Come out come out wherever you are!!!

The more I research, the more soy I find. I find it in things that should never contain it in the first place.  It’s in our soaps, our baby foods and even in the wax that is put on our fruits and vegetables can contain soy. I have worked so hard to rid Carter’s diet of all offending foods.  I have taken away all the foods that I know to be bad. I have spent countless hours reading food labels and coming up with new menu ideas.  I have bought all the right soaps and lotions.  Yet, it doesn’t seem to matter.

We are still dealing with random and unexplained diarrhea diapers.  They only happen once or twice a day, but they burn his skin and cause him pain. As soon as I pick him up and tell him it’s time to change, he starts to squirm. It is not a playful or even a stubborn squirm.  It is the all too familiar, “Mom, this is gonna hurt” squirm. He cries and pulls at his legs while I wipe him. Once he is clean and gets his new diaper on, he’s back to his happy self.  I wonder if this is our “normal”. Is this how he will live his life? Is there really nothing more I can do?

Carter had some cantaloupe not too long ago. I thought this was a safe food for him. I was wrong. Within a couple hours, he was screaming in pain. It lasted for an hour before he finally went to sleep. The next morning his diaper was full of cantaloupe with small streaks of blood. 

Blood. It is never supposed to be in your child’s diaper. The first time it happened, Carter was two weeks old. It was several small streaks.  At it’s worst, Carter was about 9 months old. I opened his diaper and it was full of bright red blood. Raw, hot fear filled my body. I have never felt anything so strong. I cleaned him up and looked for the source, sure it was just a case of bloody diaper rash. There was nothing on his skin. The blood had come from the inside. I spent the rest of the day staring at my baby, waiting for the problem to worsen. We were lucky. It never did. But it ignited the fear deep in my soul, a fear that clawed it’s way through when I changed that cantelope diaper.

I am not sure whether it was the cantaloupe or a crumb off the floor.  I have noticed that whenever I reintroduce a food into Carter’s diet, even a food I thought to be safe, he has some sort of reaction. It is not a severe reaction, but a lesser one involving bad diapers and screaming pain.  It seems as though his system is rejecting all foods other than those he has on a regular basis.  Is this initial reaction normal for an FPIES child? Should I push through and see if the reaction worsens? I cannot, in good conscience, do that. If his body is rejecting the food in a small way, why would I push to see if it’s just an introductory phase, risking a full blown reaction?

I do not like the helplessness that has overwhelmed me. These are the moments where I feel that I will never help my little boy to be completely pain free. I will never know exactly what causes his pain or how to help him manage it. These are the moments where I think that I’ll be sending him to college with a list of safe foods he can eat. I know that in these moments, the best thing to do is allow myself to feel these feelings and grieve through this because at the end of it I will find the strength to keep moving through this maze and find a way out.