Wednesday, December 31, 2014

Witness to Success

In this peanut oral immunotherapy program, we go back every week to "escalate" the dose a bit more. I (Brett) got to go today. There was a 10-year-old girl there who officially "graduated" while we were there. They've driven for 2 1/2 hours each way every week to do this. It was interesting talking to the parents:

"It's crazy -- 6 months ago, a peanut would have killed her. She just ate a handful of them!" 
Mom was crying a bit as Dr. Jones brought in her "graduation" certificate. They brought the whole family there to celebrate.

It's one thing to see the numbers of the clinic's success rates. It's another thing to see a 10-year old girl in front of you who can now eat peanuts without restriction when just one could have been fatal to her just last Independance Day.

Big congrats to this girl and her family! We're very much looking forward to that day!

Monday, December 29, 2014

A few lab numbers to convince your every acquaintance of your newfound madness

Okay, we’re a little crazy about this stuff.

First of all, our kid has never had an anaphylactic reaction to peanuts.  But we’re still pretty crazy paranoid – and for good reason.  The timeline:
  • PBJ @ 1 year old. Small rash by mouth with PBJ #2. Stopped peanuts.
  • Small exposure in frozen yogurt @ 18 mo. Benadryl treatment for whole body rash.
  • Allergist appointment (knowing that subsequent exposures to an allergen can be much worse)
  • Back scratch test with peanuts and other nuts - aka worst hour of our lives.
  • Labs. 
  • Wait.
  • More labs.
  • Told in terms not to be misunderstood to have a completely peanut free house and life.  Oh yeah, here’s some epinephrine for emergencies. Good luck.

And so far, we’ve had good luck.  Thank goodness.  And how long can that luck last going into pre-school and then elementary school and on to the rest of her life? 

~ I don’t want to know the answer to that question -- but I'm guessing it's not long enough ~

So how ‘bout those labs hu?  The labs here are peanut IgE levels.  You have some IgE too.  It’s an antibody -- part of your immune system.  It’s a good thing to have antibodies.  It’s a great thing!  And so are camp fires and marshmallows until it misbehaves and burns 1,500,000 acres in a forest fire.   IgE is the antibody isotype that’s notably speedy – which is why you can see allergic reactions happen so fast and furious.  If IgE “sees” something it thinks shouldn’t be there, it attacks, --> meaning it binds to Mast cells, which go *boom*, histamines are released, and wham: you have a runny nose, or itchy eyes, or a rash, or … oh yeah, a fatal drop in blood pressure or swelling throat and inability to breathe (if you get enough of them involved).  

Little things like that.

Oh…. Yeah … *THAT’S* why we’re a little crazy about this stuff. Rrrrrright.  I remember.

So since IgE is the problem antibody, that’s why they look at peanut IgE levels.  First, what’s “normal”?  I take this info from the most recent ARUP allergy lab report:
And here’s what we’ve been working with in our kid:

IgE level (kU/L)
Allergy Clinic Response and Instructions
January 2013
Definitely allergic.  Completely avoid peanuts.  Epi pen if needed.
August 2013
More definitely allergic.  Completely avoid peanuts … still.  And make sure you keep that epi-pen with her at all times.  Anything 15 or above means essentially a 100% chance of a very bad reaction if ingested.
October 2014
>100 (they apparently stop measuring at this point)
[By this time we had switched to the new allergy clinic in pursuit of this OIT treatment]

Did you see that?  Look again.  Up there.  Her first level of 8.8 was classified as “Class 3” out of 4, or “High”, and the 26.5, or a “Class 4” is as high as they care to classify it.  Her most recent reading, again, is greater than 100.  Meaning, the lab stopped counting… there’s no need to continue counting that high.

>100” is bigger than the “very high” 26.4 last time I checked.  From the lab report: 

Oh… *THAT’S* why I’m a little crazy about this stuff.

I should note here that a higher IgE level doesn’t necessarily or perfectly correlate to the severity of a reaction, but it does correlate with the likelihood of having a reaction.  In other words, you can’t exactly say based on lab work alone exactly how bad a reaction might be, but we know that she will definitely react, and according to the August 2013 lab work (and others since), we’ve been told that it’s essentially a 100% chance of a “very bad reaction”.
So has she ever had an anaphylactic reaction? 
Do we know how bad she will react? 
Does that matter or change anything for me? 
If you’re interested, the full report on the most recent lab work is here (drilled down into various components).  The very last paragraph on the report in conjunction with the 3 red lines above it is also terrifying: “If any one of these 4 components is positive, the patient has a high risk of systemic allergic reaction…”  Yeah, 3 out of the 4 bad-guys are positive, and one of them, again, is off the scale.

So um, do you see why I’m a little crazy about this stuff yet?

We’re *SO* so glad that we have the option to do this oral immunotherapy treatment for her allergy.
So again … this isn’t about being able to have peanut butter cookies around the house again (though that’s certainly a benefit).  It’s not about no longer having to constantly remind everyone she comes in contact with about her allergy (though we’re looking forward to that too).  It’s about not getting a phone call from a school or hospital in her first week of Kindergarten to tell us exactly how bad the reaction is.  

Fingers still crossed that this peanut oral immunotherapy works.

I hope I never find out how bad her reactions would have been.  

Friday, December 5, 2014

7.6 100th's of a Peanut. OIT Allergy Treatment, Day 1:

No, seriously, I did the math -- and that's it.  Given that the average peanut is 0.95 grams (or that's what this clinic is using as their official "average"), that means that Thursday was all about consuming a total of 7.6/100 of a peanut on a divided and increasing schedule, over the course of 5 hours (plus another hour of waiting and monitoring for reactions).  Actually, it wasn't even 7.6/100 of a peanut.  It was just the protein (the part people are allergic to) component of 7.6/100ths of a peanut.  That was the goal of what was her very first appointment in her peanut allergy treatment.  It was her very first intentional exposure to peanut protein. She did great.  No problems at all.  

First of all, for anyone who is reading this, I feel like I should provide a nontelligent-people disclaimer:  If you are looking to treat your child for their [allergen] allergy, I am *not* in any way trying to provide you instructions.  I am only telling our story.  It's a blog -- not DIY asphyxiation camp.  *Do not* try this at home without the supervision of a trained allergist with appropriate monitoring and instructions.  [Go ahead an imagine that I inserted any other bloated legalese to get the point across that you SHOULD NOT do this without appropriate medical supervision.]  And um ... oh yeah, don't try this at home. I hope I'm not being unclear here...

The treatment we're starting is called Oral Immunotherapy, or OIT.  I'll write more on this later -- but the basic idea is that you slowly (*VERY SLOWLY*) and methodically increase the exposure to the thing that's trying to kill you so that it doesn't kill you when you're exposed to it any more.  In the clinic we're going to, kids who have been previously severely allergic to peanuts (among other allergens) have been eating handfuls of peanuts (or other allergens) without a problem six months after they started the treatment.  But we're definitely on the very beginning side of that spectrum now, so that's where I'll keep my attention: 

The first day starts with dosing her *every* 15 minutes for 5 hours, with controlled increasing doses throughout that entire time.  So how slowly did they start?  Well, I asked one of the nurses there for some concentration and volume information on what they did so that I could do my nerdy calculations (which is how I got the numbers above).  The very first dose was the equivalent of the amount of peanut protein contained in 1/50,000th of a peanut.  That's small.  Way smaller than the amount of anxiety it causes for some people.

They diluted it into kool-aid. The nurses do the measuring and dosing.  So basically, for a 3-year-old, it means getting the undivided attention of mom and dad and a great nurse who feeds you "medicine" that tastes like kool-aid all the time all day long while you get to read books and color and play with trains and watch movies!  So, how'd she handle all of it?  She kind of loved it!  As she excitedly told us multiple times in 3-year-old-speak, "I never had someone to give me SO MUCH MEDICINE!" as she giggled and laughed and asked for her next dose.   It really was a fun day, particularly for her, though we felt it prudent to emphasize to her that she only take medicine from mommy or daddy or a nurse.

There were other kids there who came in and out getting their "Escalation" doses -- where they get their dose increased for the next week or so until their next appointment.  There was one other girl there doing their all-day-long first-day appointment.  She was working on a milk allergy.  Yes, I did the math on how much milk she had over the course of the day (Hey, we had the time...).  It was 0.8 mL of milk in divided and increasing doses.  That's about 0.16 tsp throughout the day (They're serious on this starting slow business).  And again, we're talking equivalent milk protein, not necessarily milk itself if you want to get technical.  And if you're curious for some validation on my numbers, after I made my calculations on the milk to turn it into an understandable volume of milk equivalent (the 0.8 mL for the day rather than X micrograms of milk protein), Dr. Jones came in.  It went something like this abbreviated version:

Me:  I'm trying to figure out how much milk she's [the other girl starting a milk allergy treatment] drinking total in the day today.

Dr. Jones:  Well, you can't really calculate that because we're just giving the protein, not straight milk.

Me:  Yeah, I'm trying to do the conversion to what the milk equivalent would be.  Do you know what it would be off the top of your head?

Dr. Jones:  Hu.  Yeah, you could do that calculation.  It's been long enough since we set this up though. I don't remember...

Me:  My math says it's 0.8 mL through the day.

Dr. Jones:  Well now I need to double check...

[He spends the next little while in the office running some numbers and then returns]

Dr. Jones:  So on your calculations -- you were right.  It would be the equivalent of the protein in 0.8 mL of milk.

Math: Validated

[No, I didn't have him validate my peanut calculations.  But I'm confident in them if the volumes and concentrations I got were right.  And no, I'm not doubting them.  And I'm the one writing this... so I get to choose what I say :)  And I did it right first-shot once already.  So I'm sticking with it and assuming that I'm right.  And I kept my math to prove it.]

After the day at the clinic, and no signs of a reaction, we went home.  We have this bottle of peanut kool-aid as our new twice-daily medicine of choice.    We have an army of instructions for what to do for different scenarios, a small pharmacy to accompany it, as well as their staff on-call 24/7 for anything unplanned that affects this at all.

So far, so good.  And so, we carry-on to next week when the dose gets increased.

Peanut Allergy Treatment - Day Zero

[This was originally posted 12/1/2014 elsewhere, but I'm going to dedicate this blog to this peanut story for the benefit of those who are really only interested in this topic.  Hence, the inconsistent timeline with the posts.

I say day zero, because while we went to the clinic today, we didn't actually start the treatment.  Today was an education day to prepare for the rare opportunity we are about to experience in treating our daughter for her allergy.  

I guess I should say here that my daughter is severely allergic to peanuts.  

It terrifies me.  

Having a child who is 14 years old, you'd expect that she can (in theory) understand their medical conditions, and begin to grasp an assessment of risk and consequences in their lives.  The problem is that my daughter is not 14.  She's three.  I mean, for goodness sake, she's still potty training.  She loves trains and the garbage truck.  She likes to color pictures with markers.  She thinks that every meal should involve chicken nuggets (Okay, so do I, but I can at least practice some self-restraint for both of us at least on that front).  Oh, she can parrot to us very well that she can't have any peanuts because they will "Make [her] sick."  But put a peanut butter cookies down in front of her, and she'll have no idea that this cookie could send a reaction through her little body that could swell her throat shut as she is gasping for air and end up killing her after the terror of it all. 

Oh yeah, apologies for the stark description - but that's the fear I have for her every time we drop her off at someone's house to babysit.  That's the fear I have when I see some neighborhood toddler at the park suddenly hand her some of his snacks to eat.  And as she's grown up to all of the maturity inherent in a 3 year old, and begins to play with friends more, I'm realizing that tomorrow she'll be starting kindergarten, and the next day will be Halloween at school, and Christmas parties, as well as Valentines day treat exchanges, and friend parties and, oh yeah, sitting at the lunch room table.  

Each one of those is a game of Russian roulette.  Eventually, luck will run out.

We've been to an allergist.  She's done the back scratch test.  She's done lab work.  Without getting into the details, we've been told in no uncertain terms that she is to absolutely stay away from peanuts.  No peanuts in the house.  No peanuts anywhere around her wherever she is.  Epi-pen on her at all times.  Or, as our previous allergist's clinical note says in the last item under "Plan":

My sister +Christa Dastrup was watching the news a while ago and saw a news story on an allergist here in Utah who is doing something different with his patients. She sent me a link to the news story.


He is TREATING patients for their allergy.  He is having great success at taking kids who have been severely or anaphylactically allergic to foods, and giving them the very thing they are allergic to (in small, controlled, but increasing doses under close supervision) in order to desensitize them to it, and remove the danger.  There are kids who previously have been emergently hospitalized and unable to breathe due to peanuts, who are now eating them by the handful without a problem.  

Today, Monday, I met Dr. Douglas Jones, of the Rocky Mountain Allergy clinic in Layton, Utah.  I feel incredibly lucky to have this clinic close by (about a 1 hour drive away for us).  There have been people who have moved here from Hawaii and Australia to get the opportunity to do this treatment. He's the only one in the Rocky Mountain West who is doing this -- who has made the effort to plan, design, and make this treatment happen.  And he's already having incredible success rates even in the relatively short time he's been doing it. 

The actual treatment will start on Thursday.  

I am absolutely thrilled that we have this chance to do this!