Vampires, Pudding, and the Personal Poison

We’ve settled into a daily routine with OIT.  It’s hard to believe that feeding my kid her personal poison every morning has become routine.  The protocol we are on is best described a “low and slow.”  So even though she is 4 months into it, we’re just snuggling in and getting comfortable for the long haul. 

Her protocol requires that she has her PP (Peanut Protein or Personal Poison – you decide) each day within 2 hours of when she had it the day before.  Don’t worry, it’s not as convoluted as it sounds.  Basically if she has it at 8am on Tuesday, she can have it at any time between 6am and 10am on Wednesday (2 hours before or 2 hours after).  It is great to have this flexibility.  We’re able to move dosing around with relative ease based on activities for the day or week.  Which is a good thing because I’ve recently discovered that teenagers are part vampire.  Seriously.  (Maybe that’s why many of them like vampire books.)  They sleep all day and are up all night.  Sun streaming in the bedroom window can send them into paroxysms of pain.  Fortunately, in lieu of blood for sustenance they manage quite happily on an endless supply of pizza.

After she doses, she can’t raise her heart rate for 2 hours.  She also can’t go anywhere.  This has been a point of contention because she wants to just GO.  The possibility of a major reaction in the car while driving down I-95 at 70mph (or thereabouts) just doesn’t seem to be a deterrent.  Teenagers are amazing. 

The actual dosing of her peanut flour is done by mixing it into a medium of her choice (approved by Dr. Nash).  Generally, they use applesauce in the office for updoses.  She liked that at first, but the more the peanut flour the more it messes with the taste.  (Sydney had me try the peanut flour with old, extra doses.  We were curious how ‘peanutty’ it tasted.  I took the 100mg like a shot without mix-ins.  It’s pretty darn strong!)  We’ve now moved on to pudding.  Dr. Nash has suggested ice cream, which drew a lot of enthusiasm from the peanut gallery.

We are 4 months into this protocol and are looking at another 7 to 8 months of updosing every other week.  After that we get to visit Dr. Nash just once a month.  I know that Sydney and I will both be overjoyed when that happens.  I think that the biggest challenge for us on this journey has been, well, the journey…

Knock on Wood, Cross Your Fingers, and Throw that Salt!

So, a friend recently asked if I’d given up on this blog.  Apologies to all.  I haven’t given up.  I was trying not to jinx us.  However, I realized that the intent of the blog was to help others benefit from our journey.  So, I’m back.

I was worried about jinxing us because it has been going So. Unbelievably. Well.  Sydney has already updosed all the way to 100mg, which is about 1/3 of a peanut.  She’s had a few bumps in the road, but we’ve been very fortunate.

100mg of peanut flour.  This crap is getting real!

Shortly after my last post she had a reaction during her daily home dose (hence the “jinx” worry).  She took her dose, failed to eat breakfast, and within an hour felt nauseous and ended up vomiting.  Fortunately, she had no other symptoms and Dr. Nash said the dose was in her long enough that he felt comfortable she got enough of the peanut protein and we didn’t need to make the 9 hour drive back to him in order to down dose.  (Bless you, kind sir.)

The only other major issue was a week or two ago.  She again failed to eat breakfast* and again around the hour mark felt nauseous.  She didn’t throw up this time, but did have a bit of wheezing that was quickly resolved with just 2 puffs of Ventolin. 

For the most part, her daily doses have been uneventful.  She will have some excess saliva that goes away with a drink of water, and occasionally a bit of stomach discomfort.  You may read this wondering exactly what Kool-Aid I’ve drunk to think that this is all just rainbows and sunshine.  But, remember, OIT is the slow re-teaching of an immune system to tolerate an allergen.  As much as we would have liked all straight A’s during this “re-teaching,” we will accept the occasional B or C as long as the end result is a passing grade.

So, for now, knock on wood, cross your fingers, and throw some salt over your shoulder.

*Dr. Nash does not believe eating or not eating food around dose time affects the likelihood of a reaction.  He, of course, bases this on his experience in study and private practice, as well as other published studies.  All I know is that the only 2 times she’s had a reaction, she hasn’t eaten breakfast.  Whether it’s a sugar pill or not breakfast is now a requirement.