Let Them Eat Cake – Day 114

Today’s first is marked by a medical appointment unlike any I’ve been to before.  Our family has looked forward to this first for almost two years.  As silly as it may seem, I was more nervous about this appointment than I was the family cardiology visits earlier this week.  It was a food challenge at the allergy/immunology pediatric office here at Hopkins. 

E is highly allergic to milk, egg, and shellfish.  Over the past 12 years, he has also had allergies to peanut, wheat, and soy.  Fortunately, he has outgrown and/or become tolerant of these.  However, the milk and egg is scary.  Swollen face, wheezing, chest pains, rash, stomach pains….it’s the pandora’s box of allergies for him.  Yes, we have an epipen.  No, we’ve never had to use it.  That’s a fortunate thing because the Loeys-Dietz Syndrome and aorta root dilation means an epipen can be just as dangerous as a anaphylactic reaction.

Obviously, the idea that he can ingest just one of these foods without any reaction would be tremendous.  It would be life changing, in fact, for E.  Today was the day we begin the journey to introduce these foods to him and retrain his body to not go berzerk when exposed to them. 

I had to make a cake last night using the specific recipe the nurse practitioner sent me for a baked milk food challenge.  It called for a box cake mix with a blend of liquid cow milk and powdered dry milk.  We continued to use the egg substitute in it as it would be too much to do two challenges at once.  Over the course of three hours he ate 1/8 of the cake I made which equated to about one serving.  Through this exposure, he received a 1/4 cup of milk.  The nurse practitioner came into the room every 15 to 20 minutes to give him a section of the piece of cake.  The first piece was about the size of a quarter.  Then he worked his way up with each serving or “dose” as they called it.  This was the fourth dose: Image

This was the very first time E has ever had a cake (or any other product) with milk in it. At the end of the three hour challenge, he had ingested the piece of cake with very little reaction.  It was a success!

The doctor and nurse practitioner went over the next steps.  He is to continue eating products baked with milk or milk products in them (yogurt, sour cream, etc) getting approximately 1/4 cup per day several days per week.  This includes goldfish crackers.  He’s never had goldfish crackers!  After several months, we can then proceed to products that are baked and have cheese in them such as pizza and baked mac and cheese.  After several successful months, we can then proceed to foods lightly cooked (cooked on a stove top) which have dairy in them.  Working our way finally after 6-9 months to uncooked milk, ice cream, etc. 

We were all smiling from ear to ear.  Just a day ago we believed E would never be able to ingest a glass of milk.  To have a doctor say this is very likely is life changing.  We are thrilled.  E is already planning his first treat:  a donut. 

We are scheduling an appointment to have the baked egg challenge next year.  Then, finally, we will conduct a shellfish challenge.  It was nice to have a visit with a positive outcome after yesterday.  And for those wondering, the husband’s 3D CT scan results are in and confirmed the lung blood clots.  Eh…. He started coumadin today.  At least we’re at a hospital, right?!  

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