Before making steps to move forward with Elianna's diet change and deciding not to give her certain foods or treatment, there were some final possibilities that needed to be eliminated. At this point she had never been put under for an upper scope or biopsy. Her continued reflux, and 18 month history of it, concerned me that there was scar tissue or permanent damage in her esophagus. Thoughts of hernia, possible Eosinophillic Esophagitis, and possible sugar intolerance, encouraged me to take the risk in an effort to eliminate these final issues that might complicate her diagnosis of FPIES.
I say risk, because entering the hospital is a risk for an FPIES patient. Most of us are aware of the fact that supposedly sterile hospital environments are actual full of funky bacteria, and poor quality food that lacks nutrition. What the majority of people in the Western world are NOT aware of is the ingredients in medications and adhesives. This includes medical professionals and anesthesiologists. Ingredients in adhesives include corn which has been used to replace latex. Ingredients in medications include corn and soy, just to name a few.
Ellie was to go in for an upper esophogeal scope and biopsy, and a colonoscopy and biopsy. This required her to receive anesthesia, all of which was routine and not a big deal to most. However, the medication that is used to put children under is called propophyl. It is the only anesthesia with an anti-nausea medication added, which is why it is used with children. It helps with the after effects and the efforts to make it less traumatic since the chance of them waking up to a barf bucket is considerably less. The problem with propophyl is that it contains egg ingredients and soy oil.
Elianna has not had egg yet, but she has had soy, and it has resulted in an FPIES reaction (which is the equivalent of anaphylaxis). Most people who have anaphylaxis to a food would tell you that there is no way they would risk being exposed to that food while going into surgery or a procedure that required anesthesia. And the medical community recognizes this risk and would make alternative arrangements. The risk of someone going into anaphylactic shock while being put under anesthesia is not a scenario they like to risk. Unlike traditional anaphylaxis where a person's throat swells shut and they can not breath, Ellie's FPIES is a blood reaction that sends her body into a state of inflammation and shock, and can make her blood pressure irregular.
Many FPIES children have had this procedure done multiple times without problem. But a few have not. And Ellie's added corn intolerance and continued respiratory issues were enough to make me want to vomit. My research and conversations with other FPIES mommies told me there were alternatives to the soy based medications, and that going into things aware should decrease the risk of problems significantly. I took a deep breath, and got on my knees again. Our God is not a God of fear.....but I didn't realize yet that this was the next lesson He was wanting me to learn.