A mother's heartbreak

There is nothing worse than a sick child. That is what I had always believed, until this year when that statement was proven wrong. A sick child is truly an awful thing, but as long as you have the tools to help your child feel better at least you can do something for your child.

These last couple of years have been a maddening cycle into an abyss of powerlessness. Elimination diets that seemingly do no good, a prescription that seemingly stops all ability to digest food, a child that does not follow the diet plan, thus making it impossible to know if the elimination diet is actually doing any good. An overwhelming sense of powerlessness, helplessness, uselessness pervade your very core while your child screams in pain, retches, and vomits endlessly.

Eosinophilic Esophagitis. This is almost as hard to say as it is to like. I have come to loathe this diagnosis almost as much as I was thankful to find an answer at first.

It started in the summer before second grade. He was throwing up for no discernible reason. We were at the doctor’s office every other week trying to find out why. Blood tests for everything that the doctor could think of, and everything that the doctor could find in medical journals to try. My son, who has always been a bit skinny anyway, lost 7 pounds.

We went to a gastro-enterologist during his second grade year. He was still losing weight. He stopped growing. More special blood work. Still no answer. He showed three out of four markers for celiac’s disease, but not the one that really mattered. It was time for an endoscopy. Finally we got the answer. It took us 9 months. My son got down to a BMI of 13.

He was put on a high dose of prilosec. Two pills daily, every day. This was supposed to fix everything. Except it didn’t. The medicine killed off so much of his ability to create stomach acid that he was not able to digest any food. He was still vomiting all of the time, still not growing, and he has a new symptom… non stop pain that causes endless screaming. Next steps.

Find the food or foods that his body doesn’t process well and he will be fine. Sounds easy, right? First step: Milk. Still screaming endlessly. Next step: soy. Do you know how much food has soy in it? Jesus christ! Okay… deep breaths. Soy is gone. Screaming continues. Next step. What is our next step? I can’t even think. Okay… eggs. He doesn’t even eat eggs. Fish. Fish is easy. Gone. Screaming continues.

What do you mean he’s eating milk again? We are supposed to be giving up milk. Uhg. Okay. Go back to step one. Give up milk. Yes. All milk.

Six step elimination diet. No milk. No soy. No nuts. No eggs. No fish. No wheat. What is left for him to eat?

The doctors make it sound so easy when you speak with them. Give up the offending foods and your child will feel better. In my experience, however, they do not actually understand what they are speaking about. When you have a ten-year-old who only wants to live a normal life there is no such thing as easily giving up the 6 most common allergy triggers. And even if we do, it isn’t even a guarantee that this will solve his issues. In the meantime, he screams in pain, a pain that I cannot solve. I am supposed to be able to fix everything. Right now, I just can’t. From the onset of symptoms until now, we have been on this journey for just over 2 years… for an eternity. I will keep looking for that magic solution, that magical food or foods to give up that will fix my son.

After all, I am his mother, and it is my job to fix this.