AKA The day I discovered that everything we thought we knew… we didn’t know at all.
The night before I brought Alyssa in for her initial appointment I filled out paperwork with as much detail as I could recall. Under “Any known food intolerance?” I wrote “Dairy.” Why? Well, simply put that was the one thing I thought for certain was a given. We switched her from standard formula to soy at approximately 6 months old to try to curb the constant puking and feeding issues. It did not completely alleviate them but there was definitely marked improvement. The years passed, she got a G-tube, and wound up on a hypoallergenic diet. This whole time we thought she was dairy intolerant. After all, if she came in contact with milk she suffered from major gastrointestinal upset and little red splotches on her face.
With that in mind, imagine my surprise when I sat down across the desk from the doctor this morning and heard “Alyssa has two main intolerances, potato and soy, as well as a combination intolerance of fruit and sugar.” I processed for a second and said “Wait. What about dairy?” Yeah, it turns out that it wasn’t the dairy itself Alyssa was reacting to but the vitamins grown on potato base that are used to enrich most cow’s milk. Couple that with the fact that every formula on the market, including hypoallergenic ones, contain potato, soy, fruit AND sugar! This amazing woman who sat on the other side of the table had assembled a game plan that will manage to allow Alyssa to be g-tube fed and still receive all the nutrients she requires. However, I think I’m getting ahead of myself. So, let me slow down… it is a bit more challenging with all the excitement.
Alright, rewinding a bit. With this method of testing most people have one main intolerance and one combination intolerance. Alyssa, true to form, has two main intolerances. This means that potato and soy are both unable to be metabolized in her body. Now, when you think of potato you think of the major things that contain potato and they are no big deal to remove from the diet. However, the harsh reality is that potato based products are EVERYWHERE. Anything that says “enriched,” ziplock bags, Gerber baby food, bottled water, etc etc… the list is astoundingly long. Furthermore, since it is typically less than 2% of the contents of products companies don’t have to list it as an ingredient. Couple that with all of the things that contain soy in all it’s forms and you can begin to understand the vast amount of food that inhibits her ability to digest and metabolize vitamins into her system. On top of not being able to digest these they also cloud her whole system. Her body is working and struggling to digest stuff that it simply cannot. As overwhelming as all of this information was? It also made me sigh a sigh of relief. It wasn’t the “same” answer that we’ve had for everything. It was DIFFERENT. It meant that the things we were doing were wrong and could be corrected and hopefully improve her quality of life!!
OK. So… how do we do no soy, no potato, and not mix fruit and sugar … while STILL maintaining the proper level of nutrition? It isn’t going to be easy or an overnight fix, but hopefully soon the time that goes into preparation will be canceled out due to not having to clean up vomit multiple times a day. There is a mix of vitamins, supplements, minerals, etc that will be ground and given a couple of times a day. In addition her milk will be enriched with agave syrup (considered neutral and not fruit or sugar) to aid digestion as well as cod liver oil. All of the vitamins are potato and soy free. The vitamin C does count as fruit but it shouldn’t be too big of a deal to keep her away from sugar for 8 hours after it. 🙂 We can plan on birthdays and such to give it to her at a point when it will be 8 hours until sugar.
All-in-all I’m overwhelmed but excited. I think that this will be a pivotal day in her life. A day we look back on as the day things never looked the same. I’m so grateful for the people at Windrose and my friends in Spokane who have opened their families, hearts, and homes and made this seem *so* much more manageable than it would without them! Thanks for all your positive thoughts and encouragement! I’m going to try to update as frequently as possible as we make the transition into our new “normal” because I have a feeling there are going to be *a lot* of changes!!!