The not-so-physical side of OIT

We've been on our OIT journey since May of 2018, so a little over 7 months.  I say 'we,' because this truly is a family journey.  Brandon is the one doing the heavy lifting, no doubt about it - he has to face a fear every day of ingesting his allergen, he has to be the one to observe his rest period after dosing (2 hours), and he has to be the one to say no to other things because of his dosing.  But this is a family journey too . . . . I'm the one driving him to doctor's appointments every other week, managing dosing times every day (or altering them a few days out to accommodate for special circumstances), and my favorite role . . . being his constant cheerleader. 📣  Tyler comes to most updose appointments and sits patiently (most of the time 😉), and he picks up some extra chores that Brandon can't do when he's in his rest period.  And Michael is there to encourage and support us all, as all of the pieces move, sometimes helping to provide collision of emotions or events.  We’ve settled into our roles nicely as we’ve hit our stride. 

But I think the biggest 'surprise' of this whole OIT journey is the non-physical side of things.  And by that, I mean the mental, emotional, and situational challenges that come up, nearly every day.  I think these 'surprises' are common to most families who manage food allergies, not just those on the OIT journey . . . for us, we have had to deal with all of them before OIT, but OIT just takes them all to a whole new level, one that I don't think any of us were really prepared for or expecting. 

Let's take the first one - the mental journey.  If you ask Brandon, he’ll tell you the mental part of this is as hard, if not harder, than the physical side. For any kid with food allergies, they live a life of avoidance.  Avoid your allergen, avoid foods that might contain your allergen, avoid uncertain situations, avoid kids at the lunch table who are eating your allergen . . . . . avoid, avoid, avoid.  It's isolating in a huge way, and they feel singled out, even if other kids don't see them as singled out.  Then, when you start OIT, it's a complete 180 . . . . hey, guess what, I’ve been telling you to avoid (insert allergen) your whole life, but now, you have to ingest it every day.  Okay sweetie?  And you just have to trust me that you’re not going to have a reaction to it.  And if you do, we may have to give you a shot of epinephrine, so you don’t stop breathing.

Nothing to worry about, right?

Wrong. 

I don’t know if it’s the same for all OIT families and kiddos, but in our situation, the flip from avoidance to every-day consumption (even at minuscule amounts), has been a huge mental hurdle to overcome.  Particularly for Brandon, who already tends to be hyper-aware of his health, he had a hard time wrapping his head around ingesting peanut flour every single day.  Add to that the need to use epinephrine on an updose appointment back in July (you can read about that updose here), and you’ve got the perfect storm to create an emotional tornado for him to have to deal with.  Some days, my role is more of a cheerleader and encourager than anything else.  Encouraging him to take his dose, cheering him on (in a teenager-appreciated way 😊 ) so that the rest of his day and our schedule can commence.  It’s not easy some days, I’m not going to lie.  But the end goal keeps us going – not having to live a life of avoidance, fear, and being ‘that kid.’ 

Emotionally, the journey of OIT has surprised us as well.  I think this aspect of OIT goes hand in hand with the mental journey, as the mental challenges play into the emotional response they generate.  I’m sure someone schooled in psychology could give this correlation a name and say why it happens that way, but since that’s not me, I’ll just give you some examples of how it plays out for us. 😊  For a pre-teen, already working on finding his place in a new school and working through the changes of adolescence, adding something else that singles him out is sometimes too much to handle in the emotional tank, and the frustration comes out.  For Brandon, I think the biggest emotional challenges with OIT have to do with how the process singles him out in a way even different than his food allergies already did.  Most of that centers around two things: 1) his rest period, and 2) not wanting to be away from me or Michael very long due to us needing to administer his dose.  At a time when a child is starting to spread his wings a bit more, he still has to ‘come home to the nest’ every day for his dosing. 

The bigger of the two to deal with is the rest period.  For 2 hours after he ingests his ‘peanut kool-aid’ 😊, he needs to observe a rest period.  That means no physical activity that could raise his body temperature, no physical exertion, no hot showers.... nothing that could take his body away from ‘fighting off’ the allergen.  I don’t think any of the rest of us in our household truly understand how tired he feels after he doses.  If he chills and lays low, he really doesn’t feel extra tired during the 2 hours.  But as soon as he exerts too much, he gets physically winded and physically tired.  (Too much activity could also ignite an allergic reaction, such as hives or even anaphylaxis).  It’s interesting to see, honestly.  Things that have made him tired during his rest period that used to be no big deal are things like:

• Taking his clean laundry basket up the stairs
• Shaking out and folding a large sheet from an indoor ‘campout’
• Taking out the kitchen trash
• Walking from the car into church
• Going through the sit/stand/kneel progression at Mass 

It’s been a learning curve for all of us on what he can and cannot do.  We try to allow him to listen to his own body and tell us when it’s been too much, sometimes with a gentle ‘nudge’ from me or Michael to try something that he probably can do, just might not prefer to do. 😉 

There are times, too, where we catch him wielding his light saber or running after little brother towards to end of his 2-hour rest period and we gently remind him that maybe towards the end of that 2 hours, he’s actually okay to do such activities in moderation, and then he sheepishly looks at us and agrees. 😉

It’s all a balancing act.   

The harder part, though, comes in with the exclusion he feels during his rest period . . . he’s had to leave events with friends early to get home to dose; he’s had to say no to playing on the street with other kids; and we’ve had to schedule – and in some cases decline – other extracurricular activities, because it won’t fit into the overall scheme of his dosing schedule and rest period.  For example, this past fall, we had him hold off on all physical related extracurricular activities . . .  he started middle school, started playing an instrument in school band for the first time ever, and we’re trying to manage OIT, so we put a temporary moratorium on sports.  Just this winter, we’re venturing back into that world, hopeful that his body has had enough time to learn what we’re trying to teach it so that the additional activity won’t be too much for him.  Wish us luck – I’ll let you know how it goes. 😉

I share all of this with you, just to show you it’s not as easy as ‘take this peanut flour kool-aid and be done with it,’ but that it’s a multi-dimensional, every-single-day commitment.  And I share, not to complain at all, but just to paint a more complete picture.  But rest assured, too, that we have many, many smooth days along the way as well.  Not every day is filled with angst and drama – many are calm and truthfully non-eventful, as OIT has become part of our daily routine now.  Once we’re finally done with it, we’re not going to know what to do with all that extra free time! 😊  Maybe we’ll spend it eating peanut M&M’s and Reese’s peanut butter cups. 😉 

Until next time,

~Momma Knows Best 🐢💚

           #goals  😃🥜