Climbing Mount Eosinophilimanjaro

For anyone new, here are the Cliff’s notes…

In January Henry had an endoscopy done of his esophagus.  The scope was to either diagnose or rule out Eosinophilic Esophagitis. (EoE for short.)  Basically a tube with a small camera went through his esophagus, and biopsies were taken from 3 sites.  The biopsies were looking for eosinophils, (eos) which are white blood cells.  They aren’t supposed to be in your esophagus, so if they are there, it signals a problem.  They appear there due to a weird kind of allergic reaction.  This isn’t the same allergic response as his other allergies.  Those are “IgE” mediated allergies, the IgE antibody reacts to food, this causes the wheezing, swelling tongue, tight chest, hives, etc.  EoE is a reaction that causes the eos to sit in the esophagus, and they cause swelling and pain.  Henry was having stomach cramping, and a sore throat when he eats.  He also drinks a lot during meals to wash his food down. These are all symptoms concurrent with EoE, but the only way to diagnose it is with an esophageal scope and biopsies.  The esophagus could look completely normal, but the biopsies come back with high eos counts, or the esophagus could look swollen and the biopsies could come back with zero eos.  His GI came out after his scope, and said she could say with 99% certainty that what she saw was EoE, but of course we had to wait for the biopsies to be sure.  We got the biopsy results a week or so later, and the diagnosis was confirmed.

****

Last Monday, we had our “clinic” appointments.  We met with the GI first, and she explained our treatment options.  In a nutshell they are “crappy option #1” and “crappy option #2.”  The first option is medicinal, we could give him oral swallowed steroids.  These work 75% of the time, but must be taken indefinitely to keep the eosinophils under control.  Actually you play a game of 3 months on, 3 months off to make sure they come back, 3 months back on, etc. for a little while.  (Scoping at the end of each 3 month trial)  This choice is controversial because there is not enough data to determine the long term effects of continued steroid use.  Just to clarify, this would be considered a topical steroid, even though it’s swallowed, because it’s treating by coating the esophagus, not by entering the blood stream.  True oral steroids are riskier in kids.  Option number 2 is diet change.  This can be broken down even further.  2a would be elimination of the top 6 EOE triggers for 2months, and then a scope to see if we found it. The top triggers are wheat, dairy, eggs, soy, nuts & seafood.  Henry only eats seafood out of that list, but very randomly.  2b is complete food elimination, and the use of a strict elemental diet, i.e. formula only, 6 weeks. Then you scope and make sure the eos are gone, so you can slowly start trialing food.

(The thing that I really HATE about this disease is that the only way to make progress is to scope him under anesthesia.  Every change you make to treatment must be done after a scope.  I’m a member of an EOE Facebook group, and there has been talk lately of how brain function is affected by undergoing multiple procedures under anesthesia early in life.  Learning disabilities and reduced brain function are a couple of the things that were found during small studies.  So that’s one more thing for us to worry about, but it’s a necessary evil, so we really don’t have many options as far as that is concerned.)

I asked her about Henry’s eosinophil count, just so I knew what we were dealing with.  An EoE diagnosis requires a biopsy of greater than 15 eos per biopsy. (There is some magnification criteria as well, but I don’t remember it and it’s not really important for this discussion.) Henry’s were “all about 40, and found throughout his esophagus.”  So definitely EoE, but I have heard of worse numbers.

After the GI went through the two treatment options, which we were already prepared for thanks to the internet, it was time to speak to the new allergist.  In between appointments, Ian and I talked about which treatment we were leaning towards.  We leaned in opposite directions, and that was a little surprising to me, because it rarely happens.  Both options are less than ideal, so there was no way for either of us to be right or wrong.  We both also had very valid and well thought out reasoning for our choices.

When the allergist came in, he sat down and sighed. It was a long sigh.  I felt my hear sink a little, but I understood where he was coming from.  There is just no easy answer here.  Henry already doesn’t eat what is in the 6 food elimination diet, and he’s still young to resign him to a life of steroids.  Neither Ian nor I were at all ready to even entertain the idea of the formula only diet.  The dr’s both could see that I think, because neither pushed it.  The allergist said we would save it as a “nuclear option,” because 99.9% of kids clear their eos with the elemental formulas.  It sounds like a no-brainer to pick that option when you hear that, until you realize that the road back to food is a long one.  Groups of foods are trailed 6-8 weeks at a time, with a scope after each one to make sure the eos have stayed away.  If you add in fruit for example, and the eos come back, you then need to try to figure out which one or ones are causing it.  The allergist said the scopes are hard on families, because it’s easy to get your hopes up, and then be disappointed, not to mention the kid who has to stop eating something he was just allowed to have for 2 months. We aren’t ready for that.  He also looked at Henry’s allergy testing results from September of last year, and we all agreed that trying to test him for EoE triggers wouldn’t work,because he’s the kind of boy who tests positive for everything. (There is no testing for EoE, they just do regular testing, hope something shows up as positive,pull that positive, and hope it’s the EoE trigger.  Seriously, the field of allergies is due for a major medical break through any day now.)

We talked a lot about what Henry does eat, and saw some hints as to what it could be.  Lots of EoE kids react to meats for example.  Since Henry cannot have legumes or dairy, meats are his only protein option, and he eats a lot of them.  In the end, we asked the allergist what he thought.  He said if he had free reign, he’d take out the meats and corn, since corn is a trigger he sees most commonly after the top 6 and the meat.  We chose that option, along with supplementing with elemental formula* since we are taking out a big part of his diet. We were given a referral to a dietician, and we actually saw her this morning, but that appointment will have to be it’s own post.

So this is where we are.  Henry is not eating dairy, egg, soy, wheat, barley, peanuts, tree nuts, white potatoes, chickpeas, lentils, any legumes really, celery, raw apples, raw carrots and now no chicken, beef, turkey, pork or corn.

I’m angry and sad.  Mostly angry.  We’ve been through the 5 stages of grief, but I keep going back to hang out with anger.   I just keep thinking to myself, “It’s food! Why is food making him sick?”  I’m feeling very frustrated about it and it takes me back to those scary baby days when we didn’t know what was wrong with our boy and it didn’t seem real that it was food. I’m worried about what it means for the rest of his life.  I’m angry that there isn’t a better, less invasive way to deal with this, and the only treatment options are in the allergist’s words “prehistoric.”   I know that doesn’t help anything, but it’s how I feel, and I want to be honest about it.  I put on a happy face for Henry, and try keep up with how he’s feeling, because that’s more important than how I’m feeling.  He actually makes ME feel better, because he’s handling it so well.  He is doing amazing with the diagnosis and the diet. I have no idea how he keeps his positive attitude, but he does.  He’s sad that he can’t have “chicken and rice tastes so nice,” which is his favorite meal, and his go-to snack of corn chips.  He’s drinking his formula shakes like a champ, and that is a huge victory.  (Picky is his middle name!)  They are kind of loaded with sugar, but at this point I’m not going to worry about it.  We need to get enough formula in him to make up for his very limited diet. We’ve told him that for right now it’s only for 2 months, and hopefully we will be able to add some of that stuff back in.  (It’s weird, you don’t want to be able to add all the foods back in, because that means you haven’t found the trigger(s).  Such a strange disease this is.)  He seems to be accepting of it for now,but we are just at the beginning of the diet.  He’s very strong and very brave so I’m not too worried about him in the short term.

We are at the beginning of what appears to be a very long process.  It’s not going to be easy, because this disease is so confusing and the treatment options are limited.  I found Henry a shirt the other day, I thought it was perfect for what is happening in his life right now.  It says “A smooth sea never made a skilled sailor.”  I do feel that he is going to be even stronger because of all of this, and we will be with him the whole way, helping him adjust his sails.

Tomorrow I’ll post about our appointment with the dietician. It involves us most likely scaring away a young nutrition student on his very first day.

*The formula is very expensive, and not covered by most insurance.  Some states have laws requiring coverage, but Ohio does not.  I now have a new project to work on.

(edited because there are only 5 stages of grief, not 7. I bet there are actually a lot more than 5.)

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