So......we are waiting patiently (not really) for next Tuesday when my daughter will be tested to see if her milk patch is working. She has been hospitalized for several anaphylactic reactions to milk over the years, and it would be a godsend if her numbers have gone down! We started the milk patch clinical trial over a year ago now, desperate for some semblance of help in the hopeless world of food allergies. It is intended to slowly desensitize a patient through their skin, to which point, no one knows. Will she be able to take a bite of a food containing milk before going into anaphylaxis eventually? That is my realistic hope, maybe one day. We are not foolishly thinking she will no longer be allergic to milk or will be able eat dairy freely. But if she could tolerate cross contaminated food or not react to touching milk products, those seemingly small changes would be a HUGE win for our family. We'll take it over the alternative of doing nothing and taking a new Epi Pen so I can use it the next time we fail at the impossible job of avoidance (which is the standard treatment by the way; doing nothing).
As neurotic as I am, we decided instead to slap that tiny circle on her blistered back every day, while she slugged back Zyrtec and slathered on steroids. We endured 6plus hour long food challenges, during which she required injections of epinephrine after slow incremental exposure to milk caused her body to cross into anaphylaxis. My poor baby, who is only 5 years old, had to put her tiny body through that pain, just to have the chance at this treatment, because that is the requirement for the study, because there is no approved treatment for food allergies, and the ones that are not approved but out there come with risks that we are not quite ready to take. THIS - was our best option. As she begins preschool, where they are just beginning to understand the depths of the needs of kids with food allergies, she is surrounded daily by threats as we walk by spilled milk and sticky fingers to her seat at morning assembly. We have high hopes that we can desensitize her to the greatest daily threat to her safety- MILK. (BTW- The irony is not lost on me that MILK's slogan is "It does a body good." when it has almost killed her.)
Next Tuesday is the day for the blood draw and the scratch test, (not that I am counting down the days or anything). I will be watching like a hawk when they prick her arm and waiting for the email like it's my job (because it actually IS my job as her mom). I am hoping with every fiber of my body that we see some positive results; some sign that this is WORKING. Please cross your fingers for us or say a prayer. This will be the biggest day for our family in a long long time.