Relief and Heartache...... all so bitter sweet

Just 3 days after Hayls upper and lower endoscopies the GI called to give me the first set of biopsie results.

My heart skipped a beat, and my mind started to race. I wanted to know if the results confirmed an EGID. I was hoping it would and yet I was hoping it wouldn't. I didn't want her to have an EGID but at the same time I didn't want us to have done one more test with no answers. I didn't want to have one more failed food trial and still no diagnosis.

Sadly the result is Hayls has EGE (Eosinophilic Grastroenteritis) . My heart sank because any EGID is a life long illness and for some it consists of a very limited diet. Some people cannot have any food but elemental formulas. EGID's in themselves are rare but the type she has is even more so. The GI said our approach thus far with food trials, medications and trying to achieve gut homeostatsis is great. He fully agrees with the path we are traveling on and seems to be supportive of what we have planned ahead.

Then comes the relief side of it. The relief that we have a diagnosis and now we have to fight just a little less to get special order medications for the kids (e.g. they cannot use regular tylenol or motrin so I have to get them compounded) and the help they need for the various ways these food allergies affect their lives.

My mind is still in a fog a week later trying to process everything. Trying to find the missing link for possible gut healing for the kids.

I still have so many questions, so much unknown.

Sometimes the biopsies even though they have eosinophils do not necessarily mean the person has an EGID, but the GI looks at other things such as the lining of the digestive tract and a few other factors. Well (besides the fact that her eosinophil count was very high for eating food for only 4 days the week before her tests) Hayls fits everything and so does Heath. When Heath is a year old we will decide when he will be scoped to specify his type of EGID.

As a family we still have hope. Hope of maybe one day calling this a bad dream or hope of just finding some food they can eat. Either way it is hope and we do the best we can to move forward one day at a time.