Henry’s appointment was this past Wednesday. I admit, I didn’t have high hopes for this. We’ve seen 4 or 5 dieticians in the past, and they were never very helpful. I even went so far as to pay for a dietician who was not covered under our insurance, because she was supposed to be the best with food allergies. We were actually referred to her by the pediatric dietician at the local hospital, because she didn’t know what to do with us. Needless to say, the “allergy dietician” didn’t tell me anything I couldn’t have googled, and she basically told me Henry’s weight was fine and we didn’t really need to be there, but to come back for another $150 appointment so she could tell me some more stuff I already knew.
So you could say I was a bit jaded and not really looking forward to this appointment.
I will say that this was the best dietician we have seen. She knew about food allergies and EoE. I have had to tell dieticians in the past things about food allergies that I felt like they should already know. She was shocked that I knew about hemp milk. She said she offers it as a milk alternative for kids all the time, because it is actually really healthy, and no one has ever heard of it. This made me laugh, we really are freaks. I wanted to say, “Um….I invented kids drinking hemp milk 6 years ago.” That would be obnoxious, so I didn’t. She calculated how much formula Henry needs, and then felt really bad telling us because it’s expensive. We reassured her that we will give it to him no matter what, but it made me feel sad that families even need to worry about this. She told us a can will last Henry 4 days, and they are $43 each. No one ever said kids were cheap. She is going to help us try to get some insurance coverage, but Ohio has no law requiring it, and from what I have read on the internet, it’s a long shot. She also gave us a ton of samples, and is hooking us up with a home delivery service that is giving us samples too. I’m taking an optimistic approach that we won’t be needing this much formula after 2 months, but realistically, we are just going to budget for it from now on.
She gave us a ream of paper’s worth of recipes, most of which we can’t use, but there were 3 or 4 in there that seemed doable. She also told us about a few support groups and websites we might find helpful, which I hadn’t looked into, so when I get a chance hopefully they will come in handy too.
Now onto the corn situation. It’s in EVERYTHING. I swear I’ll vote for any politician that promises to reduce the corn subsidies so we can start growing something else. The corn derivative list is a joke. It’s about 5 trillion things, some of which are always corn, most of which “can” be corn. You are supposed to call each manufacturer to get the lowdown. The fun part is most don’t even know. Corn isn’t a top 8 allergen, so with our labeling laws, does not need to be documented on the label. My first run in with my new, “anti corn” position was chocolate syrup. Ok, this is the other thing about corn. They don’t know what people really react to when they react to corn, or rather, people react to different parts. With an “IgE” allergy, (hives, breathing difficulties, etc) the food protein is the culprit. So things like oils are usually safe even if you are allergic to the food protein, because the proteins aren’t usually* present. Well, with corn, people are reacting to parts besides the proteins, like the oil, starch, syrup, etc. (Maybe because HFCS is in EVERYTHING. I hate corn.) Anyways, back to the chocolate syrup. I have a little recipe book from Elecare that had a chocolate shake recipe in it. Henry said that one sounded good, but it needed chocolate syrup. I went to Whole Foods thinking, “They most definitely have a chocolate syrup that doesn’t have corn syrup.” I was right, but the two options they have have Xanthan Gum and some other corn derivative. Xanthan gum is usually grown on corn. (I did find a xanthan gum that is not grown on corn for baking. But that doesn’t help me in this situation.) I came home syrupless, but I did have a huge tub of cocoa from Costco. I ended up finding a recipe to make my own chocolate syrup, and it’s flippin delicious. I don’t think I’ll buy Hershey’s or even anything else from the grocery store for that matter. You can find the recipe here if you want to be Ma Ingalls like me. Moving on…..
This whole chocolate syrup fiasco happened before our appointment, so I went into the appointment with 2 questions, my first was how much formula he needs, and my second was DOES HE HAVE TO AVOID ALL THIS CORN?????? She didn’t know. She sympathized. She asked, “Do you like to cook?” To which I answered, “No! I hate to cook! But I have to cook, so I cook.” She said the same thing I had read, that the different parts of the corn are problems for different people and that it was best to refer back to our EoE allergist. (Here’s where I will give a shout out to Henry’s new allergist we are working with for the EoE. He emails me back THE SAME DAY. I’ve emailed him a lot. I have no shame. He gets back to me sometimes in 20 minutes.) He said that corn derivatives are usually ok, and they don’t “fire up” the eosinophils like the corn protein. He wants us to try to avoid corn starch, which stinks because baking powder has corn starch and it’s in Henry’s “safe” bread. Ian and I decided that we will try to avoid as many derivatives as we can, to give Henry the best chance for a clear scope in April. (If corn is even a trigger, for now we are assuming anything on his elimination could be so let’s avoid it as much as we can.)
She also talked with Henry a lot about trying new foods. He’s very picky. She explained to us all that he has no leeway in regards to his weight, since he is already so skinny. We need to use as many of his safe foods as possible so that he doesn’t lose any weight. Our new protocol for trying new foods is to require 3 bites. She made Henry shake on it, so hopefully he will cooperate the next time I serve him a big pile of quinoa. We also discussed setting up some sort of rewards to chart to motivate him. I am not a fan of those kinds of things for kids in general, but I think in this case it’s worth a shot. Miles & Georgia want in on it too, I’m hoping in a month I’ll have quinoa eating broccoli freaks.
I’ve been spending most of my free time trying to figure out other ideas of food for Henry to eat. We can have fish, but there are only a couple that Henry, or the rest of us for that matter, will eat. The dietician suggested frog legs and shell fish, but Henry didn’t seem too keen on those, and I actually think it would be cheaper to feed us all formula than to be dining on lobster and frog legs multiple times a week.
The best part of the appointment may have been the fact that there was a nutrition student there shadowing the dietician. Near the end, he mentioned that it was his first day, and when it hit me that we were his very first appointment, I started laughing. I told him not to worry, that Henry would probably be his most complicated appointment of the day, if not the week. I’ll be surprised if he didn’t run away and declare a new major right after our appointment.