Endoscopy #4, Soy, and More

When Oliver was first diagnosed, I found several blogs written by parents of EoE kids. I remember being very frustrated by the fact that most of them were not updated very frequently! I've since learned that with many (most?) patients, things just don't change very often. Once we got Oliver pretty well managed, there just really wasn't much to report on. That said, I have been a bit of a procrastinator when it comes to updating, and there is a few things to mention from the past 10 months.

Oliver had his fourth endoscopy in April. It looked great. We got the best visuals we've ever had and the biopsies looked good and were eosinophil free. This meant that soy, which he had been consuming for the past six months could now be considered a safe food. Because of this added nutrition to his diet, we started to wean him from the EleCare. I say wean, because he was very attached to drinking it! We could have pulled it cold turkey, but that would have been hard for us all and we had a few more cans to use up.  I kept giving it to him while he was trialing the soy just in case soy failed and we needed to keep it in his diet to fill in any gaps.

We did blood testing and skin prick testing with the allergist and got the okay to trial chicken, peanuts, and almonds. I was hoping for beans and Oliver was hoping for oats, but neither one of those got the allergist's okay because he was showing up positive for them on the traditional allergy tests and there is no use trying a food that might give him a "typical" allergic reaction (for more on the difference between EoE and IgE allergies, see this post). I wanted almonds because I wanted him to have another milk source, and peanuts were all clear so we added that to the list.

We started with chicken, and though we had no very obvious symptoms he started constantly asking for food. He was eating non-stop and I *think* he was again confusing pain for hunger, and it's also possible that eating would temporarily soothe the pain (I've heard from adult/older kid patients that that happens). We pulled chicken and that seemed to stop. I am now afraid to do another trial because it's just so hard to know what foods are pass and fail sometimes! If we try all three, and we get a bad endoscopy, we have to assume all three are not safe because we really don't know which one or two it could be. On the flip side, if all looks good then all three foods become safe and we added three foods with one endoscopy which is quite efficient!

We have since moved to a new state and have yet to set Oliver up with new doctors, so we really don't have a plan for the time being.

Until next time...

Endoscopy Results, Allergy Visit, and No More Corn

The post title pretty much says it all, but if you want some more details, read on..

Oliver had biopsies with 20+ eosinophils in them (others had just a few). 20+ is high enough to diagnose, so that's not really a good thing. However, the gastroenterologist was not concerned about this, because he saw it as an improvement (an improvement over his initial endoscopy, but not over his second one, I should have called him on that, but I didn't). Jordan and I aren't satisfied with these results, and crossed fingers and toes that the allergist (whom we had an appointment with just days after we received the results) wouldn't be satisfied either.

Our allergist seems to know his stuff, but he's very much a man of few words. He looked over the results and then suggested skin prick tests. The skin tests showed a positive reaction to corn. So we pulled corn from his diet. This has proved to be a tricky one because it involves removing foods that have always been safe for him, but he's doing quite well with it. Probably because he's still very much in a "out of sight, out of mind" stage, so if we don't have it (or it is hidden out of view), he does very well when I say "we don't have any of that". I have explained to him that he can't have corn anymore,  but he just started telling me that things don't have corn in them, so I've found telling him we don't have something (and tossing a few things so that can be true) works best.

Almost immediately he started sleeping better. It seemed too quick to be linked, but it's hard to know for sure. He's been sleeping very poorly for the past two months or so, and it was so nice to be able to go the entire night without him waking up and crying! After a few days, his appetite also improved. He's been consistently eating well for the past five days or so. Though his weight gain has been okay, I've still been very worried about his lack of eating (and drinking his formula) over the past very long time, so it's nice to seem him eating! Again, pretty quick changes, so it's hard to know if it's connected to the corn removal or just a fluke.

We'll follow up with his allergist in six weeks and go from there.

Endoscopy #3

Oliver had another endoscopy earlier this week. We've added a few foods to his diet since the last one, so we wanted to check to see how his esophagus was doing with the new foods.

His last endoscopy was done in December of 2010, when he was 18 months old and still young enough that we didn't feel like we needed to go to great lengths to explain what was going on. Now, he is close to three years old, so we felt like he needed to understand that this wasn't going to be a typical doctor appointment! He did much better than we could have imagined. I think the fact that it was so early in the morning (we had to be there for pre-op at 6:30 am) helped, because he seemed to be too tired to cry when they wheeled him back! He did wonderfully coming out of anesthesia as well.

Visually, we are still seeing the same furrows in his esophagus that have been there during the other scopes (see this link for a picture of furrowing, a normal esophagus would have a smooth appearance).  We also think we see some white plaques in the pictures given to us, be we certainly don't know for sure. Though this damage is caused by the eosinophils, its presence doesn't automatically mean that he has eosinophils currently present in his esophagus. We, however, are concerned that the damage has not at all gone away since he supposedly had been eating all safe foods for a little over a year. Our reading and research would lead us to believe that in such a young child, the damage could be healed by now.

Several biopsies were taken, as having a pathologist look at those is the only way to know for certain if there are eosinophils present. The eosinophil counts from the biopsies will give us guidance as we choose the next steps for Oliver, and we should have those in the next few days.

Better Than We Thought

Oliver's doctor called with biopsy results and surprisingly enough, they are good! He's down to 15 or less eosinophils whereas before he was at "too numerous to count".  The continued furrowing is just due to the fact that his esophagus hasn't healed yet (and that may take awhile).

This means that we're doing a good job of keeping him off the foods that make him sick. I have this nagging feeling that there is still one thing we are missing, but at the same time I feel comfortable staying along this path for the time being as long as Oliver is not loosing weight and seems generally happy. On the flip side, chances are good that he's off some food that he doesn't need to be. His doctor suggested waiting several months before trialing foods just to be sure he stays okay. We didn't discuss if we wanted Oliver to be at zero eosinophils before trialing new foods, but that's clearly something that we don't need to decide in the immediate future.

I asked about the continued vomiting and irritability and the doctor said that more or less, his body just remembers when it really did hurt to eat and responds in such a manner. As for the irritability, he's a kid. I still really think he's kind of an abnormally cranky child. But until he learns to tell us when he's hurting, we'll not know for sure.

Endoscopy #2

Yesterday, Oliver had his second endoscopy. Everything went wonderfully (despite a slightly delayed start) and biopsy results should be back early next week. We wanted this endoscopy because we suspected that he is still eating something that is triggering the EoE. There was no significant improvement in his esophagus - still plenty of furrowing.  Here's a good comparison of a normal esophagus and a furrowed esophagus. 

I very much suspect that this means we will be majorly tweaking Oliver's diet in the near future. This makes me think back to a year ago, when I began tweaking my own diet. His 6 months well child check-up was just a few days before Thanksgiving. The doctor took a look at his rash (eczema) and suspected it may be caused by the milk in my diet (since I was breastfeeding him).  If only we knew what we were really headed towards!

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.

Learning in Slow Motion

Dad here:

One of the most frustrating things about this disease is that it affects each person differently. What causes one patient to react won't affect another. It is like each EoE patient has their very own personalized version of the disease. I've read dozens of articles about EoE. I've attended the APFED Conference. I've done lots of research so I feel like I know a lot about the disease, at least as much as is commonly known (there is much that isnt' known.) The problem for me is I know nothing about Oliver's version of EoE.

It's been 4 months since Oliver had his first Endoscopy and was diagnosed with EoE. He's been through several different medications. We have eliminated 7 foods to which he may or may not have a sensitivity. Has it made a difference? Yes, he is definitely doing better but I want to know exactly which foods cause Oliver's version of EoE to flare up. I want another endoscopy to see if the changes we made have had a real effect. Everything moves so slow. I don't want to torture our little guy with constant endoscopies, but I want scientific data. I don't know with certainty that any of the foods we eliminated are causative with regards to his EoE.

I know it will take years to get Oliver to a stable state (or maybe he'll never be there - I've heard recently of allergies morphing) but it still bugs me. I tell people this all the time. I tell myself this all the time, but it isn't any comfort. The process is just too slow for my linking.

All I know for certain right now is: He had eosinophils in his esophagus 4 months ago. He develops a rash (eczema) when exposed to milk (orally or topically). When we eliminated wheat his stools improved. Topical Corticosteroids administered orally seem to make him feel better. I want to know more. I want the process of investigation and learning about Oliver's specific version of EoE to speed up, but there doesn't seem to be any hope of that.

I guess I should just be grateful we got a diagnosis so quickly. Many people don't receive an accurate EoE diagnosis for many, many years.

The Results Are In

Jordan called me today with the results of Oliver's endoscopy (I'm out of town with the kids visiting family). There was a bit of a delay in getting the results because our GI was out of the office and needed to sign off of them because they were abnormal, plus there was a bit of phone tag going on between Jordan and the nurses. Oliver does not have celiac. There was no sign of any damage to the lining of the small intestine. There was damage to his esophogus as well as numerous eosinophils. Our new diagnosis is Eosinophilic Esophagitis and I was told to completely remove wheat, egg, soy, and milk from my diet while I continue nursing him.

I can't say I'm surprised by this too much. For awhile now, I've felt like it wasn't celiac that we were dealing with, and I was pretty sure that the doctor was going to tell us it was something else instead. In some ways, I'm relieved, but on the other hand now we have something brand new to deal with and learn about. Some people want to know if it's a good thing that he doesn't have celiac. Well - it means we don't have to be so careful about all the random small things that contain gluten (but not necessarily wheat). While EoE is not something that one can outgrow, there is the chance that he outgrows some of his allergies (perhaps that ones that aren't triggering his EoE and are just IgE mediated). This diagnosis brings with it a whole new set of challenges, but I guess that small chance that some of his allergies may not be life-long is what makes this one a little bit better for me.

The Endoscopy

Yesterday was Oliver's endoscopy. The doctor was running late, thus we spent a lot of time waiting. We were taken back right away, but just to get a gown on him and get his weight. We were sent back to the waiting room and waiting with a baby who has had nothing to eat for over 12 hours was hard. Eventually we were brought back again and we were told what would happen and spoke briefly with the doctor - his pediatric GI. Jordan and I set off to find something to eat and when returned Oliver was done and in recovery. He was screaming and not happy and very much wanting to nurse. I felt bad that he had been like this for awhile, but they had our cell phone number so they would have called if too much time had passed before we came back. The doctor said that he saw signs of an allergic reaction in the esophagus and would have official results for us in a few days.

This morning he was throwing up and just generally not feeling well, but he seems to be doing much better tonight.