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.

We really really like our new pediatric GI

The same week with our Stanford appointments we met with our new GI. First off I just have to say we really like our new found team. Our pediatrician (who was stumbling around in the dark with us for a long time) helped us find a new allergist (who admits she knows very little about the non-IgE allergy world, this is a breath of fresh air for us, a Dr who admits she may have no clue :D ) who helped us find the GI.

He was on the kids files before we even met him. When we had met with the allergist a few weeks before she was actually consulting with him before our appointment. He waited until after we were done with the allergist and met again with her as we were done. We saw him but at the time had no clue who he was. He had joined our team before we even knew about it.

Besides him yawning through out the first 35 mins of the appointment he was great. Even though he was up to date with everything from our new allergist he listened to the histories.

He is convinced both children have an EGID. Some people would think this is extreme but all the symptoms fit a lower EGID. He listened to all our concerns and said he thought it was time to scope. I was relieved to have a GI who actually was as concerned about the children as we are. I asked for certain non-routine biopsies be performed to rule out secondary issues. He didn't even ask why, he just agreed! I almost fell off my chair. Our last 2 GI's were not like this, one had only agreed to do a scope because "Dominique is having such a hard time dealing with this" (of course this rubbed me the wrong way on many levels, my child is sick and you are ignoring it but anyways back to the new GI). He also accommodated our request to do the procedures in a few days because my mom was in town and could watch Heath. He then listened to our concerns about Hayls reacting to anesthesia medications and the colon prep. He willingly gave us alternatives. We didn't have to fight to get him to believe she could have a reaction to the surgical tape or anything else that we have had to fight to get Dr's to believe. He accommodated us and showed empathy.

On discussing the scopes he said that it most likely would not show anything because she has been on an elemental diet for so long and we are so careful with food trials. He said that would not change his mind about her having an EGID. Just that we have taken all the right steps and what we have done is mostly the right treatment for EGID. We knew all this already, but to hear it from a Dr was like some weight was lifted off my shoulders.

Since we have seen him I have sent many emails and he responds within a few hours and addresses my every concern. He has been better in the short few weeks than some of our Drs have been for almost 2 years.

Having an EGID is a life long battle, and it may mean being on elemental formula for life. It may mean only a handful of foods to eat along with this. It is grim but having a Dr assume the worse strangely makes it easier for us as a family because we have support. It feels better than a Dr saying "oh she'll out grow it by 1" you wait and that time comes and goes and your child still cannot eat any food. Then they say oh by 2, well we are just about at 2 and still only one safe food. So to have a Dr say I think this is the case and address all our issues and concerns is wonderful.

We still hope for the best but are cautious, we don't want to live in denial.