Wednesday, August 12, 2015

OIT Food Allergy Treatment, Step 1: Yep, He’s Drinking the Kool-Aid

By Kelley Lindberg

My son swallows his first dose of
peanut flour mixed in Kool-Aid. This dose
equals about 1/100,000th of a peanut.

Last week I announced that my teenage son will be undergoing a new treatment for food allergies, called Oral Immunotherapy (OIT). (See “Searching for a Food Allergy Treatment—Our OIT Journey Begins.”) While not yet recommended by official medical associations in the U.S., I feel like OIT has also progressed beyond the purely experimental stage, with a small but growing number of allergists in the country providing this treatment. While the temptation to embrace this treatment as the miracle cure I’ve been hoping for is strong, there are many significant reasons to be cautious, or even downright wary.

However, I know many of you want to know how my son is doing after his first two weeks of treatment, so this week I’ll focus on telling you how the first two weeks of treatment have gone. Next week I’ll step back and talk about the concerns I had (and still have) going into this treatment, because I want the information I post to be as fair and balanced as I can make it. Otherwise, it’s of little use to anyone, in my opinion. Deal? Deal! (And I promise all my posts won’t be this long, but there’s so much to share in these first couple of posts. Sorry!)

Day 1, July 27:

Today was our information kick-off meeting. We met with the allergist and his staff, and we went over all the details, such as the dosing schedule and what to do if he has a reaction to the dosing. Highlights:
  • We’ll spend two days introducing tiny amounts of peanut in a liquid solution, every 15 minutes over a period of 3 or 4 hours, gradually increasing the dose until he reaches the level just below where average patients begin to show reactions. (Or they will stop sooner if he reacts sooner.)
  • After 2 days of this in-office treatment, we’ll take home a bottle of the solution, and we’ll administer it to him twice a day at home, every day, until next Thursday when we return for our regular “up-dosing” appointment. Assuming he got through the week without any major reactions, the office will administer an increased dose to him and watch him for reactions for an hour before sending us home with a bottle of that increased dose. We’ll dose him at home twice daily with that until the next Thursday. We’ll repeat this cycle of returning to the office to increase the dose (“up-dosing”) every week at the same time.
  • If he has a small reaction, such as a few hives in a localized spot, we can treat with liquid Zantac, liquid Zyrtec or Allegra, and if necessary, a liquid steroid. For larger reactions, we should call the doctor immediately and be prepared to administer epinephrine. Larger reactions, including anaphylaxis are less common, but they do occur.
  • He must take the peanut dose on a fairly set schedule—once after breakfast, and once after dinner, but not later than 9:00pm (so that he has a good two hours of being awake and alert before going to bed, because those two hours are the most likely time to have a reaction, and they don’t want him falling asleep during that time). The doses should be between 9 and 15 hours apart, so there is some flexibility, which is good for our family.
  • He must refrain from physical activities that might raise his body temperature for 30 minutes before and 2 hours after each dose. For an active teenager, this could be inconvenient.
  • He will start on a liquid peanut solution, then after a few weeks graduate to peanut flour mixed into a soft food (like pudding or applesauce), then finally graduate to actual whole peanuts. At every step, the peanut proteins are carefully measured and controlled. You definitely can’t do this at home (unless you have a measuring cup that can accurately measure 1/100,000th of a peanut!).
  • To enhance the treatment, the doctor recommends taking a probiotic daily. Some studies indicate that food allergies may be linked to the reduction of beneficial bacteria in the gut due to antibiotic use, so our allergist includes probiotic use in his protocol.

After hearing all of this information, my son and I went home to talk about it.

And my son balked.

He had been the one who first wanted to do this, for the obvious reasons: he wanted to be free from the danger of accidental exposure, and he wanted to stop worrying about peanuts everywhere he went. I hadn’t been sure about it in the beginning, but because he wanted to do it, I was now on-board.

But now that the treatment was only hours away, he suddenly realized it’s scary. He’s never had to use an EpiPen, and now the doctor was telling him he might have to BECAUSE of the treatment. Plus, he fixated on the “no physical activity for 2 hours after dosing” rule, and he became very upset about that. Never mind that he no longer plays soccer or runs track, and he primarily spends his time on the computer, playing his guitar, or watching movies with his girlfriend. In his mind, this was a sudden, insurmountable problem that no one warned him about.

He went to his room, I started texting my friend Kim for advice, and we each stewed for an hour. Then I went to his room, shoved the pile of clean laundry off onto the floor so I could sit beside him (See? We’re just like every other family!), and started to talk to him. I talked about the reasons we had originally looked into this process, and the ultimate goals that he longed for. We talked honestly about pros and cons. Finally, I realized I was talking myself into quitting the process. But much to my surprise, he had talked himself back into it! When he calmed down from his initial panic, he realized that his goals to become as peanut-worry-free as possible outweighed his concerns. Then he just had to talk me back into it.

Finally, we both agreed to go ahead and start the OIT procedures the next day, as planned.

It was a mentally exhausting discussion, but one I think we both needed to work through in order to feel good about what we are doing.

Day 2, July 28:

8:30am: We get to the doctor’s office bright and early, ready to start (despite yesterday’s hiccup).

8:45am: Our allergist meets with us privately to answer last-minute questions and brief us again on what to expect. We ask about probiotic brands and dosages, but otherwise we are as ready as we are going to be.

9:00am: We’re taken to the Food Allergy waiting room, where other patients and parents are gathered. There are 5 patients starting this OIT cycle with us: three teens (my son is the oldest at 16) and two younger kids (the youngest is 4). My son has brought his laptop and I’ve brought a book to read.

It looks like a syringe, but the solution is not
injected--it's squirted into the mouth and
swallowed. The syringe is an accurate way
to measure and deliver the liquid orally.
9:20am: First dose! The nurse gives my son an oral syringe filled with 5 mcg of peanut flour mixed in a liquid, which he squirted into his mouth. Then he has to “swish and swallow” with water to make sure none of the solution gets stuck in his mouth, and that he swallows all of it. (Spoiler alert: The “secret liquid ingredient” into which the peanut protein is mixed is cherry Kool-Aid!) He breathes deeply a few times, and again every few minutes, to “test” himself for any reaction. He wasn’t told to do this, so I know he’s just nervous and worried that he’s going to start wheezing. He doesn’t.

9:35am: Second dose, same quantity (5 mcg).

9:50am: The dose is doubled, so this time he ingests 10 mcg. After a few minutes, I think his face starts to look faintly reddish, but after a few seconds, it fades and I can’t decide if it’s my imagination or not. I ask the nurse, but by then his color looks normal and she doesn’t see anything either. He doesn’t feel anything, and he continues working on his laptop. I have a hard time focusing on my book.

10:05am: Same dose again (10 mcg). People in the waiting room are starting to talk to each other and share “when did you find out he/she was allergic” stories. Everyone’s nerves are starting to calm down a little.

10:20am: Increased dose—now he’s at 25 mcg.

10:45am: Increased dose again—now he’s at 50 mcg. Again, I think maybe he seems a tiny bit flushed, but it only lasts a few seconds, and then it’s gone again. It could be my imagination. I am so worried that something wrong is going to happen, I know I’m conjuring up demons. But he says he feels totally normal, he’s stopped taking deep breaths, and he’s totally relaxed about the whole thing. I’m trying to relax. Honest.

11:05am: Same dose (50 mcg).

11:20am: Increase to 100 mcg. All is good. No flushing.

11:35am: Last dose of the morning, and it’s 100 mcg again.

11:45am: The doctor comes in and gives us a refresher talk about dosing at home and what to do if he gets sick. Then the nurse gives us an oral syringe filled with a single dose (half of the amount in the last dose he just took, so 50 mcg of peanut flour), which he will take at home after dinner tonight.

7:40pm: We finish dinner, then give my son his evening dose of 50 mcg.

9:00pm: My son is annoyed with me because he just asked if he could go long-boarding with his friends. I told him he needed to stay home so I can watch him for reactions. Maybe eventually I will be more comfortable with him going out in the evenings, but for the immediate future, I need him nearby.

A hive!!!! (On his lower cheek.)
Despite my initial maternal panic, it
went away after we treated him with
oral antihistamines.
9:15pm: We’re watching TV, and my son says “Mom, I have three hives.” WHAT??? Sure enough, he has one on his cheek, and a couple on his right side. I grab the paper that says what to do in a reaction, and I line up the 3 liquid medications I’m supposed to give him. My son calmly says, “Really? All three?” Suddenly I’m questioning myself. Did the doctor say to give all 3? Or one at a time? Or…? Crap, I don’t know! I dial the phone number on the “home dosing instructions” sheet and the doctor answers. I tell him what’s going on, and he calms me down and says to administer Zantac and Allegra, but to hold off on the steroid. He says if the reaction gets worse to call him back. I make my son hang up his phone (for some reason he thinks a girlfriend conversation is more important, but I insist) and I give him the 2 medications. The hives disappear in a few minutes. Yes, I watch my son like a hawk for the next several hours. No, he doesn’t get any other hives. No, he doesn’t ask about going long-boarding again. I can’t help making one snarky little “See why I wouldn’t let you go long-boarding tonight?” comment, but prevent myself from repeating it ad nauseam. I’m proud of my restraint. I’m not sure he appreciates it, though.

Midnight: It’s been 3 hours, drama-free. We each head for bed peacefully, our first day over and our first crisis minimal and handled. Whew. I can do this, right?

Day 3, July 29:

8:30am: We arrive at the office and get checked in.

Graphic found on
Bruno Thadeus’s Hypersensitivity Slideshow
9:00am: The allergist comes to talk with us privately to see how we’re doing. My son is fine. I’m still nervous and a little embarrassed about calling the doc last night. He assures me that’s normal, then says from now on, when there’s a small reaction like that, we should hold off and watch it for a few minutes to give the body a chance to resolve it on its own. He admits that this is exactly the opposite of how we’ve been trained to act all along, but because these are minute quantities and his reaction last night was so small and immediately cleared up with the medication, we want to give the process time to work on building up his immunity. He also spent some time explaining the science of what we're doing. In overly simplified terms (which I am probably explaining poorly), a reaction happens when a single allergen protein molecule lands on two IgE receptors on a mast cell at the same time. If an allergen protein molecule only lands on one IgE receptor, there’s no reaction. It has to connect two receptors for a reaction to happen. So what we’re trying to do by introducing minute amounts of the allergen protein (in this case, peanut protein) is slowly saturate individual mast cell receptors with their own protein molecules until all the receptors are eventually “occupied” by a single peanut protein molecule, so that there aren’t any lonely IgE receptors hanging out trying to make a pesky threesome. (Okay, I’m positive that’s not how the doc explained it, but you get the idea.) {Photo from } The doctor also said that the OIT process may also increase the IgG4 in the body, and if the amount of IgG4 eventually dominates over the amount of IgE, that may add additional protection against allergic reactions. Yeah, I’m going to need to do some more research before I fully understand all of that.

9:30am: First dose of the day. Because my son had a minor reaction after last night’s dose, we dropped back to a lower dose this morning. So while the other patients began with a higher dose of peanut (1 mg, I think), my son started back at 25 mcg. The doc recommended being conservative today, which frankly makes me happy! This means we may extend his treatment by a few weeks overall, but I’m okay with that.

9:43am: I think my son looks faintly reddish again, but it goes away quickly.

9:45am: The red is gone, and he is given the next dose with no problems. This dose is 50 mcg.

10:00am: 50 mcg. No red color, no problems at all.

10:15 and 10:30am: These two doses are at 100 mcg, which is the dose we finished at yesterday in the office. There are a lot of people in the Food Allergy waiting room today—the same people who started this cycle with us yesterday, and additional patients who are farther along in their treatment and are coming in for their weekly “up-dosing” appointment. Several chat with us about how happy they are with their treatment so far.

10:45 and 11:00am: Both of these doses are 250 mcg each! This is the highest he’s done so far. No problems.

11:15 and 11:30am: 500 mcg… still going strong!

11:45 and 12:00: His last two doses for the morning are both 1000 mcg each (1 mg)! This is where the rest of the kids started this morning, but like I said, I’m okay with being conservative and taking it slow. We will go home with a bottle of the Kool-Aid solution. He will take a half-dose tonight (500 mcg), then starting tomorrow morning he will take a full dose (1 mg) twice a day until we return next week. The other patients are doing doses of 5 mg now, so my son is behind their level, but I still feel good about taking it a little slower.

Midnight: It's been an uneventful evening, which is just the way I like it! No hives, no worries after his evening dose.

Day 6, Aug 2:

My son finds an itchy bump on his torso about three hours after his morning dose. It doesn’t really look like a hive, and it could be a bug bite. Hmmm. We watch it for a half-hour, and it doesn’t get any worse and no others pop up. We don’t administer any medication, and eventually it starts to fade and finally goes away on its own.

Day 10, Aug 6:

This is the bottle of peanut solution
we use at home. Grape Kool-Aid. Mmmm!
(My son says he'll never be able to
drink Kool-Aid again without chasing it
with water for the "swish and swallow" step.)
Today is our first “up-dosing” appointment. We tell the doctor about the one mystery hive/bug-bite/bump last Sunday, and he says it probably wasn’t a hive since it happened so long after the dosing, and says we did the right thing to watch it. My son is given a single dose of the new increased amount (2.5 mg), then we sit in the waiting room for an hour to make sure he has no reaction. This time, the peanut flour is mixed in grape Kool-Aid, and for the first time, we can actually see the peanut flour floating in the solution. It’s strange to know that he’s ingesting this, on purpose, after so many years of strict avoidance. Life is weird.

Day 16, Aug 12:

I am finally getting all these notes written up for my blog. He’s been doing great all week—no reactions, no hives, no problems. Tomorrow is our next up-dosing day.

If you’re still reading, I’m sorry this was so long, but I hope this has been informative. Next week, I’ll post about some of the concerns/cautions related to OIT. (Plus, I’ll provide an update on how he does after tomorrow’s up-dose, of course!) See you then!


Anonymous said...

Hi Kelley - how fascinating!
I am tempted to ask Udo if he would consider this for his milk protein allergy...or is this for nut allergies only?
Cheers and continued progress for Your son!

Jenny said...

This is extraordinarily helpful. My 5 year old peanut/tree nut allergic son is about to start kindergarten and my nerves are taut. We've talked about doing OIT with Dr. Jones but since it is still so new I can't bring myself to do it. I will be following your son's journey. Thank you so much for sharing.

.::still blinking::. said...
This comment has been removed by the author.
.::still blinking::. said...

Thank you for this. I thought your son was allergic to tree nuts. Does he have other allergies too?

Kelley J. P. Lindberg said...

My son's allergic to peanuts, tree nuts, and lupin flour. There is a chance the peanut desensitization might help alleviate his tree nut allergy, too, but it's more likely we'll have to go through another entire cycle of OIT specifically for tree nuts. I'll worry about lupin flour if necessary in the future, since it's not a big concern in the US yet. Meike--our allergist does have an OIT for milk allergy, and he's been successful with it so far. Aileen--the probiotic he's using is over-the-counter (although it's kept in the Smith's pharmacy because it has to be refrigerated). It's called VSL+3. But the doc also suggested Culturelle or any other over-the-counter probiotic. My pharmacist recommended the VSL+3, and it was much cheaper and higher dosage than some of the others, so I went with it.

Thompsons said...

Thank you so much for sharing! I look forward to following your journey in the hopes of following suit in the next few years when my son starts kindergarten.

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Are gummy vitamins just as effective as pill vitamins?

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Food allergy is caused by an abnormal immune response to food. Two main categories of food allergy are IgE-mediated and non IgE-mediated, and some allergic disorders have characteristics of both. Reactions involving the skin gastrointestinal, respiratory, or cardiovascular systems may develop. In severe food allergies, anaphylaxis is possible.

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