An update on Bryce is long overdue. It's been over 1 month since he had his follow-up scope and dealing with the pediatric GI department has been a nightmare, to say the least. Be warned--this is a bit rambling and not my usual "fun" post. If you're a follower of this blog b/c of my rockin' garden, there will be more of that in a few days!!!
First, the good news. On the biopsies taken, there were zero eosinophils (eos) found. This is a good thing, for certain. It means the Prevacid is knocking them out, so YAY. The other side of this coin is that the new diagnostic standard is to take a minimum of 5 biopsies at each site, and Bryce only had 3 or less at each site. That's a bit frustrating. Does this mean he had serious enough GERD to cause eos in his esophagus & they are now under control? Or does it mean the samples they took were clear of eos? Does he have EE anymore? Did he ever have it to begin with? We simply don't know.
Here's the other "good news": Bryce does not have celiac disease. yippy skippy. (heavy sarcasm there). As I've told his GI doc at least twice-maybe more-Bryce cannot have celiac disease because he does not consume (nor has he ever consumed) gluten. He was diagnosed allergic to wheat at about 7 mos and rye shortly thereafter and does.not.consume.gluten. The pedi GI not only took extra biopsies to "rule out" celiac, she had extra tests run. Tests that were superfluous and costly. Ridiculous. She says she saw evidence of duodenal flattening, which is consistent with celiac disease. Great. He CANNOT HAVE CELIAC DISEASE.
When I last spoke with Bryce's GI doc (over 1 month ago), she said he is "cured" of EE and that he should stay on the Prevacid. As to his chronic loose & funky colored stools, well, she had zero ideas. She called it toddler diarrhea (again). She wondered if he had bacterial overgrowth & wanted to put him on Flagyl again (ah, no thanks-unless you have PROOF, we're not interested in temping c.diff again!). Then she wondered if he was lactose intolerant. Really? Lactose intolerant? She suggested putting him on Lactaid. Seriously? Put my dairy-allergic child on Lactaid MILK? Evidently, none of the docs in the GI office read his chart.
Then she suggested that increasing his fiber might be a good next step. She said to add Benefiber to his diet. I was to increase his daily fiber to about 20 grams. Evidently, the average 3 year old requires about 10 grams of fiber, (the formula is age + 7), so doubling it should be sufficient.
Once again, it is clear that they do NOT read Bryce's chart. I googled the ingredients in Benefiber and am so glad we're big label readers here. The main ingredient in Benefiber is WHEAT. Really? His very first allergen noted was wheat. Wheat likely sent him to the hospital via ambulance once. Goodness-are they THAT incompetent?
I called the GI office the next day and spoke with the nurse practioner. She and I are not friends, let's just leave it at that. (the backstory there is that she suggested I give Bryce PEANUT BUTTER to make his c.diff medicine go down more easily. Really? Peanut butter to a peanut allergic child?) When I informed her that Bryce cannot take Benefiber b/c it'll cause anaphylaxis and her suggestion was that I ask the PHARMACIST as to what to give him as a fiber supplement. Really? I do not rely on a pharmacist to know ANYTHING about food allergy. That's not their job and I told the NP that it really was HER job to know what to suggest. Sheesh.
I then asked her what will happen if we reach 20 gms of fiber/day and there is no change. She suggested that 30 would be the maximum they would try to see if it made any impact. Fine. So I started logging Bryce's daily food intake and it's fiber content. Were we ever suprised to find out that on any given day he was ALREADY eating about 20 gms of fiber. Without trying! So I called the GI office again and they said to try the 30 grams. Fine.
Two weeks later and the increase in fiber really made no change--except make us crazy with having to track what he ate and have to FORCE him to eat things when he wanted other things. Total nightmare! I call the GI office AGAIN and hear back from a regular nurse this time. She tells me to stop the fiber increase and it's toddler diarrhea and that's that.
Really? So after I lose my cool with her, she tells me the Dr will call me back. Well, the Dr didn't call back, and then she called the landline when I'd requested she use my cell, and left a message that she'd called back. She didn't.
I called the pedi GI office AGAIN today after changing yet another orange, liquidy, nasty, room-clearing diaper. I am long past being nice. I'm officially Mama Bear and I don't care what I have to do or say to get my kid some help. My message today was that I wanted to know what the plan was for Bryce and if they didn't have a plan, where were they going to send us for a 2nd opinion. I also let them know that we believe that because Bryce "no longer has" EE, they are not interested in his case. EE is the HOT GI/Allergy diagnosis these days and University of Michigan is trying to run their own EE clinic. Bryce doesn't have EE, so he's not worth studying; that's how Brad and I feel.
She called back a day later, she told me maybe he has bacterial overgrowth and after listening to me make it clear that they WILL do SOMETHING, she told me she'd talk to Bryce's previous GI (he's on his third one!) and call me back.
She never did.
I haven't read all of your posts, but after reading this one--I feel your pain. My son went through much of the same for over a year when we finally got in to see the team at Cincinnati Children's (we live in Chicago). It was a life-saver of a trip. They helped un-snarl all of the mess made by other gi docs. Best of all, my son did not have eosinophils in his work up...so they actually changed directions! We were scheduled for a week of tests and they actually met us at our apt on the second day and changed all of the following few days of appointments! They promised to keep our case despite not having current evidence of EE. Better than that they figured that there was likely a tie to our son's appendix!!!! Saw a surgeon there that week and had other work ups to rule out the worst. My son had relief one month later whent they removed his appendix as a diagnostic process. Fixed good as new as far as pain and bowl habbits. Turns out as we've added back food he does indeed have EE and the current culprit is dairy...though we have yet to do the soy challenge and still have it eliminated from his diet. He did pass other challenges however! CCED is an absolutely wonderful hospital and we have compliments for every care giver we've seen! Trust me, I had no compliments for my prior allergists or gi docs.
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