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...

A Long Overdue Update

Oliver has been corn-free for nearly ten months now. All the things I mentioned previously (sleeping better and eating better) are still happening, so although it's hard I am happy to have him off of corn! He has done really well with it, overall. We went all out and pulled all corn syrup and corn derivatives. Those things don't typically cause EoE reactions (because they supposedly have no proteins), yet it's not unheard of for a kid to not be able to tolerate them. We have kept dum-dums lollipops in his diet. They do have corn syrup, but are safe for a vast majority of EoE kids, even those with no other safe foods.

With regards to corn syrup, we had often wondered if he was reacting to ketchup. It's very likely seeing as every ketchup you'll ever find at a restaurant has corn syrup. Or it could have been the hot dog he always ate with the ketchup, who knows. But as we struggled to find a ketchup that would work (Hunt's unfortuntaly doesn't sell theirs anymore, but Kroger and Albertson's both have an organic store brand one), I recalled those times when I was wondering if the ketchup he was eating was making him sick.

From that point, we did something we maybe shouldn't have. We added a new food AND removed one food without checking things out via endoscopy in between. This means that should his next endoscopy show eosinophils, we won't know if the soy is a no go or perhaps the soy is safe and there is something else that he was eating all along that was the problem. Had we done the endoscopy after just removing corn, we would have known if he was "clear". Instead, we didn't go that route and just assumed that removing corn was going to give him clear (no eosinophils) biopsies from the endoscopy. Honestly, I thought that soy was going to be a huge fail and we'd no right away that it wasn't going to work, which was the main reason I agreed to the soy trial (it's what the doctors thought should be the next step). But, that didn't happen. He's been doing very well with the soy, actually. That doesn't mean things still don't look bad inside though! There's also the question of if he even knows what it's like to eat without pain, or if he's so used to stomach pain that it doesn't bother him anymore. Perhaps if you or I were feeling how he was we'd be visibly irritable to all around us, but Oliver may just be so used to it that it doesn't phase him. Who knows. Even if he is experiencing no pain, the eosinophils could still be wrecking havoc on his esophagus.

We will definitely be doing another endoscopy very soon. It's time to add another food, but we need to know for sure that it's okay to do so.

EoE according to Oliver

In honor of National Eosinophil Awareness Week, here's Oliver's definition of Eosinophilic Esophagitis

This was right before dinner several months ago. One of Oliver's brothers was asking if he could have a food, or we were just in general talking about food Oliver couldn't have, I don't remember exactly.

Dad: Do you know why you can't have that food?
Oliver: No
Dad: Is it because you have Eosinophilic Esophagitis?
Oliver: Yes
Dad: Do you know what that means?
Oliver: It means you can't have it.

And that, my friends, pretty much sums it all up!

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.

Six Months Later

Recently, my cousin was asking how Oliver was doing and then said that she should maybe just check the blog. Oops. That won't work if I don't write anything here!

As of last report, we were planning on starting Oliver on fish. I focused mainly on tuna, because it's easy to prepare. I didn't realize it would be difficult to find tuna that was not packed in vegetable broth (with soy). Seriously, next time you're at the grocery store, check the ingredients on a can of tuna and if doesn't have soy please tell me the brand! I lucked out because the Costco brand of albacore is soy free. He is doing quite well on fish as far as we can tell, except for an increase in urinating that seems to really strongly correspond with his fish intake.

His last GI visit was a few weeks ago and the doctor said he didn't see a need for repeat endoscopy unless symptoms pop up. That works for us for the most part. The only thing I worry about is that Oliver has perhaps gotten used to stomach pain, so it's becomes normal for him and as a result he wouldn't complain until things were really bad. He's getting a lot more vocal about everything, so hopefully he will let us know if anything is off.

We've also completely pulled him off his PPI. He was not showing any signs of pain on days he didn't get it (or on day two or three of not having it), so with the doctor's blessing we went ahead and stopped it all together. If he did have reflux along with his EoE, he could have possibly outgrown the reflux. If he did not have reflux, the PPI could have been just helping to keep the eosinophils under control (eosinophils like acidic places, so if the PPI is lowering acid, there would be less eosinphils), or perhaps the PPI was doing nothing at all!

Birthday Cake

Yesterday, Oliver turned two. When he was asked what he wanted for his birthday, he always said cake. I don't know where this came from. Perhaps his brothers have been teaching him the connection between cake and birthdays or maybe he remembered eating cupcakes at a few birthday parties back in March, or maybe he just always wants cake, birthday or not. I am so grateful that, this year, I could give him what he wanted!

I know how tricky this disease can be and the more stories I read, I realize that his list of safe foods could be constantly changing. When he repeatedly asked for cake, part of me was so sad because I knew such a simple request might be harder to fulfill on future birthdays. I am content with the fact that this is something we must just deal with day-by-day because we don't know what the future will bring. But this year, he had his cake.


In case you're wondering, it was this recipe and we all enjoyed it. I've come a long way with regards to my allergen-free baking abilities!

Bring on the Tuna!

Based on all outward appearances, Oliver continues to thrive. I hate answering the question of how he's doing (hate is really the wrong word, I'll gladly answer, you'll just have to be prepared for a strange answer!) because based on everything we can measure and everything we can see, he is doing so well. But there's still this nagging feeling I have that he is still hurting. Though, I will admit, as he throws up less (It's easily been at least two months since he last vomited) and swallows more (instead of just spitting food out) those feelings do lessen. And, right now I don't feel like removing more foods is really the answer, so we're stuck between a rock and a hard place until Oliver can communicate how he's feeling.

So, we trial foods. Though in the case of this first one, we're actually introducing a food that he's never had before and that he had very little exposure to via my breastmilk when he was nursing - fish. Yesterday, he had some tuna (because opening a can of tuna is pretty much the extent of my fish cooking and prep knowledge) and I plan on waiting a day or two to see if anything happens before giving him some more. I'm excited that he could possibly have a little more variety in his diet.

Doctor Update

We saw Oliver's GI a few weeks ago. He's very pleased with Oliver's weight gain. Jordan and I are amazed that Oliver is even gaining weight! He sure doesn't seem to be eating anything of any substance and his formula intake has dropped dramatically. But I guess until that is reflected in his weight, then he's okay.

We did switch up Oliver's PPI medicine. We went from 20 mg once a day to 10 mg twice a day. The hope is that by spreading it out, it will help him feel better throughout the day. Is it working? I think it might be helping with his late afternoon crankiness, but not his spit out vs. swallowing problem.

Next  up is the allergist next month in which we discuss re-doing allergy testing to see which food might be a good candidate for trying to re-introduce into his diet.

What's for Dinner

This month's issue of Family Fun magazine has an article called "Your Dinner Challenges Solved". I just laughed when I saw it, as if they can solve my dinner challenges!

When all of this started, I was cooking dinners that were free of all of Oliver's allergens because I was still nursing him and had to eat what he could eat. When I weaned him, I continued this mainly because I felt guilty that I woke up one morning and could suddenly eat without restriction. I didn't want him to feel singled out. Which was kind of silly at the time because he was just barely a year old and really didn't notice I'm sure.

I do have a few tricks up my sleeve. I would (and still do) boil regular pasta for us and rice pasta for him, and keep sauces with offending ingredients separate as opposed to mixing it in, and cheese became something that was strictly added to the top of your serving after the meal was plated. We eat enchiladas, he has just Ollie safe cheese on a corn tortilla. We eat pizza, and I pull out a frozen Ollie-safe tortilla and top it with Ollie-safe cheese. Same with pancakes or waffles, every now and then I make a bunch of allergy-free stuff for Oliver for the freezer and just pull some out as needed. Sometimes, I'll put aside some food for him before adding any offending ingredients. It's still very hard to come up with things that are easy for all of us to eat.

I've eased up a bit because I realize that Oliver doesn't care if he's eating something different so long as he has something he likes. Now I just worry about the older two. Unless I can absolutely guarantee that my older sons love what we are having for dinner, I make sure we all eat the same thing because I do not want them saying that Oliver gets something different so they want something different. I've worked too long to convince my kids that you eat what I make for dinner or you don't eat to have it go by the wayside now. 

So, even though I could just give Oliver a "dayia-dilla" (dayia cheese on a corn tortilla) every night while we indulge in whatever and Oliver would be happy, I fear that the other two would complain that they don't want what I cooked, but rather what Oliver has. Solve that, Family Fun!

Just Keeping On Keeping On

We've realized that we've hit a major stumbling block in Oliver's treatment. That is, his inability to communicate with us! When Oliver is being particularly cranky, we'll sometimes ask him if something hurts. He often nods yes and points to his mouth. We've tested this out on other occasions when we know what is hurting him (for example, when he bumps his head on something) and he'll point to the correct hurting body part. But, aside from pointing to his mouth, he can't tell us if he has a hard time swallowing food (his eating would indicate that he does), or if sometimes he hurts more than others. I feel like we can't move forward until either something drastic happens (as in, he starts vomiting frequently again or starts to loose weight) or until he can better tell us what he feels.

So, we just keep on doing what we're doing. He does seem to be doing well with his weight gain, despite the fact that some days, he refuses to drink some of his EleCare. I wouldn't describe him as being a happy kid, but who knows if it's just his temperament or if he's cranky because his throat hurts all the time. 

I did pull pork from his diet too. I mentioned previously that he was still vomiting occasionally and, well, he was also eating pork only occasionally. I looked at a food diary I had been keeping and felt like the times he ate pork corresponded well enough to the times he was getting sick, so I stopped giving it to him. Now, apart from an isolated incident last week, there's been no vomiting. We think that was due to some potato chips that he was eating that had a milk ingredient, which we didn't realize until after the fact (apparently, ridges require milk, the same brand, same flavor no ridges had no milk and we just weren't as careful as we should have been). Of course, there's no way to know for certain if that's what made him sick, but it's the only thing we can think of.

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.

Nursery

Once a child in our church reaches the ripe old age of 18 months, he or she becomes eligible to attend the nursery for a portion of the church services. Normally this is a hard milestone for me, because I guess I don't like the reminder that my babies aren't so much babies anymore, but for Oliver it was especially difficult because snacktime is an integral part of nursery.

Sending him to a place where food was involved made me a bit anxious. Obviously, the traditional nursery snack foods of animal crackers, goldfish, and the like aren't Oliver friendly. I couldn't have asked for better nursery leaders. Well, technically I could have since just before Oliver came of age, it was time to find new nursery leaders and by virtue of my "job" at church I was able to recommend people for the position. So basically if there was a better choice of people, I could have asked for them, but I'm pretty sure there isn't.

They knew about Oliver's restricted diet and several weeks before he was eligible for nursery, they were asking Jordan and I for snack suggestions. We never intended for them to completely revamp the nursery snack menu but they did and we certainly aren't complaining!

So, just what does a child who can't have wheat, dairy, eggs or soy eat for a snack? Rice Chex or Corn Chex and apples or bananas or carrot sticks are in the current rotation. I've also made him graham crackers that I'm not completely sure if he likes or not. At home, he eats Kix and Chocolate Cheerios and I've recently found some pretzels that he can have that he really does like. Checking out the snack food section really makes me wish he could have soy, that seems to be the one ingredient that is in all of the wheat-free, dairy-free snacks.

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.

Will He Grow Out Of It?

"Will he grow out of it?" is a question I get a lot. The short answer is no. The long answer is, well, read on.

It's fairly common knowledge that children often grow out of food allergies. Eosinophilic Esophagitis isn't a typical food allergy. Chances are that Oliver has "normal" IgE mediated food allergies* that don't affect his EoE and others that do. For example, blood tests have told us that Oliver has an awful lot of IgE antibodies when milk is introduced to his system. This very likely means that he has an IgE mediated allergy (I say very likely since these blood tests aren't always accurate, especially for young children). Since drinking milk (or even just touching milk) gives him an eczema rash, we tend to think that's a true allergy for him. But, milk may not trigger his EoE. If it turns out that it doesn't trigger the EoE, he could very well grow out of the allergy. If it does trigger the EoE, he will always need to avoid milk.

How do we know what triggers the EoE? First we have to get to a point where we've eliminated everything that might possibly cause a reaction. Hopefully he will have another endoscopy before the end of the year. Either it will be clear (meaning no eosinophils) or not clear. If it doesn't come back clear, then we need to eliminate more foods (while still keeping him off of the ones he's already off). If it comes back clear we know we've eliminated the offending foods and we can start to add some back because may have also eliminated foods that really aren't triggering his EoE. If we are able to add a food back with no reaction from him (we'd probably need another endoscopy to know for sure), then that food can go on his okay list.
Basically it's a long game of trial and error.

Clear as mud, right?

*IgE antibodies are produced when immune cells encounter the food, the antibodies see the food as an invader and trigger an allergic response. This itself has nothing to do with EoE other than the fact that many patients have IgE allergies along with their EoE and testing for IgE allergies can be a good (and much less invasive!) way to guess what EoE triggers might be. For some people, their IgE allergies ARE their EoE triggers straight across the board, but I don't believe that is very common. (last paragraph updated 12-13)

What's for dinner?

I've been thinking about this for an hour and a half but I just can't decide. Alison does a very good job of having dinner ready for me every night when I get home from work. On the weekends I lend a hand but this has gotten much harder lately.

For dinner, we try to eat a meal which Oliver can eat, or at least prepare a meal where he can eat something that looks similar. For example: we can all enjoy a stovetop meat loaf with potatoes and green beans as long as the meat loaf is prepared without wheat, milk, eggs, soy, nuts, peanuts, black beans, or chicken. Another night we may eat pizza preparing a small wheat free pizza crust for Oliver and topping it with Dayia Cheese substitute, this requires a little extra effort but is not insurmountable.

For baking Alison relies upon the Allergen-Free Baker's Handbook. I was going to make some rolls to use as hamburger buns for tonight's dinner but I don't think we have any rice milk powder. Until we have all the staples, baking from this book requires some major planning ahead. . . . I don't think they have rice milk powder at out local Smith's here in the Barrio, we usually have to drive across town to Whole Foods or Vitamin Cottage for this stuff.

I simply haven't been properly introduced to the ins and outs of the EoE kitchen, so for tonight's dinner it looks like I may just make some hash-browns unless Alison has some great idea. She probably does, she's amazing!

What can I do?

There are several things anyone can do to support those with Eosinophilic Disorders.

1. Write your congressman and encourage him or her to become a member of the bipartisan Rare & Neglected Disease Caucus chaired by Representatives Joseph Crowley and Fred Upton. For more information on the caucus and how to contact your representative click here. Already did that? Well, you just might have a new congressman who needs an invitation.
2. Donate to the Cured Foundation (Campaign Urging Research for Eosinophilic Disease). CURED is a charity that we are actively involved with that raises money to find a cure for EE. CURED has donated over $2 million to research over the past 6 years. CURED has begun a $1 challenge. They are looking to find 500,000 people to each donate $1 or more to CURED, since that is something that almost everyone can do in these hard economic times. If you are interested in donating, please mail it to CURED at P.O. Box 32, Lincolnshire, IL 60069. Or visit their web page and donate via Paypal.
3. Donate to APFED Hope Research Fund or signup with iGive.com or BuyForCharity.com and choose APFED as your charity of choice.

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.

Back to Not Sleeping Well

Oliver has not been sleeping well at night lately. EoE reactions are often delayed, but I have no idea how long. I wonder if it has anything to do with the cheez-its from two weeks ago, or perhaps the cupcake he may or may not have got from an older brother last Wednesday. Yikes! Usually I'm very good at making sure he doesn't have anything he shouldn't. No so much lately, I guess.

TKO

Our ordeal with the Insurance company has come to an end for now. Unfortunately we are the ones on the mat. TKO! We've lost our fight.

• Our appeal began with a request for a pharmacy exception as an effort to get our insurance company to cover some of the costs of an elemental formula. The formula costs $196 for a case of 6 cans of formula which Oliver consumes in about 15 days. Obviously, as he grows his nutritional needs will increase and he will consume the formula at a faster rate.
• July 26 -- Our drug request was denied because "EleCare Formula used to treat Eosinophilic Esophagitis are specific exclusions and are not covered benefit on this members plan."
• Sep 15 -- We appealed the adverse determination but the denial was upheld because "this is not a covered benefit per [our] benefit plan."
• Oct -- We requested an internal panel review hearing.

Today we had the Internal Panel Review Hearing. It was the last and final step in the appeal process. In preparation for the hearing we supplied the panel with copies of Oliver's medical records. Oliver's GI, PCP, Allergist, & Nutritionist wrote letters on Oliver's behalf explaining the importance of EleCare in his treatment as well as citing medical articles which indicate that elemental formula is the accepted medical practice for children with EoE. We also furnished complete copies of a dozen journal articles about EoE and its treatment. After all of this work the insurance company simply reminds us that "PHP determines whether a healthcare service or supply is a Covered Benefit. The fact that a Provider/Practitioner has prescribed, ordered, recommended, or approved a healthcare service or supply does not guarantee that it is a Covered Benefit even if it is not listed as an Exclusion."

The hearing went something like this:

• The participants were introduced
• We stated our case - i.e. that Oliver needs EleCare, it has been beneficial for him, and it is what all the doctors recommend
• The doctor for the plan stated their case - i.e. they don't cover Nutritional Supplements
• We were asked how much formula he consumed (currently 24-30 oz. per day) and what other foods he consumes
• We left and the panel deliberated

Based on our conversations it would appear that because EleCare is not Oliver's "sole source of nutrition" it is a supplement and therefore not covered. We contend that EleCare is Oliver's primary source of nutrition and the small amounts of fruits and beef that he eats are a supplement. He receives between 750 and 900 Calories a day from his formula, as well as a complete set of micro-nutrients, vitamins & minerals.

One of the big problems with the whole process is I still don't know what I needed to prove to the insurance to get them to cover his EleCare . . . perhaps there is nothing we could have done. It would appear that the appeal process is simply a formality to satisfy the requirements of the state, not something designed to help the consumer.

Where do we go from here? Now that we have a complete and utter denial of coverage from the Insurance provider we will look to other sources for help. The manufacturer has an assistance program, will we qualify? I'll let you know.

Medicine Free (For Now)

I'm declaring Oliver officially off the Flovent. I was ready to go to every third day two weeks ago, but then he got sick. I kept with the every other day, but then forgot a day. Since he was doing fine, I kept with that pattern one more time and then stopped the medicine altogether. So far so good!

So, for the time being, his EoE is only diet-controlled. It's my understanding that we were using the medications to help his esophagus heal, so that it wouldn't be painful for him to eat. Once we have an endoscopy, we'll know for sure if his esophagus is doing better.

If You Give a Boy A Cheez-It

Or, rather, if that boy sneaks some from the box left on the ground. In any case, if Oliver gets a cheez-it, he will apparently break out in a horrible rash a few days later. I guess it's good to know that that milk allergy is still going strong and that he is so very sensitive that just a few cheez-its will cause a reaction

Sick Again

Oliver has had a rough weekend. He's not wanting his bottles, though he will eat food. He's thrown up a few times (always right after a bottle). He will drink water, so he doesn't seem to be getting dehydrated. The nurse told us that since he is still eating and drinking to wait it out a bit longer and, of course we missed the call from the GI.

He must have eaten something, but I don't know what. He's down to flovent every other day, but we've been doing that for a few weeks now.