The Eye of the Storm

Today is a bit calmer for me. The last couple of days have been rough as I have tried to soak in Elianna's new diagnosis and what it means. One of the things we can always count on about science is that it will continually morph and change as we learn new things, or at least, think we do. Since this is a new syndrome I am so happy that we live in the perfect time where I can use this information to help her. I am also overwhelmed with what it means. While it is not a terminal diagnosis, I definitely feel the weight of how it could be if it is not monitored or taken care of properly. I feel as if I have a child that has been diagnosed with...say....diabetes.

Our doctor reassures me that most outgrow this condition so I am trying desperately to not be overly dramatic, but the reality is that even if she does outgrow it, there will be years of trial and error, record keeping, and modification. It exhausts me to think of it!

Thank you so much for your prayers and for those of you who have sent me a note of encouragement. It really has meant a lot to me.

In regards to her diagnosis, here is an explanation about allergies as I understood it explained to me:

There are two 'types' of allergies. One type begins with respiratory symptoms and ends in anaphylactic shock (like my lovely strawberry, shellfish, and watermelon allergies). The other type begins with gastrointestinal symptoms and ends in severe flu-like symptoms and complete intestinal failure. Science only recently discovered the gastrointestinal side of it, and that spectrum is called FPIES. There are blood tests to identify the anaphylactic spectrum, but not the FPIES spectrum, so it is diagnosed based on common traits and symptoms. Over 50% of infants with the dairy and soy protein problem that Elianna has end up with FPIES.

All of us have memory receptors in our blood that remember allergens. These receptors die out approximately every 18 months. When Elianna is old enough to begin testing her allergies to certain things, we will introduce a small amount and see if she reacts. If she does, we have to wait 18 months before reintroducing that food again. Oddly enough, tree nuts will be one of the first things she can have, and we can try transitioning her off of formula and onto almond milk or hemp milk (hemp milk??).

The nutritionist said that this process of introducing foods other than fruits (no bananas) will also be dependent on behavior. Elianna is developing a connection to solids making her hurt and wants only the bottle when she is hungry. In the meantime she could be on formula for her protein needs until she is two.

This is all the information I have so far. And, let me tell you, it is enough! The concept of working full time, homeschooling Moriah, running a home, and making/growing/buying food to accommodate our needs is extremely intimidating. I am exhausted just thinking about it! The one good thing I can see is that it will keep me on my knees!