Goose Egg!

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(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…

slurry

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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

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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.

 

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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.)

courage

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!