This morning I called both the pediatric Allergist and the GI doctor. I wanted to tell them about Mr. Happy’s increasing reaction to the Neocate, and our experiment this weekend with dilution.
The GI was in labs all day, so his nurse (who was barely comprehendible) took a message and said he would call tomorrow. The Allergist called back today, and agreed that it sounded like Mr. Happy was having a reaction to the Neocate and asked how she could go about getting WIC to change our prescription. She also agreed with me that there was concern over diluting the formula long-term, not just because of caloric and nutritional intake, but also because of too much water wrecking his sodium levels.
I called the WIC office later in the afternoon to ask if they had received the information from the Doctor, and they had. They asked that I call them back tomorrow to find out when the new formula, Ele-care, would be delivered.
Fingers crossed that he takes to the Ele-care better than the Neocate! Or, at the very least, that it re-starts the reaction process to buy us time for my system to clean out somewhat on the elimination diet so I can start nursing him again.
Later this evening, I was back to reading my FPIES Mommy-blogs and I had a sudden, rude awakening.
To backtrack, the ingredients in the Neocate are: Corn (57%), Safflower Oil (7%), Coconut Oil/Palm Oil (7%), and Soy (6%). The remainder is a “less than 2% of the following” list of vitamin additives. So, the liklihood is that Mr. Happy is reacting to the Corn or the Soy in the formula, as those are the two most reactive ingredients in the list. Coconut Oil would be my 3rd choice for possible reactions. Still, with Corn at 57% of the ingredient list, it takes the lead as the most likely trigger food.
Therefore, we should most diligently avoid corn for the near future, so as to avoid accidentally triggering him until we’ve established a firm baseline and can therefore ‘scientifically’ test him for corn. Logical, right?
Ahem. Here’s where I got my education.
Did you know…table salt has corn in it. Children’s Benadryl has corn in it. Children’s Tylenol has corn in it. The spray that they use on fresh fruits and vegetables in the grocery store to keep it fresher longer has corn in it, even! Kids put everything in their mouths…paper, bits of sheetrock, cupcake baking cups – all of which have corn in them! Corn is freaking WORSE than dairy and soy! It’s in everything, and it does NOT have to be labeled as an allergenic food! UGH!
Even better?
Prevacid has DAIRY in it!
Please bear with me as I remind you of the fact that Mr. Charm TOOK Prevacid for the first oh, 9-odd months of his life, and Mr. Happy was recently prescribed Prevacid the day he entered the hospital.
May I remind you also that Mr. Charm has a DAIRY intolerance, and Mr. Happy has a 4+ IgE, Epi-pen-worthy allergy to DAIRY.
(Please excuse me while I mutter a curse and an oath and stomp around in frustration.)
The only solution to this is to have the pharmacy specially compound these medications to be dairy, corn, food color, whatever-else-free. We do not know if this requires a doctors prescription, or if it is something we can simply request. We get to start learning about that process tomorrow.
At this point, the Geek and I are going back and forth about whether or not we should make corn the first trial food for Mr. Happy once we’ve established a baseline for him.
On the pro side of the argument, then we would know whether corn is a ‘fail’ food for him and needs to be avoided. That’s always a nice feeling…knowing something is better than guessing.
On the con side of the argument, it is incredibly common for an FPIES child with a mild sensitivity to a food to become HIGHLY sensitized to the food after trialing it. Which means, we may be able to get away with trace amounts of corn in foods at his current level of sensitization, but after a trial, we would not be able to and he would wind up in the ER often for trace contamination. (See my very small, incomplete list of things you can find corn in above as evidence of trace contamination.) This would not only suck from a “my child is in the ER” perspective, but would also make food trials more difficult. Did he react to the ____ or the corn that was in ____?
See what I mean?
I’m kind of leaning towards NOT trialing corn right away. I’m actually leaning towards playing the “better safe than sorry” angle and not trialing corn until he’s closer to 2 years old. It’s sort of like taking your child to the ER. If you don’t take them, you can easily tell that you should have. If you do take them, you may never know if it was completely necessary or not. But your child will be safe and healthy!
If we don’t avoid all corn, we may find he is incredibly sensitive to it and our ability to safely trial foods and keep him healthy will be compromised. If we do avoid all corn, we may never know if he is truly sensitive to it or not. But he will certainly be safe and healthy!
Rock, meet hard place. Hard place, meet rock.
Welcome to my new reality.
First steps first, though…let’s hope the new formula takes to him better. And with the revised list of ingredients in the Ele-care, we may be able to whittle down the potential allergen list even smaller than it already is. It will still probably take a week or more for WIC to get the formula for us, so I guess the first step is to actually keep praying that Mr. Happy doesn’t progress in his reactions straight into the hospital again. He is absolutely showing build reactions, and they appear to be building more and more.
In financial news, after talking with a few friends about how much their hospitalizations cost, we’re visualizing the worst-case scenario. And honestly? We can’t imagine how on earth we’re going to pay for the medical bills we’ve already accumulated, let alone any that are to come up over the next few years. We keep looking for any programs we can get on, but we always make just enough money to not qualify. The state-established health care for children that is so awesome? Because we have employer-sponsored health care, we don’t qualify for one version of the plan. For the other version of the plan? We make just enough too much to qualify.
So we’re poor enough to be bankrupted by the medical costs, but wealthy enough to not qualify for any governmental assistance for our kids.
Nice.
And yes, that’s with me not working, but when I do go back to work? My salary is already spent every month on mortgage and child-care costs. There is no extra for these medical bills unless I work away from home even more than I’m already going to have to. With a child that needs serious monitoring for 7-14 days after introducing every single new INGREDIENT (because yes, I’ll have to spend 7-14 days to see if I can add Cinnamon to his diet), I can’t afford to be away more than I already will be. So, yeah, my salary will not help dig us out of this hole at all.
Just one more thing to deal with on this crazy FPIES adventure. Sigh…it was nice planning weekends in the Caribbean for our anniversary this year. Guess we won’t be doing that…or anything else unnecessary for a long time to come.
I will do this and more to keep my children healthy and safe. It’s just…painful and depressing to think about.
Welcome to my new reality.
