Yesterday, Matthew developed a rash about an hour after Day 4 of our beef trial. After the initial bedtime, he screamed every hour until midnight. Those high-pitched screams, even as we held and rocked him. We usually try not to pick him up from the crib too much and over-stimulate him, but since all the vomiting, we have been trying to calm him. Tears fell down both of our faces as he wouldn't calm. And then I thought, no one can help us.
FPIES, as with other severe/rare medical conditions, takes both a physical and an emotional toll. When people see Matthew, he looks perfectly normal and happy. But they aren't there when he is in pain from repeated vomiting or slumps on my shoulder from sheer exhaustion afterwards. They aren't there as we make yet another trip to the doctor or Emergency Room. They aren't there as I spend all my free time scouring the internet to try to find an empirical way to choose his next food and as I lean on other FPIES families online for support. Even though it's early days, I am angry, frustrated, confused and exhausted enough to just shut down. It would be easier to just say "he has allergies", but I still feel that I need to explain FPIES, not only to keep my child safe as he grows, but also because I care about increasing awareness.
FPIES, as with other severe/rare medical conditions, takes both a physical and an emotional toll. When people see Matthew, he looks perfectly normal and happy. But they aren't there when he is in pain from repeated vomiting or slumps on my shoulder from sheer exhaustion afterwards. They aren't there as we make yet another trip to the doctor or Emergency Room. They aren't there as I spend all my free time scouring the internet to try to find an empirical way to choose his next food and as I lean on other FPIES families online for support. Even though it's early days, I am angry, frustrated, confused and exhausted enough to just shut down. It would be easier to just say "he has allergies", but I still feel that I need to explain FPIES, not only to keep my child safe as he grows, but also because I care about increasing awareness.
Anger and Fear
Why does my child have to suffer? Why can't there be a test for this, as with regular allergies? What food will hurt him next? I feel like there's a wolf lurking around every corner with every food trial. I wanted to enjoy photographing and watching him taste new foods and textures but instead with every spoonful I cajole into his mouth, I am potentially feeding my baby a world of pain. Why must I be the one to cause his suffering? Will he forgive me for it? Will he develop food aversions and require feeding therapy? I am so afraid to take my baby places and do activities with him outside the house in case he has a reaction. And yet, staying inside the house all the time might only worsen the situation.
Frustration
I abhor trial and error to solve a problem. And I especially hate when there is no correct or accepted method to go about solving the problem. I want to help my baby, but he's too little to tell me where it hurts. There's no way to know for sure if the screaming is from pain, or if the rash is from food. Not only are studies on FPIES few and far between, our understanding of it is mostly limited to describing it, and we are nowhere near detailing coping with it as families. There are no concrete answers. I feel like am treading water in a stormy sea - desperately trying to cling onto something, and finding nothing. Most frustrating of all is that, if Matthew will react to one or many items, it doesn't change the process. We must trial foods as if he will react to all of them.
Confusion
I am overwhelmed and perplexed by FPIES and because so little is known about it, I often get conflicting answers about how to go about dealing with it, even from doctors. From selecting the next food or length of time for a food trial, to knowing if a food is really safe, to eliminating foods from my own diet, to explaining symptoms, my questions only lead me to more questions. Matthew started arching his back from the newborn stage and I asked my doctor if his tummy could be hurting. I asked her again at 7.5 months after he'd been diagnosed. Her answer was exactly the same "Who knows? Babies cry. Even 2 year olds arch their backs and cry".
Exhaustion
From the night-wakings every hour for many months, to the hyper-vigilance after ingestion of a food, being afraid, anxious and on edge are taking their toll on our little family. Despite explaining, over and over again, perhaps I have to accept that people can't really understand our struggle and overwhelming sense of daily dread unless they've walked in our shoes. It's also exhausting to never have any reassurance, because nothing anyone can say or do will reassure me in the long term. I feel so hopeless today.
I feel so terrible that this is such a doom-and-gloom post. I wanted to be more positive. I thought of ways to try to spin this, but in the end I decided it would be doing a disservice to other newly diagnosed families out there who might be feeling the same thing. This is the truth. This is real. I hope this is normal.
I do hope it will become more manageable, but for today, this is me.
I feel so terrible that this is such a doom-and-gloom post. I wanted to be more positive. I thought of ways to try to spin this, but in the end I decided it would be doing a disservice to other newly diagnosed families out there who might be feeling the same thing. This is the truth. This is real. I hope this is normal.
I do hope it will become more manageable, but for today, this is me.
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