I want to apologize for my silence these past few months. It’s been busy, tiring, and frustrating. My own personal journey has changed, and I’ve recently started the Ketogenic Diet, following the Ketogenic Dieters group on Facebook. I will make my own post with that journey, but I started September 11th and have lost almost 40 pounds. Thanksgiving and stress has slowed my loss down, but I’m down a lot of clothes sizes as well.
Anyhow, back to Chris. We had an emergency Endoscopy the beginning of October. He felt like something was stuck in his throat, and he couldn’t get it out. His old GI performed the endoscopy since he was still under his care, and when he came out he said that his esophagus was showing signs of inflammation and damage again, and he had visible signs of damage in his duodenum (small intestine). He sent the biopsies to the lab, and then called me back about a week later. His eosinophil levels went up in his esophagus, and his duodenum was even higher than last scope. Nothing has changed, diet wise, so he was at a loss as to what to do. He wanted to start him on Cromolyn, which is a mast cell inhibitor medicine.
I admit after that phone call I was very frustrated. I did not want to put him on more medication. I did not want to just mask the symptoms. I wanted to figure out what was causing it. I emailed his Allergist, and she called me back on a Friday evening. She told me what Cromolyn was, and why she felt like it was necessary to start it. She explained that it can help stop his body from attacking everything and calm it down. She also threw out the MCAS (Mast Cell Activation Syndrome) possibility, which sounds exactly like all of his symptoms. After talking to her, I felt a little more confident but still very confused as to what to do. Do I do medication? Do I stick with the current GI, and cancel the new patient appointment with the new GI?
I went back and forth all weekend on what to do. I needed to figure out my options right away. I talked to a new friend, who is dealing with MCAS, EOE, and other related conditions, and she reassured me that sticking with the current GI was the best option for right now. He is very knowledgeable in EOE, in the correlation of EOE and other diseases (MCAS and Connective Tissue Diseases). I felt like I should stick with the current GI and give it a shot, and give him a shot, to try to fix this. We saw his allergist right before Thanksgiving, and she did a whole slew of blood work. The most confusing part is that his overall blood IGE level is continuously increasing, his overall blood Eosinophil level is increasing. His blood IGE for environmental AND food don’t show anything horrible, reaction wise, not enough to explain why his overall IGE blood level is increasing.
Right now Chris is still on his diet. He is taking Cromolyn 3 times a day. The Cromolyn made his stomach hurt worse, but it’s actually helping. When he misses a dose, we can tell, but I think he needs to be on it 4 times a day. Between his lunch dose and night dose, his stomach starts hurting and he often doesn’t eat dinner. That’s another thing. Since all of this started happening, he has been refusing to eat dinner. He doesn’t want to eat because his stomach always hurts. Every thing he eats makes his stomach hurt, which makes him refuse proteins. It breaks my heart, and I still don’t know what the best option is. I still wonder if taking away food for a while to give his body time to heal is the best thing to do, but I don’t want to. I do NOT want to do that to him, but I don’t know what else to do.
I’m still torn on if sticking with this GI is the right thing to do. I want answers. I want to know what’s causing all of this and I feel like nobody is really that worried about it. I feel like they’re both okay with the medicine working, which I am, but I also want to fix the problems. I want to fix what’s making this all happen. I need to have faith that God is leading us in the right direction. I feel like I’m missing something, though. I just want my poor baby to feel better. I want him to enjoy his life and to not be in pain all of the time.
Please keep praying for us. For him. For the doctors. For someone, anyone, to finally be able to help us figure out what exactly is going on and the best way to help him.