong, so we kept going, one bite at a time with longer periods of waiting and smaller increases in serving sizes to play it safe. He made his way up to one full sized waffle by lunchtime with no more ill effects. So here’s the thing. He didn’t take any antihistamines last night so any reactions today would not be masked by Zyrtec. His seasonal allergies were so bad when he woke up this morning that the throat weirdness could have been caused by any number of other things. We just don’t know for sure. But in all honesty, I’m still feeling extremely cautious about the whole thing. With Labor Day being on Monday, we have two more days when he can eat milk waffles for breakfast and then be with Kevin or I all day. And all of next week he is planning to eat a waffle for a snack after school rather than eating them for breakfast and then heading off for an entire day away from the parental eagle eye.

At this point, I’m saying today was a cautious success, one that can turn into a full success with more time and more waffles. And I’m enormously impressed with the courage Matthew is showing with this process. He knows that he can stop at any time, but he wants things to go well so much that he didn’t let this morning’s initial scare deter him.

As for me, I just need to remember to keep breathing…

Good News!

Matthew’s food allergy treatment plan has kind of been on hold since our allergist retired a year and a half ago. The doc we saw last year was not a good fit for us. Not only was he not proactive in terms of getting more foods back in Matthew’s diet, but none of us were comfortable with him. Malia saw another allergist earlier this year and we were all much more comfortable with her. She has the attitude of getting my kids into as a normal a life as possible rather than just saying they can’t do or eat things (she suggested the gloves and pretreatment with antihistamines prior to horseback riding rather than suggesting Malia skip it all together), which is much more in keeping with our attitude about how life should be for our kiddos. While Matthew met her back in the spring, today was his first official visit with her.

We do bloodwork and skin prick testing on Matthew every year and there were some surprises this year. Matthew’s number for egg white is down to 10. That is lower than it has ever been! As a frame of reference, when he was three or four, his number hovered around 45, so 10 is amazing! Not only that, but the component testing of the egg proteins (component testing gives results for the individual proteins in each food rather than just the food as a whole) had some even better results. There are two proteins in eggs. One of them is considered “bad” because the protein doesn’t break down when it is cooked. The “good” protein does break down when cooked. Matthew’s number for the good protein is 12, which is fantastic. And here’s the best part-he tests negative for the bad protein!! So although he may never be able to eat eggs cooked sunny side up, eating fully cooked eggs may become a possibility in the future. His number for milk is down to 8 and casein (one of the proteins in milk) is at 6. So that’s fantastic too! Matthew and I were both so excited!

The skin prick testing still shows that he is allergic to the raw egg and milk, but his hives were only about the size of the tip of a pencil eraser. For a comparison, the hives for his environmental testing (grass in particular) were a couple of inches big. The doctor’s reaction to that was to state that Matthew is a very allergic individual. Yup. We’ve heard that before. On several occasions, actually.

With the results of the skin prick testing factored in, the doc presented us with a food plan. She wants Matthew to start eating waffles with eggs in them. After a few weeks, she wants him to switch to waffles with milk. If that goes well, waffles with both egg and milk are up next. And after that, we start trying cookies. How amazing is that?! Our excitement (and trepidation) ramped up with that news, but this is most definitely a proactive step forward. We’ve been playing the waiting game since the retirement of our original allergist, but I feel like we are finally back in motion. Matthew’s body is making some progress and if this all goes well, he will be making some big strides into being able to eat much more normally.

The Milk Trials

Cheese, I’ve missed you. Milk, without you my cereal has been a little dry. And cheesecake, I’ve been lost without you. Dairy, welcome back into my life.

Malia has been drinking milk for two weeks and thus far we have not seen any negative reactions. Not only am I enormously relieved (we’ll keep watching off course, but the fact that things have gone well so far gives me a shot of optimism), but it means that I have been able to add dairy back to my diet. I can’t tell you how delicious my very first grilled cheese sandwich tasted. Ooey, gooey and just perfectly crispy. It has been a long year.