Bryce had his bi-annual trip to the pediatric allergist at U of Mich. He sees a GREAT doctor and we had an interesting appointment.
The short version is that the pedi-allergist isn't ready to jump in and start testing Bryce for more food allergies, which is standard with an eosinophilic esophagitis (EE) diagnosis. The allergist pointed out that as Bryce is already Top 8 food allergen free, he's already on the diet that a new EE patient would likely follow. He already had emailed the pedi-GI regarding the diagnosis and hadn't heard back.
The pedi-allergist is wondering if maybe the course of treatment should be changed. Should maybe Bryce be put on a reflux med? Untreated reflux can cause eosinophils to show up in the esophagus. Maybe Bryce's EE is as "controlled" as it's going to be is another thought the pedi-allergist had. He also wanted the pedi-GI to get to the bottom of Bryce's long-standing "diaper" issues (no pun intended!). He agreed that putting Bryce on a daily dose of Immodium (pedi-GI's solution!) to help his problem is NOT an answer. He wants the pedi-GI to consider a colonoscopy.
The allergist also cited that Bryce's growth/size are not typical with EE. I will politely disagree with him on that one. It takes a lot of "work" to make sure Bryce gets substantial calories daily, and as recently as last September, he had an unexplained 2lb weight loss. Something's not quite right there. I think you CAN be of good size and still have EE/reflux, especially considering that after that weight loss we started tracking every single bite Bryce took to figure out how many calories/day he WAS eating and then to increase them to gain that 2lbs back. Bryce at age 3 is on par with his brothers at age 3. Bryce is .5 inches taller than Brendan at 3 and 1 pound heavier than Brett at 3. So that's all good.
So where does that leave Bryce and his new EE diagnosis? At this point, we're waiting for the allergist to make contact with the GI doc for some clarification and discussion. Bryce stays on his swallowed Pulmicort (which is going down much better!) and will stay off his Zyrtec pending allergy testing.
Bryce gagged yesterday and threw up his entire lunch. EE? Reflux? Who knows. I'll keep you posted.
I agree with the part of putting him on a relux med. Will is on a Prevacid compound and that has worked best for him so far.
ReplyDeleteI don't understand why he won't do further testing. Just because he is already free of the top 8 allergens doesn't mean that you want to keep him that way forever. Maybe you could add more back in faster if he did the testing?
Does he think that maybe it was a misdiagnoses and that he doesn't have EE? I haven't had good luck with allergist in the past. They never seem to quite understand EE in my opinion.
I know how it is when people write things off because he 'looks' good etc. It is a lot of really HARD work to make sure that they do. Will has a feeding tube so I have complete control of what goes in and how much and he still loses weight a lot. Just because you can put food in doesn't mean it stays in.
Do you have another endoscopy coming up? I hope this all gets figured out quickly for you. Keep us updated!
He was on reflux meds until about 26 mos. He had horrible reflux! I still think he's reflux-y, and the gagging on foods and the throwing up yesterday definitely point to a problem.
ReplyDeleteHe just had his 2nd scope 2 wks ago.
I do think the pedi-allergist "gets" EE---BUT, it's not his focus. We see the docs in teh EE clinic in May, and will find out the plan then.
Hi Dorothy,
ReplyDeleteI just stumbled upon your blog and am excited, yet saddened, to see another local family struggling with EE. I also have a 3 year old son being treated for EE and have always wanted to find another mom to swamp tips and war stories with. When you say your child has Eosinophilic Esophagitis people look at you as if to say "WHA"? In reading through your comments, it's amazing how similar your experience has been to our own. Prevacid, Palmicort, not knowing if your child is just reflux-y or having an EE flare, negative first biopsy. We live in the AA area and am thinking of switching GI docs to a UM doctor (current peds GI doc is at Beaumont). Would love to chat! My email adress is kristin@blake-thomas.
Kristin--I'm so glad you found me! (seriously, you just stumbled across my blog?!?!!) I'll email you. I can't believe you drive to Royal Oak from AA...I'm closer than that and I *hate* driving there!!!!
ReplyDeleteAccording to standard treatment if a child is suspected to have EE they should be treated with a PPI regardless to rule out reflux. My son (9) is on 60mg of prevacid a day. (However, he has had a ph probe done showing that he has significant reflux and it is all acidic) I do agree with "The Three of Us" about the allergy testing. If you are going to do an elimination diet and you are already doing the top 8, you should be sure that there aren't any others or that he hasn't tested positive to anything else. When we started the elimination diet with my son he was just taken off the food that he tested positive to. After that did not put him into remission, then we added the top 8. When he failed that also we opted to go elemental.
ReplyDeleteHe is a healthy, average looking child as well. Not all children with EE have failure to thrive. However, he does go through spells when he will lose weight. Sometimes the specialists tend to look at the their current weight compared to their current height. That does not show a trend. Even if they are fine for their height, if their curve is falling, it is to be concerned about.
I am so sorry that you are having to deal with this. It is a very frustrating disease that deals with a lot of trial and error. We all learn as we go. Good luck with the appointment in May.