Tag Archive: oit

Maintenance for a month

Since P reached maintenance for his cow milk OIT, we have been waiting for a full month to try out dairy…

Per our MD’s protocol you should wait at least a month after graduating before adding in new dairy.  And from there you should start with amounts of protein <4 g (because his dose is 1/2 cup whole milk which is equivalent to 4 g of protein).  After that you can proceed however you wish.  This is freeing and exciting and nerve-wracking all at once.  But mostly exciting.

On day 1 he tried: 1 tsp of butter on top of his pancakes (not a true challenge since butter should have TRACE amounts of protein if any, but still…he’s reacted to it in the past so it’s a challenge)

Verdict: no reaction!

On day 2 he tried: 1/4 a string cheese (2 g protein)

Verdict: no reaction!

On day 3 he tried: a bunch of goldfish crackers (55 is considered one serving but he didn’t have close to that many, which means the protein count was significantly less than the label’s 3 g listed)

Verdict: no reaction!

On day 4 he tried: a bite of my tomato soup (one bite with a tiny bit of cream in the whole bowl is hardly a challenge at this point but he was sick so I didn’t want to add too much else beyond his dairy and peanut doses)

I will keep noting things he tries as I blog about this journey (which are always tagged as allergy FYI), but I’m already AMAZED at what oit has afforded us.  The sense of safety and peace of mind that comes from doing this is invaluable.  We can eat at restaurants! We can have friends feed him!  We can send him off with family!  I was scared to let myself dream that we’d get here, but here we are!  Funny enough, last week the “dairy” charm on his allerbling bracelet broke.  It was destiny.

Peanut OIT starts

Wellllll well well.  Day one is officially behind us.  And I will admit I had a bunch of anxiety leading up to this day.  Obviously since we completed dairy I trust the process, but having been hospitalized for peanut ingestion before, it was a major mental hurdle for me to do this voluntarily!  We are lucky to have a huge support system, including my family, and friends, and facebook group…all cheering us on and lifting me up through this.  And now we have done it!  We have begun!

We had a normal start to the day with a bowl of oatmeal followed by his milk dose and then we were off to Fremont.

Kyle came with us for this first one, so that was nice.

He started with a 1/1000 dilution of peanut powder (in cellulose powder) which he had a minuscule amount of, and he completed four (!!) updoses in that first appointment on Friday.  We will likely go every other week to really allow his body an extra long time to desensitize to the dose they send him home on.

So now I have a bunch of these little cups of powdered cellulose/peanut to mix into applesauce or yogurt or whatever.

So far so good (some nasal drip but no congestion or meds needed after Saturday morning’s dose).

He is probably getting the equivalent of a grain of flour’s worth of peanut protein but you have to start somewhere right?  This is going to be a long road, but if the end is freedom then I am all in!  I will happily trade in my fear of hospitalization for a year or so of these MD appointments.

Milk OIT graduation

I AM SUCH A PROUD MAMA!

After several months of weekly visits to the Columbia Asthma and Allergy Clinic in Fremont, my son is a graduate of the milk OIT protocol!  He will now drink 1/2 cup (120 ml – equivalent to 4 g of protein) of whole milk twice a day for the rest of his life as a part of maintenance.

After a month, we are allowed to experiment with different kinds and amounts of dairy, with the thinking being that in another few months he will achieve “free eating”, thereby tolerating any dairy.  We will see.  In the meantime, I’m just celebrating the fact that he drinks a cup of milk each day without issues.  This is major.

He has been such a trooper throughout this and is very excited at the idea of trying cheese.

Many thanks to the following, without whom/which we could not have done this:

MY PARENTS!!!!  For being supportive and encouraging and most importantly for watching Valley girl on Friday mornings while we were at his appointments. And for letting us crash at their house every Thursday night – and some Fridays.  And feeding us.  And basically just being the best parents ever.

The Davis Library.  For the amazing book on cd selection which enabled me to make it through months and months of OIT appointments without an iPad.

NPR’s Wow in the World podcast.

Highlights magazine.

Starbucks stir sticks (which served as drumsticks) week in and week out.

The entire staff at Columbia Asthma and Allergy.  They are sweet and attentive and I really feel like he is so safe in their care.

LAST DOSE!!!

Amazing.

We drove home after picking V up at my parents’ house.  Neither had napped so I expected they would both crash as soon as I set off but P was SO into the wow in the world podcasts that he stayed up the entire ride home listening to them one after the other.  We have even repeated the kissing fish one a few times and he still doesn’t care.  I highly recommend them for anyone with 4+ year olds.  It’s targeted to kids a little older than P but he still enjoys them immensely and whenever I quiz him on the facts at the end of the episode he can answer any question I throw at him!!  Guy Raz’ even makes me stay tuned, so I definitely get the allure.  Plus, who doesn’t like learning random scientific facts!?  V slept the whole way.  😉

Snack time!

Happy graduation day.  We will be celebrating with a family trip to play mini golf on Sunday.

One day at a time

Oh hi chocolate banana milkshake that is healthy.

We had planned on going to a park this morning, but P had a reaction to his am dose so I was keeping it mellow indoors until he got through it.  A few hives this time, and a pretty brutal case of congestion and wheezing, but meds and time (and snuggles) heal all. V is less understanding, but it’s all good now.  It’s easier to talk about once it’s over, because when you’re in it, you’re just kinda waiting…and waiting…and waiting…to see how bad this is gonna get before it starts getting better.  Luckily, he was fine and I didn’t have to call for backup.  Crisis averted.  We killed more time going to TJs and Nugget, and by the time we got home he was 100% again so I let them play in the backyard while I unladed the groceries and made lunches.

Back to himself indeed.

We are slowly inching our way back up to the dose he last got to at the MD office on Friday, but I’m not going to rush it.  It may be a few weeks before we get there because I want to make sure his body isn’t under too much stress.  And as a result, we are skipping the next two weeks of Friday up-dosing appointments.  This is my decision, not the MDs, but I know it’s the best for P.  I don’t want him to hate OIT and since he has been such a trooper thus far, I feel like the symptoms he’s been having are the way his body is telling us to slow down.  It may take us months to get to the end (as opposed to the 1-2 remaining appointments we were supposed to try it in before this hiccup), but we will do it the gentlest way possible.  Slow and steady wins the race!

I made an Asian ramen slaw salad for dinner with chicken and it was received with rave reviews.

P was in a MOOOOOD after a swimming (I know it’s better that he’s not napping but it’s still pretty awful after 5 pm) and was acting like he didn’t want to like dinner (regardless of what it was), but after one bite he made a complete 180 and was scarfing his portion down.

I mean, he was the one who chose which ramen noodles we got at the store!

Went to Nugget for these since Tjs doesn’t have ramen.  I saved the packets for some other use. It’s probably just like miso soup?

I should have written down the recipe for the dressing because it was A+ work if I do say so myself.  I had looked up other similar recipes the night before so knew roughly what to do.  I used canola oil, sesame oil. tamari, rice vinegar, and honey.  Then added a bunch of sesame seeds and tossed it in green cabbage, and a slaw mix.

After the lettuce was covered in dressing I added in the noodles, which I roughly crushed by hand. I let it chill in the fridge while I baked two chicken breasts, and once those were done I diced them and added them in too.

I love when I finish dinner entirely during nap time. It means coming home from our PM activity is effortless.  Or at least as effortless as anything is with preschoolers.

Yummmmm.  I would eat this back to back nights no problem.  And you could swap in anything for the chicken – edamame, slivered almonds, salmon, shrimp, whatever!

After the morning scare, this was NOT a night for skipping dessert.

Emotional eating

Ugh.  It’s been a loooong end to the week.  Weekends are supposed to be restorative and get you refreshed for the work week ahead, but they’ve been anything but relaxing these days.  Stressful, in fact.  We are too busy and as a result I’m choosing food that’s not the best for my body and it’s making me feel blah and I don’t like it.  I could make a million excuses about it, but the reality is, they are choices I’m making, soooooo…I should stop.  But food is comforting and sometimes I just want what I want because it makes me happy (in the moment).  It’s lame, but I’m pretty sure everyone on the planet makes similar choices, so I’m only human.

This is Wednesday’s breakfast…a home-made carrot walnut raisin muffin with oats and almond flour.  Topped in cashew butter.  When I have the time, I am pretty good about starting the day right.

As you can see, this was eaten at the table (and photographed!), which means I had the time. Otherwise I’m eating standing over the sink while I attempt to load the kids in the car and run out the door for whatever activity we have.  It’s a miracle thing about having kids…you can be up at 6 am and still be late for something at 9 am.  Well, that’s a lie.  I’m a punctual person so my “late” is on time, and my “on time” is 5-10 minutes early.  But you get the point.  I hate rushing with meals so it’s super important to me to try to give myself the time to eat.  Sounds basic, but it’s not always easy.

Impulse buy from TJs last week.

Yes, I know it has wheat/gluten.  I’m not going to try to justify why I think it’s ok or whatever for a low fodmap diet because to be perfectly honest, it isn’t.  It’s not terrible, by any means, though and I wanted to try it, so I got it.  And it was awesome.  But I had regurg for the rest of the day.  I’m not sure if it would have been as big of an issue had I stuck to the two shown below, but I was starving (I ate lunch way too late this day) so I went back for more and that’s where I think I went wrong.

I put avocado and Kite Hill almond cheese on top.  So yum.

After naps we picked Kyle up from the train station and went to farmer’s market.

We came home for dinner though because I didn’t feel like spending $ when we had leftovers to finish at home. I didn’t really feel like the broccoli dish, but like I said, it was fridge clean out day, so this was my contribution. I don’t even remember what I gave the kids or Kyle!!

Helllooooo lovahhhh.

Definitely went back for seconds.  New pledge: only get what I get the first time around, no seconds!  There.  It’s in writing.

Thursday breakfast!  It was a hot workout and I was in the mood for a smoothie.  I am low on Vega chocolate protein powder.  I should keep my eyes open for the next WF supplement sale. In truth, I barely had time to finish this before leaving the house.  I ended up bringing the mug in the car and shoveling it down my face between P’s preschool drop off and V’s play group (which start at the same time FYI).

Lunch salad du jour had kale, miso dressing, carrots, avocado, and salty almonds.

A weird thing started happening lately with my huge kale salads. They have started making my GI symptoms flare.  I noticed it a bit last week and then I kinda took a few days off them this week and am not sure what to make of it because I had other things that made my body feel yucky too so I need to figure out what’s up.

I am really starting to dislike Thursday nights because they are too crazy.  We go straight from soccer to tee ball and then we have to drive an hour to my parents’ house before OIT Fridays. And somewhere in there they have to eat dinner (and he has to get his milk dose but remain inactive for an hour before bed). It’s stressful trying to coordinate it all.  I won’t be too sad when the season ends in two weeks.

Because Kyle had to coach this week and I was in charge of snacks, we couldn’t cut out early either.  By the time we left the game it was already 6:30 so I knew there was NO WAY we could wait another hour to eat dinner.  So we ate in Davis (taco leftovers) before packing up the car to drive to the Bay.

OIT day!

He eats breakfast before we drive to Fremont, but I try to keep him eating fairly regularly throughout the appointment to cushion his stomach for the milk doses.

We got through SO MANY updoses!  It was really nerve-wracking to be honest, because the cumulative amount he got seemed like a ton (it was, in fact, over 3/4 a cup in a 3 hour time span).

After a 90 minute wait, he was cleared for the last dose (60 cc), so off we went to WF.

I had been on pins and needles for the last hour at the office because he was showing (very minor) signs of congestion – sneezing with a slightly stuffed up nose – but I just kept feeding him and distracting him and keeping him calm and inactive and eventually it cleared up!  Phew!

So there I am at WF, a ball of nerves with endless food options at my fingertips, and what do I want to eat?  Cream of tomato soup and a soft pretzel.  Obviously, this was a bad idea, but it was calling to me.  I went back and forth so many times before saying F&^% it and getting the dang soup.  Dairy and wheat in one sitting ohhhh buddy.  This is after my stomach was still reeling from the rye seed crackers the day before.  Oh and I had a Quest bar that morning with lots of other icky weird stuff too!  Poor gut.  I just don’t even give it a chance.

In addition to the (gluten-y) soft pretzel and (creamy) tomato soup, I had kale chips (that I brought from home). It was an amazing meal, to be honest, but probably not the best for my gut’s sake.

P napped the whole way home (which was an hour longer than normal due to major traffic) and when we arrived at my parents’ house he was totally rested and energized (and symptom free). My dad had national park quarters to add to his collection. Nerd alert!! V had recently woken from a nap, too, so they were both bouncing off the walls, while I was dragging.  I hate to say it but I was kinda dozing off on the way home.  I had NPR on (This American Life) and that combined with the traffic, I was seriously freaking out that I was going to crash!  I kept shaking my head and finally put on some music that I could sing along to.  Obvs I made it fine, but man was I exhausted when I got there.

My parents’ Costco sells kombucha (Kevita brand) and since I have gotten my whole family hooked on the ‘buch, they had some in their fridge.  It helped calm my stomach and offered a mini dose of caffeine.  I’ve never tried the kevita brand (I’m a pretty loyal GT’s person), and it was a flavor I’d never think to try (pineapple peach) but it was so good!  I asked my mom to grab me a 6 pack next time she’s at Costco because ours doesn’t have them.

We spent the rest of the afternoon in the backyard being spazzes, picking eating stuff from the garden, and keeping my dad company while he did yard work).

This carrot wasn’t ready but that didn’t stop them from gnawing on it for the rest of the afternoon.  And eating a bunch of the green tops.

They took turns a few times, but eventually she just claimed it as her own.  He was fine with it, naturally, because it was hard as a rock.

They ate parsley, rosemary, and red leaf lettuce, too before finding their way to the citrus trees.

They looooove hanging with grandma and grandpa in the backyard.

I don’t even know what they were looking at or discussing here…

But there’s V, just holding on to her carrot and lemon for dear life.

I even had to change her diaper with her holding them!

My dad grilled burgers for dinner – turkey and beef.  And we made two kinds of fries (krinkle cut were 365 brand, regular were Alexia foods) and a spinach salad (pistachios, strawberries, balsamic vinaigrette dressing).

I didn’t hold back even a little when it came to this meal.

I had seconds of fries, added extra mayo to my burger half way through eating it, and finished the avo coated GF bread off both of my kids’ plates.  It’s like I was on a mission.  I was too tired and full for dessert and ended up going to bed at 9 pm that night because I just wanted to end the day.

P was doing great after his dinner dose, and he actually fell asleep pretty quickly after we put him to bed…but I had a weird feeling about him.  It’s easy to label it as “mom intuition” in hindsight, but I really had this nagging feeling that something was off and even got up to check on him after I was in bed.  He was sleeping, so I just went back to bed.  Luckily he was in our room because a few hours later I heard him moaning followed by a weird gagging sound.  I sprang out of bed, knowing right away that he was throwing up, and raced to the bathroom with him in one arm and a handful of vomit in the other.  Sorry to be graphic.  The rest of the night was all kinds of terrible.  Kyle was a rock star helper, starting laundry and whatnot while I sat with him in the bathroom rubbing his back and holding him.  It never actually stopped until noon the next day.  He was pretty good about telling us when he was done (for the time being) and then we’d clean him up, crawl back in bed (all sleeping together) and 10, 20, sometimes 45 minutes would pass and we’d suddenly know it was time to race back to the bathroom.  We ran out of clothes pretty immediately, so he was in my socks and his tee ball jersey by the time the sun came up.

He told me playing trains would help him get energy and that would make his tummy feel better. Who am I to argue with that logic?!  Especially on zero sleep…

He wanted nothing to do with food all day, but I did get him to try a few sips of my strawberry banana sun butter smoothie.  He threw it up a few hours later though.  🙁

Aside from the intermittent vomit, he was in decent spirits!  He helped me bake cookies because I promised him the day before that we would.

They were chocolate with coconut flakes and gluten free.

The second half had walnuts because I wanted them but he didn’t, so that was our compromise.

At some point, Kyle took them off to do a secret activity (which I now know was making me a bowl at color me mine for Mother’s Day).

I had called our OIT MD already and he told us to skip the morning dose because P wasn’t eating anything, and he didn’t eat lunch either, so we decided to play his evening dose by ear too.

I couldn’t stop thinking about his poor little body, suffering as I forced him to eat such a big dinner so that he could handle his new high dose.  I should have known better than to think he could handle all that milk in one day.  I should have listened to his cues more closely.  We should have been more cautious with the amount of updosing.  Should have, should have, should have.   Now we are missing doses, which we have never done, which will probably put us back to square one. Two steps forward, one step back. It’s impossible to know what the right approach is, but one thing is for sure, once he feels better, we are slowing this process way down.  Maybe that means taking a week off every once in a while.  Or simply doing one updose per appointment.  But now that the amounts of milk are so huge, it seems reckless to drown his gut in allergens.  Especially because he is the slowest eater of all time.  To get him to eat a big meal, it takes an hour of coaxing (aka nagging) and that turns me into a person I reallllly don’t want to be.  I wish I could let him nibble away for hours on end, but that’s really not practical for oit dosing.  Anyway, I have a million thoughts on this, so I’ll cut it off there.  It’s basically all I can think about these days.  Ever since this incident I have been living in a state of controlled panic leading up to each dose, which is totally NOT THE POINT of doing desensitization in the first place!

Kyle stayed with the kids while I went to another wedding shower for my sister.   It was catered by kebab burger, which is a Mediterranean place in town and I couldn’t help but drown my worries in hummus.  The falafel and hummus were seriously amazing.  I was all but licking the plate.

Eventually I made it back to Kyle and the kids and we loaded up the car to drive back to Davis…

Which was a pretty miserable drive.

V entertained herself fine with food, but P was on the edge of melting down the entire drive (who could blame him after his horrible night and day!).  Truth be told, I was melting down too!  It didn’t help that the drive took 2 hours!!  Or that V dumped a bag of cereal all over the car (that P was feeling up to eating).  Or that we had no dinner planned and it was well past their dinner times. I am getting stressed out just writing about it again now.

I pulled together a meal of randoms, including roasted chickpeas and hard boiled eggs for the kids (P ate a little!).  I had this Caesar salad with smoked salmon, which tasted great, but caused my stomach to completely flip out (due to the dairy in the dressing).  Usually I can tolerate a little Caesar dressing, but my psychological state must have affected my gut because it wasn’t pretty.

The good news of the night was that I ended up giving P his dose and he did fine with it.  I was nervous because he didn’t eat much, but I stuck to the amount from last week (30 cc) and we sat and read books and stayed inactive until he went to bed.  Kyle and I both checked on him multiple times that night and he was fine, so we are back to where we were last week but at least he’s ok.

No dessert for me.  I was so tired I went to bed as soon as P was down at 8:30.