OIT and SLIT and allergy challenges

I don’t exactly know where to start with this post since it’s been a few months of back and forth and it’s not easy to sum up, but I like keeping you in the loop so here’s where we are…

P has outgrown his tree nut, soy, sesame, and gluten allergies but is still allergic to peanuts and dairy. We are aware of all the latest treatment options for peanuts – namely what is being done at Stanford and Long Beach – to desensitize patients.  Essentially small doses are administered until the immune system is convinced it doesn’t need to react…and then doses are increased over time until a maintenance level has been reached that (hopefully) allows for a “bite proof” lifestyle.  It’s called oral immunotherapy (or sublingual immunotherapy).

Here is the most detailed research article on OIT and SLIT that I’ve found.

We have been on the waiting list for Stanford’s trials for over a year, but there are now more options becoming available in our area.  The one in Sac that we looked into last year seemed super invasive and disruptive to P’s lifestyle so we passed.

A few months ago we found out about this clinic, which has a similar but more practical implementation.  I won’t go into the details but suffice it to say we decided to switch insurance companies during the open enrollment last month after going to a consultation at the Fremont office.

Fremont is a 2 hour drive from our house which can be 4 hours in traffic (and once accepted he would be going every week for months and months), but I’m trying to focus on the positive.  If this works it could save his life.  And if it doesn’t then we will continue being as cautious as we are and at least I will have a clear conscience knowing we tried.

In the meantime, I’m squeezing everything I can out of our Kaiser insurance.  We met with a new allergist (who I loved) last month and he offered to do an oral challenge in the office with BAKED milk. More on that in a sec.

My cooking buddies.  <3

This is going to come off as arrogant, but it was so great chatting with someone who knew as much as I do about food allergies…P hasn’t met with an allergist since he was first diagnosed (at 9 months) so I’ve been in a vacuum finding all the info I can on my own.  Well I finally decided I wasn’t being proactive enough and asked his pediatrician for the most progressive allergist in our area and next thing I know we are booked to meet him.  Can’t sit back and expect change to fall into your lap, right?!

He was really impressed I knew about these probiotics and clued me in on Vitamin D’s roll in allergies too, so I’ve already added that into his daily regimen.

Anyway, I was very straight with him, telling him we were basically leaving Kaiser since they couldn’t do OIT (talk about a bizarre first meeting), but I wanted to know his opinion of the desensitization protocols.  Clearly, he has no reason to push it since his support would confirm us switching to a different provider, but disclosed that he is currently doing it with his own kid (on his own) so that says everything I needed to hear.  Obviously I’m not cool doing it on my own (that’s crazy dangerous!) so now P is on the 90 kid long wait list for the Columbia Allergy clinic.  They anticipate he will get in by Spring.  Fingers crossed.

Back to the baked dairy challenge.  Here’s an article on the science behind the prolonged heating of cow milk protein and how that works to denature the proteins in a specific way to trick the immune system.  P’s new allergist gave us the article with the recipe and we scheduled a follow up appt to bring them in and give it a go.  We have until the end of 2016 with Kaiser coverage so why not?

I’m including a photo of the recipe below…the batter was divided into 6 muffins, so each muffin contained 1.3 g of milk protein.

Obviously this is food I’d never otherwise feed him – I sweeten the kids’ pancake batter with mashed bananas and applesauce and they think smoothies are supposed to have things like beans, greens and seeds in them so I had no doubt he’d enjoy this treat.  Let’s be honest, it’s basically cake.

I was trying not to get my hopes up, but it’s hard not to.  His blood work from the previous appointment (a week before) came back showing a rather steep increase in his IgE for both milk and peanut, which was alarming since it had only been a few months since he last tests were done.  His peanut actually jumped up enough to get reclassified as Class IV.  🙁  Sucks.  Anyway, that’s why we are jumping on this other opportunity!  I’m not sure why, but apparently the younger the better with allergy treatment (how do they know this stuff when it’s all so new??) so we are going for it.  I am losing years off my life stressing about him when he’s out of my sight.

I’ll cut to the chase.  He failed the oral challenge.  They cut the muffin into 16ths and he was instructed to eat one portion every 15 minutes.  By minute 25 he needed Benadryl and shortly thereafter he was wheezing enough to warrant a breathing treatment.  Womp womp.  Based on his antibody numbers, the MD wasn’t surprised, and I guess I wasn’t either, but there was definitely a small part of me that was hoping that maybe just maybe he was moving in the right direction despite what the lab work showed.  Poor kid.  He only had something like 1/96th of a cup of milk and that was too much.

He’s such an amazing trooper through it all.  He is literally the best patient.  We read SO MANY stories throughout our appointment and he colored and chatted with the staff and basically acted like the most mature 3.5 year old ever.  I am so proud of him.

Silver lining of all the driving is we have discovered the books on cd section of the library.  Still very committed to the media free lifestyle, but talk to me in a few months once I’m trying to entertain two toddlers in a car and an MD office for 10 hours straight.

Oh and don’t worry about what I’ll be doing to treat myself for all the driving…there’s a Whole Foods and See’s within walking distance of the office 🙂

I’ve already tested it out 😉 This is a roasted carrot salad with cumin and hazelnut vinaigrette.  And above is the most humongous soft pretzel.  They warmed it up for me and then I got some honey mustard from the salad bar.  WIN.

Best dates I could ask for!