Goose Egg!

(I wonder if Henry is allergic to goose eggs?  Probably.)

 

We got the results of Henry’s third scope, which was about a month ago.  A big beautiful zero.  NO eosinophils were found!  This means that the Pulmicort worked wonderfully, and we got permission to keep Henry on it for the foreseeable future.  The steroids work for about 75% of EoE kids, and with our track record, 25% seemed like a big chance that it wouldn’t work, so I think both Ian and I were a little nervous to know what the results were.  (Me especially.)  I kind of always assumed the worst with this diagnosis, because Henry inherited my bad luck, and he’s usually on the wrong side of the statistics.

 

I also learned some fascinating information about allergy testing, and  “matrixes” in antibodies that determine how reactive a protein will be.  I understood it at the time the allergist was explaining it to me, but when I tried to explain it to Ian when we got home, I was already confused again.  I’ll see if I can find some diagrams online, because it really is interesting for those of us in the allergy world.

 

Henry also gained 3 pounds since April, so we are keeping him on the Neocate supplement from here on out as well. Unless we can add more food to his diet, which brings me to the scariest part of the visit.  This is the part where we talked about giving Henry some of the foods he tests positive and see if he reacts.  It’s called an “in office food challenge,” and I’m pretty sure I’m not going to be the one to take him to any of them.  He will be fed the suspicious food in increasing amounts, and watched in the doctor’s office to see if he reacts. He is the kind of kid who tests positive to everything, so this really is necessary because he is very restricted in his diet.  (His over active immune system does have a silver lining, he’s almost never sick!) It’s really terrifying to think about, so I’m just going to not think about it until I have to.  “Here Henry, eat this. It may have the potential to kill you, but don’t worry, we’ll stab you with an epi pen if we need to.”  I may need to medicate myself some way so that I don’t go crazy while he does this.

 

It was a good clinic.  The Splenda bender lives on…

It’s been quiet, but I have news.

Not news about Henry in particular, although, he is doing well.  This is really great groundbreaking news for EoE.  Some researchers believe they found the gene mutation, and pathway to developing EoE.  This is huge.  Finding the cause helps find the solution.  Send some good thoughts up into the universe, or God, or whatever you believe that treatment is coming.

 

Read more here: http://medicalxpress.com/news/2014-07-eosinophilic-esophagitismysterious-food-allergy-treatment.html

Splenda Bender

We got the biopsy results back on Friday.  No change.  The silver lining is that Henry gets to eat again, at least for a few months, while we try the swallowed steroid.  Even though we knew there was a good possibility that the diet wouldn’t find anything, we are still surprised and disappointed.  I honestly thought there would be at least a little change.  I’m also sad that his esophagus is still not healing. I figured that he was still eating at least one trigger, because he has still been drinking a lot with meals, and not eating much.

 

He’s going to be taking what the EoE world calls the “slurry.”  It’s basically a vial of asthma steroids (Pulmicort) mixed with five, yes, FIVE packets of Splenda, twice a day.  I’ve been told by other mom’s who have been doing this longer than me that it can be mixed with other things, and still achieve the correct viscosity to stick to the esophagus.  However, we were instructed to only use Splenda.  I’m having a really hard time accepting that I have to willingly give my child that much of a man made substance that isn’t exactly touted as a health food.  However, I was not able to find anything conclusive about possible harm it could cause in humans.  There are some studies that link it to liver problems and leukemia in mice, but they are given massive quantities, more than what would equal 10 packets a day for a 7 year old.  So, while I’m going to keep pushing for another option, I’m going to try not to freak out about it.  We eat incredibly healthy regularly, avoiding chemicals and dyes as much as possible, and this could help him feel better, eat more and gain some weight.  We have to get his esophagus healed, as he’s got some of the rings common in EoE patients forming.  The benefits certainly outweigh the risks as far as I’m concerned, but that doesn’t mean I like it.

 

We have our next clinic appointments in a couple of weeks.  We will discuss the long term plan as far as diet is concerned then.  I’m getting lists and information ready to plead my case for how I would like to proceed, but as always, the doctors will have their own ideas as well.  I’m not the expert here, so I will wait until we have an official plan and update then.

Go ahead and tell everybody….

Henry had his second scope today.

 

 

I was naively hoping that right after the scope I could put this whole “Henry doesn’t get to eat anything diet,” to pasture and just fill a prescription for steroids on the way home, but, it appears I’m not in charge. First and foremost, Henry is at home, so far ok, but he didn’t handle the anesthesia as well this time.  It took him a lot longer to come around after he officially woke up, and he got sick, even on Zofran.  His esophagus looks “better,” but there are still signs of active eosinophils.  So what has probably happened is that we caught one or two of his triggers, but not all of them. (This was what I was expecting, and also my least favorite outcome.)

 

We are getting conflicting info from the GI and allergist at this point about when we will be able to add more food to his diet, which is frustrating, but I know they both want what’s best for Henry, and I’m confident that we will be able to straighten it all out next week.   Our follow up appointment isn’t until the middle of May, and I made it perfectly clear that we would not be waiting another month to add at least something back, so we settled on talking Thursday about the biopsy results and going from there. (Visuals don’t mean much as far as diagnosis or treatment, biopsies are the key.)

 

The past 2 months of this elimination diet have without a doubt been the hardest parenting I’ve ever done.  I think that’s saying something considering I once had two newborns.  Henry is discouraged and disappointed.  He’s hanging in there because he’s strong, but I can tell he’s feeling defeated, and that is the hardest part.

That brings me to my weird post title.  About a month ago, we heard “The Man,” on the radio.  Henry liked it right away, so I looked for it online to figure out who the artist was, and found the video on YouTube.  We bought the song, and it’s kind of been Henry’s new theme song through out the past month.  He heard an interview on the radio with Aloe Blacc, the artist, and he told me, “Mom, he said it’s a song about getting knocked down and then triumphing.”  I play it a lot while I’m running, especially when I’m a few miles away from completing one of my long training runs, and I’m swearing and wondering why the hell I signed up for a half marathon with all of this stuff going on in the first place.  I put it on and think about my boy, who has no choice but to keep on keepin on, and then I feel like a jerk for even considering quitting.

I also want you all to tell everybody about the fundraiser I’m doing for kids with food allergies.  I’ve raised a little over $700, and I’d LOVE to get to $1,000.  So tell everybody you know, and feel free to embellish for sympathy donations. 😉  The link to donate is here.

 

Go ahead and tell every body, Henry’s the man.

 

(Insert explicative here.)

Henry started gagging on his Neocate shakes out of nowhere on Monday morning. He fought with me all day about drinking a second one. He was sick of chocolate so I made 3 different recipes, which he proceeded to reject. By yesterday afternoon he was full blown vomiting when I tried to get him to drink a shake. He was already not eating enough, so this sent me into a spiral of anxiety. The nutritionist was very stern about getting the 10 scoops of Neocate a day into the skinny boy. We made an emergency trip to our “old” allergist, who basically told us to stick with the current team because they have more resources, and each other to back them up. In retrospect, I sort of treated the visit like a therapy session for all of us because we needed someone to tell us to “stay the course.” He didn’t say that in so many words, he actually threw out the idea to stop the elimination diet and try the steroids for now. However he looked him over and decided that no harm has been done thus far so that helped me to feel better. At that point we were thinking he was throwing up the shakes because he was so sick of them, but he got sick again this morning, so it is obviously a virus. Ian and I have decided to see how Henry does after the virus moves through him, and then reevaluate the whole “change up the treatment” plan. He’s already made it a month, so he just needs to make it one more. We’ll see how it goes I guess. I’m concerned with his quality of life most of all at this point, so the deciding factor for me will be how unhappy it’s going to make him to continue.

This EoE stuff is very scary for me. There are so many unknowns. Ian and I just keep putting on a brave face for Henry, because what else can we do?

P.S. I also had a chance to ask about Miles and his egg situation. (The situation is projectile vomit when consumed.) The dr asked about any other reaction, skin, breathing, etc. He doesn’t have any of those, which led the allergist to say, “Well then, you may be in EoE territory.” (insert explicative #2)

Update on Henry

It’s been 2 full weeks that we’ve been on the new diet.  I’m trying this thing lately where instead of being pessimistic, I’m trying to use the “Law of Attraction” and think positive.  I don’t have a visualization board, a la “The Secret.” Yet.

I regretfully inform you that this approach is not exactly working.  Or perhaps it is and things could be worse?  I suppose I should think the latter.

Henry isn’t eating much.  He’s not liking much of the new foods we are trying.  He’s reacting to the new foods we are trying.  Friday he got the epi pen and went to the ER after a cookie with sesame seed in it.  I can kind of deal with the reacting to new foods thing, although my patience is wearing thin with that.  What has really got me down is Henry’s lack of interest in food, especially meals.  (I can get him to eat treats no problem.)  The thing is, there is hardly anything to give him.  He’s started reacting to Tilapia, so the only safe fish we have right now is halibut. (Note:  I couldn’t figure out quickly via Google whether or not the name of the type of fish needed to be capitalized, so I only capitalized one.  That way I at least got one of them right.)  There are only so many ways to cook halibut.  He’s eating a lot of sweet potatoes, and a lot of rice products.  He’s not going for quinoa.  I do have a few more recipes to try out, so all hope is not lost.  He didn’t like my “cheeze” sauce, or the fancy millet Ian made him.  The really discouraging part is that he isn’t eating stuff he used to eat no problem, like oatmeal.  At first he seemed to be getting better on this diet, but now he seems to be getting worse.  He is gulping milk after every bite at dinner it seems.  I’m trying to figure out if it’s a habit, or if he’s still getting food stuck.

I wish I had a better update, but hopefully we are just at a tough part of the climb and things will level out soon.

If anyone has any ideas of things to eat for someone avoiding the foods on Henry’s list, I’d love to hear them!

More about EoE

This is an excellent article on life with EoE.

Eosinophilic Esophagitis: When Food Becomes Foe

The dietician appointment

Henry’s appointment was this past Wednesday.  I admit, I didn’t have high hopes for this.  We’ve seen 4 or 5 dieticians in the past, and they were never very helpful.  I even went so far as to pay for a dietician who was not covered under our insurance, because she was supposed to be the best with food allergies.  We were actually referred to her by the pediatric dietician at the local hospital, because she didn’t know what to do with us.  Needless to say, the “allergy dietician” didn’t tell me anything I couldn’t have googled, and she basically told me Henry’s weight was fine and we didn’t really need to be there, but to come back for another $150 appointment so she could tell me some more stuff I already knew.

So you could say I was a bit jaded and not really looking forward to this appointment.

I will say that this was the best dietician we have seen.  She knew about food allergies and EoE.  I have had to tell dieticians in the past things about food allergies that I felt like they should already know.  She was shocked that I knew about hemp milk.  She said she offers it as a milk alternative for kids all the time, because it is actually really healthy, and no one has ever heard of it.  This made me laugh, we really are freaks.  I wanted to say, “Um….I invented kids drinking hemp milk 6 years ago.”  That would be obnoxious, so I didn’t. She calculated how much formula Henry needs, and then felt really bad telling us because it’s expensive.  We reassured her that we will give it to him no matter what, but it made me feel sad that families even need to worry about this.   She told us a can will last Henry 4 days, and they are $43 each.  No one ever said kids were cheap.  She is going to help us try to get some insurance coverage, but Ohio has no law requiring it, and from what I have read on the internet, it’s a long shot.  She also gave us a ton of samples, and is hooking us up with a home delivery service that is giving us samples too. I’m taking an optimistic approach that we won’t be needing this much formula after 2 months, but realistically, we are just going to budget for it from now on.

She gave us a ream of paper’s worth of recipes, most of which we can’t use, but there were 3 or 4 in there that seemed doable.  She also told us about a few support groups and websites we might find helpful, which I hadn’t looked into, so when I get a chance hopefully they will come in handy too.

Now onto the corn situation.  It’s in EVERYTHING.  I swear I’ll vote for any politician that promises to reduce the corn subsidies so we can start growing something else.  The corn derivative list is a joke.  It’s about 5 trillion things, some of which are always corn, most of which “can” be corn.  You are supposed to call each manufacturer to get the lowdown.  The fun part is most don’t even know.  Corn isn’t a top 8 allergen, so with our labeling laws, does not need to be documented on the label.  My first run in with my new, “anti corn” position was chocolate syrup.  Ok, this is the other thing about corn.  They don’t know what people really react to when they react to corn, or rather, people react to different parts.  With an “IgE” allergy, (hives, breathing difficulties, etc) the food protein is the culprit.  So things like oils are usually safe even if you are allergic to the food protein, because the proteins aren’t usually* present. Well, with corn, people are reacting to parts besides the proteins, like the oil, starch, syrup, etc.  (Maybe because HFCS is in EVERYTHING.  I hate corn.)  Anyways, back to the chocolate syrup.  I have a little recipe book from Elecare that had a chocolate shake recipe in it.  Henry said that one sounded good, but it needed chocolate syrup.  I went to Whole Foods thinking, “They most definitely have a chocolate syrup that doesn’t have corn syrup.”  I was right, but the two options they have have Xanthan Gum and some other corn derivative.  Xanthan gum is usually grown on corn.  (I did find a xanthan gum that is not grown on corn for baking.  But that doesn’t help me in this situation.)  I came home syrupless, but I did have a huge tub of cocoa from Costco.  I ended up finding a recipe to make my own chocolate syrup, and it’s flippin delicious.  I don’t think I’ll buy Hershey’s or even anything else from the grocery store for that matter. You can find the recipe here if you want to be Ma Ingalls like me.  Moving on…..

This whole chocolate syrup fiasco happened before our appointment, so I went into the appointment with 2 questions, my first was how much formula he needs, and my second was DOES HE HAVE TO AVOID ALL THIS CORN??????  She didn’t know.  She sympathized.  She asked, “Do you like to cook?”  To which I answered, “No!  I hate to cook!  But I have to cook, so I cook.”  She said the same thing I had read, that the different parts of the corn are problems for different people and that it was best to refer back to our EoE allergist. (Here’s where I will give a shout out to Henry’s new allergist we are working with for the EoE.  He emails me back THE SAME DAY.  I’ve emailed him a lot.  I have no shame.  He gets back to me sometimes in 20 minutes.)  He said that corn derivatives are usually ok, and they don’t “fire up” the eosinophils like the corn protein.  He wants us to try to avoid corn starch, which stinks because baking powder has corn starch and it’s in Henry’s “safe” bread.  Ian and I decided that we will try to avoid as many derivatives as we can, to give Henry the best chance for a clear scope in April.  (If corn is even a trigger, for now we are assuming anything on his elimination could be so let’s avoid it as much as we can.)

She also talked with Henry a lot about trying new foods.  He’s very picky.  She explained to us all that he has no leeway in regards to his weight, since he is already so skinny. We need to use as many of his safe foods as possible so that he doesn’t lose any weight.  Our new protocol for trying new foods is to require 3 bites.  She made Henry shake on it, so hopefully he will cooperate the next time I serve him a big pile of quinoa. We also discussed setting up some sort of rewards to chart to motivate him.  I am not a fan of those kinds of things for kids in general, but I think in this case it’s worth a shot.  Miles & Georgia want in on it too, I’m hoping in a month I’ll have quinoa eating broccoli freaks.

I’ve been spending most of my free time trying to figure out other ideas of food for Henry to eat. We can have fish, but there are only a couple that Henry, or the rest of us for that matter, will eat. The dietician suggested frog legs and shell fish, but Henry didn’t seem too keen on those, and I actually think it would be cheaper to feed us all formula than to be dining on lobster and frog legs multiple times a week.

The best part of the appointment may have been the fact that there was a nutrition student there shadowing the dietician.  Near the end, he mentioned that it was his first day, and when it hit me that we were his very first appointment, I started laughing.  I told him not to worry, that Henry would probably be his most complicated appointment of the day, if not the week.  I’ll be surprised if he didn’t run away and declare a new major right after our appointment.

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.)