Today was a bad day for me.
We stuck with the diet; it’s already starting to occur to me just how monotonous this is going to get, but I’ll stick with it.
I don’t know how to begin to describe why this day was bad. Lots of little things just added up to a general sense of being overwhelmed, depressed, scared, anxious, and downright tired.
The GI doctor finally called back. Or, to be more specific, his nurse (“she who is hard to understand”) called me back. She wanted to know what I wanted to ask the doctor, and I barely got out a quarter of the things I wanted to talk about before she said “OK, I’ll let the doctor know. We’ll call you back.” and hung up the phone.
I’m frustrated. We are blessed in the fact that a doctor was able to diagnose this condition before Mr. Happy truly suffered for a long time. We are blessed that we have an FPIES knowledgeable doctor on our ‘team’. But I am growing increasingly frustrated with the conflicting orders from the two doctors on Mr. Happy’s team, and the lack of follow-up from the GI doctor.
I’m irritated that nobody mentioned the phrase “FPIES” to me in the hospital; I’m irritated that the doctor so nonchalantly dumped the diagnosis on me in the hallway as our appointment ran over…and frankly, I wouldn’t have even gotten that if I hadn’t insisted on seeing the doctor again. What would have happened if I had let the nurses run me off without insisting on that further conversation? I shudder to think…
So, the irritation from being left hanging in the wind by the so-called experts is mounting every day.
It’s that sense of being left hanging in the wind that is growing a sense of despair in me. My best resource for information right now is a BabyCenter message board group of FPIES Moms. They are the TRUE experts in this uncertain road of treatment, and they have given me fabulous information so far. However, none of them are obligated to feed me data, so I only get answers when they’re able and willing to do so. And often the answers leave me with more questions, which means I ask more and wait to learn more.
I’ve also found some blogs that are truly helpful. The FPIES Toolbox one that I linked to before is fabulous, if a bit too technical for me at this time. I’m sure as I delve more deeply into this, I’ll become well practiced at using phrases like “T-cell responses” and such. However, the author of that blog also writes a more personal blog about her sons’ journey through FPIES, and while it is incredibly informative (in a way I can digest at the moment) it is also incredibly depressing. (Not that she means to be – oh, no! In fact, her faith is inspiring, her children are amazing, and her persistence is motivational. It’s just that she’s been on this FPIES journey with false steps, missteps, confusion and stress for longer than me, and I’m starting to see what my future might resemble on this path.)
I’ve read, thus far, up to the point where her son has been diagnosed with FPIES for a year – and all he can safely eat is millet puffs and peaches. She has to make a homemade formula for him out of Hemp milk, Arrowroot starch, Safflower Oil, and Hemp Protein powder, as her son is highly reactive to corn.
This scares the crap out of me, as I suspect Mr. Happy is reacting to corn as well.
I’ve spent more time on the phone with manufacturers the last few days asking about “derivative ingredients” of their products than I ever thought I would in my life – and I know this is just the beginning.
I’ve had to call the butcher that is processing our cow next week to ensure he doesn’t spray citric or lactic acid on the meat (as is common in butchering practices) because those are made of corn. Doing so would defeat the purpose of our asking for a grass-fed bovine.
I get mixed answers from the allergist and the GI doctor – when I can get them on the phone – so I’m left researching for myself.
I read these other Mom’s stories and learn that this is normal. Most children with FPIES do have a team of specialists in place, but most of their true “Doctoring” comes from their suddenly well-educated Mothers’; from the people who love them so much that they devote their time and energy relentlessly to study the unstudied, to learn that which has been ignored by the medical community thus far.
It’s terrifying, and isolating. My dearest wish is to become friends with some of these women so I don’t feel so alone.
Because if I thought the road was rocky when dealing with Mr. Charm’s IgE Egg allergy and his Dairy Intolerance (which I now suspect is actually a non-IgE mediated allergy), I was living in la-la land.
Walking the road of FPIES has already proven to be like forging a path through an overgrown jungle, filled with poisonous creatures, pit traps, and a dearth of drinkable water. You don’t know which way to go, but you must go someplace, so every step is filled with trepidation.
An encounter with my in-laws today brought the recognition that I will face doubting Thomas’ at every turn in this new path our lives have taken. Comments like “You’re starving that boy to death!” – referring to Mr. Charm – and “Well, there’s not that much corn in Sprite” are, to me, ignorant and demeaning in the extreme…but I know they didn’t mean to be that way. At least, I hope they didn’t mean to be that way.
My path as Mother to my children and Matriarch of my family has suddenly become so uncertain and rocky that it is all too easy to doubt the decisions made. Any lack of support, any signs of incredulousness from just about anyone at this early stage is ultimately deflating.
The truth is, I know there is something going on with Mr. Charm more than just the egg and dairy troubles we already know about. In my gut, I know. He is not being starved. He may suffer from lack of variety in diet for a while, but it isn’t permanent, and we checked with a nutritionist to ensure that we all, but especially Mr. Charm, would be well-nourished through this trial. No one that I have ever heard of died because they were bored with the food they were offered. Frustrated, yes. Angry, almost surely. But died? Nope. He’s getting enough food, and it’s going to get better as I learn more about what I can feed him that is tasty and good.
Whether he, or anyone, likes it or not, it simply must be done. It is the only way to find out what else may be happening with his little body.
As for my diet? I feel guilty that I’m eating so many things on my elimination diet for Mr. Happy. I have eleven items in my menu. Take away salt and pepper, and I have NINE things that I can eat. I’m scared to drop it further until necessary because I’m already struggling to ingest enough calories to keep breastmilk production at acceptable levels.
The irony is killing me. I downloaded an app for my iPhone to help me track calories to LOSE weight. Now, it daily tells me that I haven’t eaten enough. To lose 1/2 pound a week, I’m allowed 1,985 calories per day. Breastfeeding consumes (as near as I have figured) approximately 400 calories a day. So, I need 2,385 calories per day to barely lose any weight and continue to provide nourishment for my baby.
Today, with three square meals and hours spent in the kitchen, I managed to ingest 1,670 calories. At this rate I’ll drop weight like no one’s business, but at the expense of my milk production. I would gladly gain weight to continue nursing my son, but it looks like even maintaining my weight will be almost impossible.
I’m so grateful that the Geek is on board with this. In reading about food allergies over the last two years, I’ve read some women comment that their husbands or parents don’t believe in the diagnosis, and willfully sabotage their children. The thought of that horrifies me.
The Geek and my family are a tremendous support for me, truly. Today, though, I feel like their support is a 5-point harness in my car…but that my car is careening off a cliff and I’m not in control to fix it. It feels like that great 5-point harness is just not enough to protect me from the drop up ahead.
Because, you see, while I’m talking so much about being overwhelmed and scared, uncertain and isolated, the fact remains that it truly is NOT about me at all.
It’s about my two beautiful little boys, and what I have to do to keep them healthy.
I wouldn’t be nearly as scared, nearly as overwhelmed, nearly as uncertain, and not at all isolated, if the health concern was mine. Me? Pshaw! I’ll deal with it.
My babies? Dear God in Heaven Help Me. On this one, I can’t screw up. The burden of doing right by them is huge, and today was a day where I did not feel up to the task.
The truth is, though, that I AM the Mommy. The Mama-Bear. Their Advocate. Their Voice. The ONLY way I’m going to properly take care of my sons’ is to stand firm in my resolve, listen closely to my instincts, push-push-push on the doctors, and do what needs doing regardless of the cost, effort, or drain on myself.
Today I just began to feel the cost, effort and drain on myself, and it scared me and brought me low.
Today, L and N from church came to collect the groceries from my home that we can no longer eat. Two full ice-chests, one large laundry basket full, and 8 – or was it 9? – grocery bags later, my kitchen is almost bare. I gave away hundreds of dollars worth of food because it was either a known poison or a suspected poison for my children.
I’m glad I gave the food to them; their family is heavy with children and I know firsthand that feeding those growing, hungry mouths gets costly. That’s not my problem.
My problem is that I doubt whether I should have given it away. Maybe he won’t be sensitive to corn. Maybe he won’t be as reactive as I’m feeling he will be in my gut. Maybe we’ll pass trials so fast I’ll have to re-purchase those foods sooner than I thought I would.
Maybe, maybe, maybe…
But I had a good reason for clearing my cupboards. My biggest fear right now is accidentally giving either of my children a food that hurts them. And if the food is there in my pantry, I may, in my exhaustion, forget to double-check the ingredients and feed them something they shouldn’t have.
Watching Mr. Happy vomit, go limp and lethargic, spending another night in the hospital, continually changing diarrhea diapers that I know are painful for both of my sons, is reason enough to rid my house of those foods because I hate experiencing those things.
With FPIES, every food trial that fails will set us back weeks in our journey. Not only must you wait to see if there is a reaction, which can take 2 weeks (or longer, for some kids), but you must then give their little intestines time to heal from the damage if the food is a fail. That can take 2-4 weeks, depending on the severity of the reaction.
I’m willing to walk that scheduled path to trial new foods, but when I do, I want to be absolutely certain of the offending food. I don’t want to be confused because there was a trace of citric acid in a can of peaches. I don’t want to make my child sick needlessly.
So while I know that some may shake their head in shock and dismay at the tossing of so much food and money out the door, while some may try to tell me that a food is safe when they haven’t done any research about either the food or the disorder, while I stress as I watch the medical bills file through the door and know that I’ll have to spend even more money than we can afford on pure ingredient foods and supplements, while I know that we will not be able to eat anything made outside of this house for at least two years, while I know that Thanksgiving and Christmas will be spent at my house – thus disappointing family we cannot visit or subjecting them to the same limited diet, I have no choice. I must return to that source of Mother-strength within me and the strength of God and forge a path through this forest, because my children deserve no less than everything I can give them when it comes to their health.
And anyone that tries to bring me down can just turn around and walk away. I have no time or energy to deal with idiots.