Monday, July 9, 2012

Peanuts, Epi-Pens, & Quacks

Henry is allergic to peanuts.

I KNOW, RIGHT?!?!?! Like I need my kid to develop a life-threatening allergy when I'm ALREADY doing such a good job of being an overbearing, freakout-prone, I-can't-handle-it-when-my-kid-is-sick, psycho-mommy.

But, despite my stellar laid-back parenting style, he is indeed allergic.

The first time he had peanut butter, at about 18 months, he got a few hives on his face. So we waited until he was 2 and tried again. A few tiny hives. He has sensitive skin, so I was still unconvinced that it was a 'real' allergy, so we let him try peanut butter a few more times, but, alas, every time, hives.

Hivey-hivey-hives. Blah, blah, blah, BOO.

So, trip to the pediatrician, allergen blood panel, and TADA, he IS in fact, allergic to peanuts.

And, then, guess what we got?

Yup. A freaking Epi-Pen. An Epi-Pen JUNIOR, to be exact. Because even though his only reaction now is hives, peanut allergies are notoriously unpredictable, and he could develop an anaphylactic reaction with ABSOLUTELY NO WARNING.

There's two of them in the pack, and it comes with a dummy Epi-Pen and a little diagram of a toddler thigh, so that I can 'practice' jamming a needle with life-saving epinephrine into my two-year old's sweet, chubby, little thigh, just in case he ever eats a peanut and then STOPS BREATHING AIR, ARE YOU EVEN KIDDING ME RIGHT NOW.

Okay.

So. Clearly you can see that I'm handling this all splendidly, can't you? Ohhhh, yes you can! I'm a paragon of calm and peaceful parenting! Be like me!

So, Henry's pediatrician, who I love with all my hearty-heart-heart told us she would give us a referral to an allergist. She then said, "I can send you Allergist A, who has is part of a Well-Known Network and is Excellent and Traditional, or I can give you a referral to Allergist B, who has a small practice, but is also Quite Excellent and is doing some New Things with food allergies." Then she said that Allergist B tends to take a more 'natural' approach than Allergist A.

So, I picked Allergist B, because I like to fancy myself 'natural' even though all our food comes from Costco and practically none of it is organic and sometimes we go to Dunkin' Donuts. Whoopsie!

But apparently, fancying myself a 'natural' gal, despite mounds of evidence to the contrary, has paid off. Because, Allergist B does in fact appear to be Quite Excellent, and is indeed, doing some New Things.

Now, before I get into this, I should admit that every time I tell someone about what we're doing with  Allergist B, I feel like they think I'm crazy. And, I'll admit, it does sound a little crazy at first.

What are we doing, you ask?

Well, we're feeding him peanuts. Every day!

You see how it could come off as a teeny bit crazy, right?

It's not, I swear. We're not crazy! Allergist B is not a quack!

Duke University has been doing a study on Peanut Oral Immunotherapy. If you are medical and like big words and stuff, you can read about it here. If you are a normal person, this article will probably make more sense. Or, you can just listen to me ramble on about it for the next few paragraphs. Reader's Choice!

The gist is this: they've taken kids with severe peanut allergies, and they first determine what amount of peanut causes them to have a reaction. Let's say it's 100 mg of peanuts. So, if they react to 100 mg, then every day, for a number of months, they feed them 50 mg of peanuts, since 50 mg is an amount that does NOT cause a reaction.

Then, they give them 100 mg again, and see what happens. If they don't react to 100 grams, then every day for a number of months, they give them 100 mg, and then they bring them in again, and try to up the quantity to 150 mg.

Get it? The idea is that they continue to expose their immune system to small amounts of peanuts, slowly upping the quantity, so that the kid's immune system can 'overcome' the peanut allergy.

This study, and others like it, are happening because doctors are beginning to realize that simply carrying an Epi-Pen and avoiding peanuts has not really been super-effective for those with severe allergies. No matter how careful you are, there's always the risk that food has come into contact with peanuts, and for those with very, very severe allergies, even coming in contact with peanut residue, or breathing in peanut particles can cause a life-threatening reaction. And, despite peanut-free foods, and peanut-free tables, and peanut-free schools, kids are still developing severe peanut allergies in ever-increasing numbers. The hope of these studies is that after successful oral immunotherapy, the kids will be able to have peanut safely in their diet, and the secondary reward is that their poor, poor mothers won't have to CONSTANTLY WORRY THAT THEIR CHILD MIGHT BREATH PEANUT AIR AND DIE, ARE YOU EVEN KIDDING ME RIGHT NOW.

So, uh... we're, uh... going to go ahead and do it. (See: Not Crazy, Not a Quack)

Last Monday, we spent FIVE HOURS in the allergist's office doing an oral challenge test to determine what amount of peanuts Henry can tolerate before he has a reaction. The good news is that he can tolerate a pretty decent amount. He got to 800mg before he got any hives. To give you some perspective, some kids in the Duke study anaphalaxed at 6 mg of peanuts. We got to 800, and he just got one or two little hives.

The bad news is, we spent FIVE HOURS in the allergist's office. FIVE EVER-LOVING HOURS, PEOPLE. It had to be this way though, because they want it to be in a super-controlled environment, because just in case he did have an anaphylactic reaction and STOPPED BREATHING AIR, ARE YOU EVEN KIDDING ME RIGHT NOW, then they would be prepared to give him epinephrine immediately, because it's super important that NO ONE DIES, don'tcha know.

Then, the next day, after the FIVE HOUR visit, we went back for a THREE HOUR visit.

(Quick Side Note: This is what we should do instead of torturing prisoners. Forget waterboarding. If we need information from someone, we should lock them in a small room with an energetic and OH SO VERY VERBAL two year old, and his teething baby sister. They WILL break. And it may not even take five hours.)

You see, on the first visit we were determining what amount he would have a reaction at. We started with 6mg, and continued to double it until he reacted. So, no reaction at 400 mg, but he DID react at 800.

So, the next day, the idea was to give him the amount that he'd be eating every day for the next few weeks, and then SIT IN THE FREAKING WAITING ROOM FOR THREE HOURS to be sure that he had absolutely no reaction to that amount.

See! Allergist B is not a crazy! Or a quack! He's verrrrrrry thorough. Three hours in a waiting room, kind of thorough.

But, here's the real kicker. Henry's starting dosage of peanut is 600 mg. So, for the next two weeks, he needs to eat 600 mg of peanuts every day. And, to make things easy on this Mama, Allergist B had a BRILLIANT IDEA!

An idea that would involve NO measuring, NO room for error, and absolutely NO worries that Henry would not want to eat his peanuts on any given day.


Reese's Pieces just HAPPEN to have 600mg of peanut protein in one candy. (Actually, it didn't just HAPPEN this way, Allergist B chose 600 mg as the starting dose, knowing that Reese's Pieces are that size. See?!?! He's a really smart dude.)

So, every day, for the next 2 weeks, Henry has to eat one Reese's Piece. Because his doctor says so. And, let me assure you, Henry is TOTALLY COOL WITH THIS SUGGESTION.

And then, after awhile, every day he will eat two.

And then, after awhile, every day he will eat three.

And then, after awhile, every day he will eat four.

And then, eventually, we will go back to the allergist, and Henry will attempt to eat a 'normal serving' of peanut butter (2 Tablespoons) and we will see if he has 'overcome' his peanut allergy.

And with any luck, I will get to throw that damn Epi-Pen Jr. in the trash one day, because even though I am VERY glad that it exists, and VERY glad to have one in case we need it, I really really really really want to never EVER need it.

So, wish us luck! And, if you think we're making a crazy, very dumb decision, please don't tell me!
I care too much about the opinions of others! Ignorance is bliss!

Unless, of course, you want to tell me that you agree with ALL of my decisions and think that I am an EXCELLENT mother. That, of course, is always fine. Reese's Pieces for you!

9 comments:

  1. How interesting. Glad to know there are doctors out there interested in doing something instead of just passing out epi-pens. I am available to watch Maggie while you go to the allergist. Noel

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  2. I agre with all your decisions and think you are an EXCELLENT mother. It's great you are doing this and helping blaze the trail for this therapy!

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  3. go henry! i'm excited to hear how this pans out. and i also think i need at least 1,113,600 mg of peanut butter a day (that's 600mg x 1856, which i think is decent dosage).

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  4. Love this! I like your allergist too. And the usage of Reeses pieces. It all makes sense... it's pretty much like what they do with allergy shots, just less painful and tastier.

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  5. Rachel, you are an INCREDIBLE mother! And it sounds like you are doing the right thing to hopefully help Henry overcome his scary scary allergy!!! Keep us posted - love your family so much!!!

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  6. Hey Rachel - We found out Alex had peanut allergies at 1 yr. the same way you did! He also has tree nut allergies. Our allergist said we could put him in the peanut trial, but it wouldn't matter because of the tree nut allergies he still will have to carry an epipen always. He is tested every couple of years & still is highly allergic so will probably always have the allergy. The good news is his last reaction was about 8 yrs ago & he has never gone into anaphylactic shock. He is very careful about checking labels and not eating baked goods from unknown sources. When he was little, I had to educate everyone who had care of him - older relatives were the worst offenders at not taking it seriously. (His sister is trained in the use of the epipen & would love to administer it to him :) Give me a call if I can help! Deb Heider

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  7. How interesting! I wish there was a tasty candy for my darn dustmite/every-tree-and-grass allergies!! Good for you for exploring all options- you are an excellent momma!!

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  8. Very awesome!
    I did hear that there was some talk about using this treatment for severe food allergies (this method has been used for pretty much ever for non-life-threatening allergies), but I didn't know they had put it into practice yet!

    I can only imagine having a young child with a severe food allergy. I am deadly allergic to shellfish - can't even walk past an oyster bar without going into anaphylactic shock, using my epi-pen & spending the night in the ER, all just from the smell of cooking the oysters/shrimp/lobster/etc(brilliant me, I live on Vancouver Island - ocean ALL around me. Silly.) For whatever reason though, shellfish allergies don't tend to show up in people until they are in their teens or older. It's the only food allergy that doesn't typically show up in kids.

    I know when I started reacting it was pretty scary. My husband has yelled at wait staff and dragged me out of restaurants that don't understand what shellfish is. Mad props to you for not just calmly accepting the scary fact that at any moment your young child could pretty much die & more than that, actually DOING something to prevent it! It seems like more & more parents these days opt out for hand sanitizer, bubble wrap, arguing with school boards, and ultimately hiding their heads in the sand until something bad happens. Then, they attack anyone & everyone that didn't completely obliterate the allergen off the face of the earth!

    At any rate, I am saying you freaking rock. Don't let anyone out there tell you otherwise. When you have a life-threatening allergy you are pretty much just hanging around, stressed & worried ALL THE FREAKING TIME until you eventually do react. You are taking strides to make sure your son doesn't have to grow up with that fear.

    This has become a long rant, sorry. I will end it up with one AWESOME thing that I just recently found out for food allergies and eating out. A "chef card." I'm a bit of a photoshop nut so I fancied mine up (and translated it into 5 or 6 different languages, so I can eat foreign foods again!!). But here is the basic idea of it - http://www.foodallergy.org/page/chef-card1

    Hope the treatments keep going successfully!

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