Robert has been allergic to milk his entire life. His reactions have been pretty severe. For 20 years he has done his best to avoid anything that has milk in it. When he was first diagnosed at 8 months of age the doctor said that there will be a cure in his life time. Unfortunately, we aren't any closer to a cure then we were two decades ago. However, research has shown that around 80% of people with a milk allergy can tolerate baked milk. Milk that is baked changes some and is masked by other ingredients and most food allergic bodies don't recognize it and therefore don't react. If Robert were to fall in this category it would mean he could eat all baked goods. Imagine? Cakes, cookies, muffins.... any boxed goods from a store! Wow, how awesome that would be. After all, in the words of Katniss Everdeen, "May the odds be ever in your favor."
A couple of years ago we found a great new allergist who is always up to date on the latest research and understands that avoiding milk is difficult and for many people diagnosed through skin tests and RASTs tests only, not even necessary.
Robert tends to be unique and special (of course). It's rare to find a 20 year old (no longer a kid) with a milk allergy - and Rob's milk allergy is severe. We don't bother with skin tests anymore, and his RAST tests are well over 100 (I think 387 was the last one). But those are just numbers. What's more telling is how his body reacts. He hasn't had a severe reaction to food in a number of years. He does have idiopathic
exercise induced asthma which is a drag, but his reactions to accidental exposure to milk have not resulted in trips to the ER lately.
For these reasons, the allergist and Robbie decided to do a "baked milk food challenge". The appointment was this morning at 8 am but we have been preparing for months.
The first step was to get his asthma under control. This meant that he had to take his Advair twice a day, every day. The second step was to prepare a very specific recipe of what they call a "muffin" to bring to the appointment.
I have to admit, preparing muffins that had milk in them was something I haven't done in more than 20 years! Doing so knowing that I was going to have my son eat them meant I needed to have a nice soothing glass of wine while I baked them last night. I was very nervous, unlike Robert who wanted to try the challenge months ago when we first decided to do it!!!
The recipe was this:
Duncan Hines yellow cake mix
1 cup of milk
1/3 of a cup of dry milk
1/3 cup of vegetable oil
3 large eggs
(one glass of Shiraz for the cook)
Divide into 24 muffins and bake at 350 degrees for 18 minutes.
Robbie thinks they look good enough to eat....in the controlled climate of a doctors office under the watchful eye of an allergist!!!!
We arrived at the allergists office at 8 am where Robbie stepped on the scale, had his vitals taken and did a breathing test to "blow out all the candles". He was "up and at 'em" and ready to take on this challenge!!!
He had to swear to tell the nurses and doctors if he felt any reactions, no matter how small. Good practice since he is considering Law as a profession!
We had to bring 6 muffin/cupcakes to the appointment with us. The nurse took a tiny amount of one of the muffins and smeared it on a stick. Rob then took a minute amount of the muffin and smeared it on his lips. This was the lip test! And then we wait....
and wait...
and wait...
and wait... 15 minutes
to see if he would react!
If you look very closely you can see that there are crumbs on his lips...in those crumbs contain milk.
The nurse took his blood pressure every 15 minutes and checked on him to make sure his lips weren't swelling like Hitch.
Success! Robbie's lips felt nothing. This meant he could continue with the baked milk challenge. I was surprised and thrilled. This may just mean he could tolerate baked milk.
The nurse then brought in two muffins that she had divided into sections. She had cut a piece an eighth of a size of the muffin and then a quarter of a size and a half of a muffin. Rob's next test was to successfully eat an eighth of a muffin from a batch of 24 muffins that contained milk. In order to totally pass today's food challenge, he would have to eat two entire muffins without a reaction.
The nurse directed Robert to take the smallest piece (an eighth of a muffin) and put it in his mouth.
Robert took a big (okay it's really small) bite. And I took a big (okay an enormous) breath.
and then we waited...
and this time within seconds...
Robert felt his tongue tingle and his throat get tight....
I think the nurse was surprised it was such an immediate reaction.
She went to get the doctor who was right across the hall as I pulled out the Epi pens and Benedryl we brought (we trust no one - not even the trained professionals).
However, the doctor and nurse were back within seconds and gave Rob two teaspoons of Benedryl. Rob and I suggested they give another two teaspoons (his usual dose).
Then we waited to see what would happen.
The symptoms got better. The tingly tongue stopped tingling... the throat stopped feeling "funny".
Although he failed the test. He seemed pretty good. His reaction wasn't too bad at all.
Rob and I were disappointed that he failed the taste test. Not terribly surprised, but disappointed. The doctor admitted that although he didn't tell us, he was testing Robert's "threshold" level as well. Obviously Rob's threshold is ridiculously low. He passed the lip test but not the "one bite" phase. Rat farts! Most people need to eat more and it takes longer to react, I guess.
The nurse told us to hang out awhile and she would come in every 15 minutes to take his vitals. Robbie was doing really well and we were getting ready to leave since his symptoms had all subsided.
then 30 minutes later....
Rob felt itchy on the back of his neck,
and under his arms,
and the bottom of his feet
and his stomach felt queasy
So the doctor came back in and the nurse administered epinephrine in his arm. Owwwwweeeee. But Robbie just watched and didn't flinch. No photo of this as I prefered not to watch :-( They also gave him prednisone.
Rob felt tight or wheezy so he also got a nebulizer treatment.
We were getting our $20 co-pays worth today!!!
We had to hang out and let all the symptoms subside (for real this time) ...which they did.
Robbie was just jittery from the Epi and tired at the same time from the Benedryl -an interesting combination. But no more tingling, itching or wheezing.
No spinning heads, green vomit, or welts (Aunt Sue). Nothing to look at! Meds work well when you catch the symptoms quick!
A waste of time? No way! Robert thinks it was well worth while, as did the Allergist. We know that Rob cannot tolerate baked goods with milk. That his allergy is very severe, his threshold is low, that Benedryl isn't enough, and to carry Epi pens always and use them, and keep avoiding milk.
Muffins/cupcakes with milk in them are really yucky anyway!!! :-)
The morning made for for one sleepy boy (okay so I know he is an adult) when they let us leave at 11:30 am.
Sleepy, but hungry, so a stop at Wendy's for a "SAFE" milk free double hamburger -no cheese, no butter on the bun, and change your gloves before you make it - for lunch.
Finally a stop at Barnes and Nobles for a LSAT study guide. It's not paper dolls...but it's what the boy wanted.
I am so proud of Robert for coping with his food allergy the way he does; for not letting it get in the way of his life and for not being afraid of food. Twenty years of experience and the boy knows his body and knows that while food allergies really do suck, they are manageable.
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