Endoscopy #2 - Preview

While upper endoscopies are fairly routine outpatient procedures there are risks involved. Please pray for Oliver and his Doctors when he goes in for his next (of many, many more to come) endoscopy.

Oliver's health hasn't been the best over the last little bit. He isn't sleeping well at night and he is back to throwing up fairly regularly. The worst part is he's not drinking very much of his formula. We told the doctor we were ready to perform another endoscopy and we have one scheduled for Dec 1st. We are excited about this date because it means we'll hit our maximum out of pocket expenses with the insurance and this endoscopy will cost us less than the last one did. In January all of that resets, of course.

What does this mean?

• A more accurate diagnosis. For his second endoscopy Oliver will be on his Proton Pump Inhibitor (PPI) which is an important condition for an actual diagnosis of EoE. PPIs are commonly prescribed for acid reflux. Acid Reflux can weaken the esophagus and result in the presence of some eosinophils in the esophagus - usually a very small amount. In order to rule out reflux as the cause for the eosinophils found in the last endoscopy Oliver has been on a PPI ever since. I hope we'll be able to take him off of it after the next scope because long term use of PPIs can have some negative side effects. It's a difficult dance because it is very possible and quite common for a child to have both EoE and some type of GERD. If there are no eosinophils in the biopsy of his esophagus (this would be good news, mostly) we won't know if it is because of the PPI or because of the diet change. If there are eosinophils we can be sure that he has EoE but we still won't really know if he needs the PPI. The one thing we will know is that he is still reacting to something. It could be food or environmental, but most likely it will be a food.
• A snapshot of his current condition. Oliver has been off of his Corticosteroids (the flovent) for quite a while (which is why we think that his symptoms have returned). This is important because the steroids not only mask the symptoms but also can prevent the formation of the eosinophils. If he were on the steroids the results of the biopsy wouldn't accurately inform us as to whether or not his diet is helping his condition. Since Oliver doesn't communicate well with us the results of the biopsy are very important.
• A tool to plan the next stage of treatment. Alison and I suspect that Oliver's diet still includes some food(s) to which he reacts. These symptoms were masked when he was taking the steroids but now that he is off of the steroids they are manifesting themselves. The results of the biopsy will confirm or contest this hypothesis.

What do we do if he scopes clean?

First, this is not the outcome we expect. In many ways this would be good news, but it also comes with complications. First we have to remove the PPI and scope again in a couple of months to determine whether it was the PPI or the diet which caused the reduction. Either one would be a great thing. Knowing which one it is would be an even better thing.

But, if the eosinophils are gone, why is still irritable and throwing up? This would open up a new mystery.

What do we do if he still has eosinophils?

This is the big question, what to do next? We will need to eliminate more foods from his diet if the biopsy reveals eosinophils in the esophagus. Which foods?

• Our GI has proposed we do another round of RAST tests to see if Oliver demonstrates a sensitivity to anything new. I don't like the idea because RAST testing is considered the least effective of the three allergy testing methods in identifying foods which have a non-IgE mediated reaction like EoE. I would prefer skin prick testing, or better yet, atopic patch testing.
• Another option is to simply remove some popular "offenders" like corn and beef. This wouldn't leave much for him to eat.
• The most drastic action is to remove all proteins and put him on a pure elemental diet. This is tempting only because it would increase the likelihood that insurance would cover the costs of his formula. We really don't want Oliver to have an aversion to foods so we would like to keep him eating some foods if we can, but we also acknowledge that many EoE patients end up on a pure elemental diet at some point, either as a tool in identifying "safe" foods or because they haven't found they can tolerate any foods at all.

What do we do in the meantime?

We want the endoscopy with biopsy to provide the most valuable set of information possible for us. In order for this to happen we need to make sure Oliver is on his PPI and off his steroids. Also, we need to be super vigilant and make sure he doesn't eat any of the 7 foods we have eliminated. (Milk, Wheat, Soy, Egg, Peanut, Chicken, Beans) If he were to sneak a Cheez-It from his brother during the week before his endoscopy, this would greatly reduce the information we can learn about his current diet. Strict adherence to his diet leading up to his endoscopy is really important. Too bad Oliver doesn't understand that. Hopefully his brothers do.

The Mother of All Food Allergies

EoE has been called by some the Mother of All Food Allergies but it is so different from "normal" food allergies. The mechanisms which cause negative effects which we normally associate with allergies are different for EoE than they are for EoE. What does this mean?

Up until now, our allergist has only performed RAST (blood IgE) tests to determine to which foods Oliver has a sensitivity. The RAST test is moderately effective in determining which foods may cause a typical reaction in patients with normal food allergies. These tests tend to deliver false positives and can be followed up by food trials to determine clinical results. The RAST test generally is not used to determine foods which trigger EoE reactions because it delivers too many false negatives. Skin Testing and Patch testing have proven more effective for determining offending foods for EoE.

So, for now we follow the diet proscribed by the RAST tests and Oliver doesn't eat any milk, wheat, soy, egg, chicken, peanut, or black beans - or products with any of those ingredients. Hopefully after a follow-up endoscopy we'll know whether we have eliminated enough.

• A clean endoscopy would mean we have eliminated all the offending foods. We would be able to then trial some of the foods we have removed to find out if he really can tolerate them or not.
• Poor results will mean we have to identify some other foods that may be causing problems. This doesn't mean that the ones we have removed are offenders - some of them may not be but we can't really try adding any foods back in until we have a symptom free esophagus to work with. -- Unfortunately this is what I fear will happen and it will be even longer until we can determine of what Oliver's diet will consist.

Next time we see the allergist I'm going to ask him about patch testing. At the very least I think it will be necessary if his follow-up endoscopy (to be performed at an undetermined future date) has negative results.

Going to the Allergist

Yesterday was our first post-diagnosis visit to the allergist (to any doctor, actually). We are not sure how much we really like this doctor, but he seems to be fairly knowledgeable about EoE and I feel like he genuinely cares about Oliver. He suggested we use swallowed budesonide (normally an asthma medicine that is inhaled). This would help get rid of the eosinophils in Oliver's esophagus and hopefully eliminate any pain he is feeling and thus allow him to eat and gain weight! He cautioned us that this isn't a cure, simply a band-aid of sorts. Initially, he had us using a nebulizer to administer it, but this morning he called us to tell us about the budesonide slurry a mixture of budesonide and splenda that the child drinks. We may have to try that if Oliver continues to refuse to sit still for the nebulizer. I am just concerned that he may not willingly drink the slurry.

He also sent us for a few more RAST tests to see if we should be eliminating more foods. He really wants us to see a nutritionist and thinks that elemental formula may be in our future.