An Updose Day in Pictures

Wondering what an updose day is like for us?  Here's a little pictorial account of our updose last Thursday (5/21).

5:55am: Brendan needs to eat breakfast before his dose.
Our appointment is at 3:15pm, and he needs to take his dose at least 9 hours before his appointment.
Eat quickly, dude!!

6:05am:  We've found that taking apple sauce right before his dose helps prevent tummy aches.
I need to buy stock in Go-Go Squeez.

6:10am: Egg-i-cine down the hatch.  This is 15 milligrams of egg.
He will updose to 20 milligrams this afternoon.
He takes a sip of milk or water right after the egg to avoid an itchy mouth.

6:20am:  We are supposed to bring back the glass bottles that contain our solution each week.
Since I need to run it through the dishwasher, I empty it out right before our dose.
Instead of throwing the egg-i-cine away, I freeze the extra, just in case we don't make it to an updose for several weeks.
I also pack one dose full in a syringe to take with us-- just in case we don't make it to the doctor's office for some reason.

6:50am: Sunbutter and jelly sandwiches for everyone's lunch!  We'll eat our lunch on the road.

6:55am:  An unexpected bunny in our driveway!!
Not really updose related, but he was a highlight of our morning!

7:30am: Off to school!  Little brother will stay all day and Grandpa will get him off the bus.
 Memaw and I will pick up Brendan at 10:15am to start the trek to Dallas.
Memaw has made the trek with me for a couple of weeks.  She is the best mom/grandma EVER.
It makes it so much easier to have another driver and some company!

8:00am: I totally had my act together enough to take a walk in the neighborhood on this particular updose day.*
*Perhaps, I shouldn't call this post a "typical" updose day!!

8:09am:  I checked the traffic just for a later comparison.
We live where the blue dot is, at the bottom right hand corner, which is ENTIRELY the WRONG side of Houston to live on when one drives to Dallas every week.
It takes between an hour and an hour and a half to get to the top of the map, which are just the northern suburbs of Houston.  Those yellow and red lines aren't good!!  Luckily, by 10am, traffic should calm down.

9:45am: Time to pack!  On the right is Brendan's ice pack for his dose later, that dose I drew up "just in case," a couple of applesauce packets, and his cooler bag that will keep his solution cool when we drive home.
On the left are some snacks for the way there (and just before he updoses), his meds (he carries an Epipen on him at all times, and I keep the second Epi in my purse along with benadryl)-- these meds are his evening meds, plus his rescue inhaler, just in case.  He will take the evening meds on the drive back home.
In the Ziploc next to his meds are his jammies-- he'll change into those in the car on the way home.

9:50am: Still packing: Our lunches for the way there, tablets to pass the time, plus an external hard drive with a ton of movies on it, his pillow and blanket, and a suitcase with clothes for tomorrow and toothbrushes (just in case we end up staying the night somewhere between here and Dallas).
I keep the suitcase packed now, so all I have to do is drag it out every week.

10:12am: Quick traffic check!  It looks much better now.
I run into the school and retrieve Brendan.
I give him car sickness meds and make sure he goes to the bathroom right before we leave, because we won't stop for 2 hours!

12:15pm: Quick stop at Buc-ee's to use the restroom and grab a snack.
Aren't Memaw and Brendan cute?!
For those of you not from Texas, I am truly sorry that you don't have Buc-ee's.
It is simply the best place to pee, EVER!!  I present exhibits A and B below!  

Exhibit A: Those are all restroom stalls, and that's just HALF of the women's stalls!

Exhibit B: A CLEAN toilet!!  Thank God for Buc-ee's!!

12:30pm:  Switching drivers!  Memaw's behind the wheel now!  Like I said.  Best. Mom. EVER.

2:22pm;  We roll into Dallas almost an hour before our appointment.
That's a RECORD!  One week, we squeaked in without a minute to spare.
We take a few minutes to fill up the gas tank-- that will save us time on the way back.
Also, we notice something.  It's WINTER in Dallas.  Yes, you people from up North probably think I'm crazy, but it's the end of May here, we don't do "61" in May.  Period.  Especially not at 2pm.
We have been having some CRAZY weather, but I'm sure you've heard about that.  Brendan and I are freezing in our shorts and t-shirts!  Oh well.  Mental Note: Check the weather before we leave next week.

3:30pm:  Updose is in, and we are waiting our 45 minutes before we can head back home!

4:15pm: It's another RECORD!  We are leaving the doctor's office now.  No reaction from the updose.
We just might make it home before 9pm!! Hooray!!

6:30pm: Our only stop on the way back: KFC/restroom break.
This is Brendan's "I'm trying to watch a movie and smile at the same time" face!
I forgot to take our last victorious picture, because I was SO ready to be home, but we pulled in the driveway at 8:30pm.  That's another record!!  Another updose day in the books!!
Only about a year's worth of weekly drives to go. . .

Space to Dream

It’s a small space in my mind, tiny really: Just enough room for a soft pillow, a warm drink, and a bit of day dreaming.  But it’s there.  And it hasn't been before.  I've never let it have even a square inch of room until now.  It’s the tiny mental space where I dream about life after OIT.

Until now, I couldn't let myself devote even a millimeter of thought-space to dreaming of a life after food allergies.  But we’re on this OIT journey now, and it’s going WELL (as I type I’m frantically searching for a piece of wood to knock on!).  Brendan had a few minor stomach aches in the beginning, and there was that one day he made himself a sandwich with expired spinach and I was left wondering whether he was suffering from food poisoning or if we were on the road to Eosinophilic Esophagitis (a deal killer for OIT).  But for over a week now, he’s had NO REACTIONS.  Not one.  I’m beginning to forget to log his doses in my handy-dandy spread sheet because they've been so uneventful.  And so, I've allowed myself just a teeny corner of my brain to DREAM. 

What will life be like if we are successful on this OIT journey?  What sorts of dreams do I have for Brendan?  Most parents dream that their children will grow up, go to college, and have a successful career and family.  I dream those things for Brendan, too.  But right now?!  Right now, I dream about finishing OIT and then taking my sweet boy to Disney World—running into Goofy’s Candy Company and allowing him to pick out whatever over-priced, sugar-laden treat he wants.  I dream about him attending a birthday party and being able to eat the cake.  About going to sleep away camp without his mom as a chaperone.  About letting him keep all his Halloween candy and eat it until he gets sick—not the terrifying Epipen-inducing kind of sick we’re used to from food—that good ol’ “I ate too much candy” tummy ache instead.  Buying a tray for lunch from school, heading to IHOP for breakfast, ordering anything he wants off a menu—all of these will be firsts for my boy if we are successful in OIT.

Brendan showing off some safe snacks at Summer Camp last year.
One day he might be able to go to camp without me tagging along!

It is still early.  Lots could go wrong and halt us in our tracks.  That’s why my dreaming space is still so tiny.  But it’s there, tucked away behind the everyday reality of living with food allergies.  And it never has been before.   

Rhythm

Our OIT journey is a new, exciting adventure.  But with “new” and “exciting” life can get thrown just a bit out of whack.  And so we are adjusting, and finding our new rhythm to life. We have tweaked Brendan’s daily schedule to fit his new dosing requirements.  He must dose twice a day, between 9 and 15 hours apart (12 is ideal).  Then he needs to keep his heart rate and body temperature down for two hours post-dose. For the first hour after his dose, he needs to be closely monitored. AND he needs to dose on a full tummy.

I spent hours trying to adjust his schedule in my mind so that it meets the new dosing requirements.  He’d need to wake up just a bit earlier, and instead of getting dressed first, he’d need to come straight to breakfast.  After school, I used to make him do his homework right away, and then he could play later.  We’d have to switch that around.  Play first and then do homework after his dose.  Bath time would need to be moved to before dinner so that his body temp wouldn’t be raised right after his dose.  LOTS of little changes.

For the most part, the daily changes have worked out well.  The boys are loving being able to play right after school instead of doing their homework right away, and I think they’re actually getting their homework done more quickly after dinner.  It’s tough ripping myself out of bed 10 minutes earlier every morning, but I’m sure I’ll adjust!  We are definitely finding our new daily rhythm.

Brendan's egg solution. We call it his "egg-i-cine" ;).
He's now up to 10 milligrams of egg per dose.

Next up:  Finding a rhythm to updose days.  I’m not gonna lie.  Updose days are TOUGH.  We travel 9 hours, round trip, to updose.  We updosed for the first time yesterday, and among other adventures, attempted to stop at a closed Chick-Fil-A for lunch (BOO!!  If you remodel, please cover up your restaurant’s highway exit sign!), encountered the freeway shut down to one lane, ran into “rush hour” traffic at 3pm in Dallas (I would complain about this one, but being from Houston, where rush hour is 24/7, I should have known better!), and due to a switch in computer systems, got to fill out ALL THE NEW PATIENT paperwork AGAIN before they saw us for the updose yesterday.  We left our little suburb of Houston at 10:15am.  We pulled back into the driveway at 9:39pm last night.  We have not found our updose rhythm yet!

We found this cute pillow during our adventures yesterday.
I had forgotten to bring Brendan's pillow with us.  He LOVES elephants, so this one was perfect!

We did have a few updose rhythm “wins” yesterday.  Despite the 3pm “rush hour” traffic, I still think 3 or 3:15pm is the best time to updose.  It allows Brendan to attend the first few hours of school on updose days, and if we didn’t have to complete a gagillion new patient forms yesterday, we would have been out of the office by 4:30 and back home by 9.  So, we’ll try 3pm for a few more weeks, and see if we can make that rhythm work.  Other wins: The Whataburger in Ennis is right next to a gas station and is on the right side of the freeway.  We’ll be stopping there for dinner again J.  I used Brendan’s dyslexia app, Learning Ally, to download a few audio books for me.  He’s a happy camper watching movies on the iPad, but I get bored in the radio station dead zone between Houston and Dallas.  I’m listening to the Maze Runner right now.  It, along with phone calls to/from friends and family, made the drive much more enjoyable for me.  My mom has also volunteered to come along some days, so having company AND an extra driver will be great! 

We will find our updose rhythm, and soon I will be your go-to gal for questions about the drive between Houston and Dallas.  I can already tell you that the Chick-Fil-A at exit 87 is closed, but the one at exit 94 is ready and open for business.  And if you can’t wait until Buc-ee’s for clean restrooms, you can stop about 20 miles north at Woody’s Smokehouse.  Change is hard, but we will settle into our rhythm, and while a 9 hour round trip drive may never be easy, I can certainly tell you that it’s going to be worth it.

OIT Day One Packing List

Day One of OIT is LONG!  If your child makes it to the max dose, it will take about 8 hours.  If you’re “lucky” like us, and have a minor reaction in the middle of the day (even a teeny face rash will do it), it could take even longer.  We got to the doctor’s office at 8am and left right around 5pm: a full day’s work!  So, what do you pack for an 8 or 9 hour doctor’s visit?!  Here are some things we found helpful to have:

1)   SNACKS.  LOTS of snacks.  Try to pack carb-heavy snacks.  It is important to keep your child’s tummy full during the updosing process on day one.  Be sure to consider other kids’ allergens who may be hanging out with you that day (in our office at least, all the OIT kids share one big waiting room).  We stuck to simple snacks that only had wheat as an allergen: Pringles, pretzels, Oreos (those have a bit of soy in them, too).  Lucky for us, there weren’t any wheat OIT kids hanging out with us during our day one.

2)      Applesauce.  I know, I just mentioned “snacks,” but this one deserves special mention.  There has been at least one study showing that apples can aid in digestion of allergens: http://www.foodnavigator.com/Science/Apple-polyphenols-may-ease-food-allergy-Nestle-study Some OIT docs even mix the allergens in apple sauce.  We brought a ton of the Gogo SqueeZ apple sauce packets along, and I think they really helped.

3)      Drinks.  Your child will need to take a drink each time he has a dose to wash the allergen out of his mouth.  If the allergen sits in his mouth, it can cause an itchy tongue and/or cheeks.  We brought refillable water bottles and some Capri Suns along.  We only used the water bottles, though.  Brendan prefers water over most other drinks.

4)      Lunch.  THEIRS and YOURS.  Don’t forget that you’ll both need to eat lunch while you’re waiting.  Our waiting room had a microwave, but not all offices may have that luxury.  Pack something simple and easy.  I brought along two sub sandwich Lunchables for us.  If we throw out the mayo packet, they are safe for Brendan.  Also, try to stick with something tried and true.  Today is not the day to introduce new foods!

Hanging out in our comfy OIT waiting room.
Photo Credit goes to Viji Siddharth, a fellow OIT mommy!

5)      Entertainment for BOTH of you.  You’ll be in the doc’s office for an entire day.  Bring along the iPad, portable DVD player, or whatever else will keep your kiddo and YOU entertained and happy.  Our doctor has a great OIT waiting room with comfy recliners, a TV with a DVD player, a small TV hooked to a gaming system, board games, and a table and chairs to play board games or do school work.

6)      School Work.  Ask your child’s teacher to send home his or her missed school work the day before your appointment.  There will be plenty of time to work on it.  Also, make sure you have all the necessary items to complete the school work: lined paper (yeah, we forgot that one!), pencils, a small sharpener, and a clip board in case there is not a table or desk available to work at.  One more note:  I made Brendan do his school work first thing in the morning, but I wish I would have waited.  Our OIT waiting room was hoppin’ early in the morning with lots of updose kiddos, and Brendan was stuck trying to work while DVDs and video games were being played around him.  At around 11:30am, when Brendan was finally done with his school work, the waiting room became very quiet because kids don’t usually updose in the middle of the day (it throws the whole dosing schedule out of whack).  At around 2:30pm, the place started hoppin’ again.  If I could do it over again, I would have let Brendan hang out with the other kids in the morning, and then work on his school work mid-day when no one was around.

7)      A change of clothes for BOTH of you.  You don’t want vomit to happen on day one of OIT, but it very well could, and it’s likely that both of your clothes may need changing if it does.  Pack a change of clothes just in case.  Hopefully, you won’t need them.  We didn’t!

8)      Hoodies or light jackets.  Doctors’ offices are notoriously cold.  Bring a hoodie along for each of you to avoid being uncomfortable all day. You could also bring a blanket for your child if he gets cold easily.

9)      Finally, depending on your waiting situation, you might want to bring along a bean bag chair.  Since we get to wait in a room full of comfy recliners, this wasn’t needed for us, but if you end up in a regular patient room all day, a bean bag chair could be a great, portable, comfy seat for your child.

I hope you found this Day One OIT packing list helpful.  I want to give a shout out to those on the Private Practice OIT Facebook group who gave me many of these suggestions before we left for our Day One!  If you’ve already experienced Day One, what are some things you are glad you brought along?  Comment below!

Six Grains of Sand: OIT Day One

We arrived in Dallas after my sweet boy’s bedtime on Wednesday, April 29.  After a quick bath, he hopped in bed. 

“Are you nervous about tomorrow?” I asked. 

He shook his head yes, and added, “Just a little bit.”

His entire life, he’s been taught to avoid egg.  The following day, he’d be encouraged to eat it.

He’s the bravest kid I know.

Just twelve hours later, we were sitting in the comfy OIT waiting room in Dr. Silver’s office.  And there it was: a syringe filled with Koolaid.  But this wasn’t your everyday cherry Koolaid.  This was a solution of Koolaid and egg white powder: 300 micrograms of egg.

Brendan taking a dose of egg white powder solution.

In an effort to wrap my mind around how much egg my child was ingesting in that first syringe, I came across this fact: a single grain of sand, weighs, on average, 50 micrograms.  Brendan was eating six grains of sand worth of egg powder.

The first and second doses (both 300 micrograms, 15 minutes apart) went well.  He moved to 400 micrograms, eight grains of eggy sand, for his third dose.

“My tongue’s a little itchy,” he noted, “and my checks are itchy, too.”

Sure enough his little face was just slightly flushed.  We parked at 400 micrograms for an hour, waiting to see if the reaction would increase or simply disappear.

A face rash only an allergy mom would notice ;).

An hour later, feeling less itchy and decidedly less flushed, my brave little man soldiered on.  Each dose was given twice, 15 minutes apart, as we watched carefully.

Hours passed.  Hundreds of micrograms turned into single milligrams—8 grains of sand turned into 80.  Another itchy tongue and slight tummy ache both dissipated before the next dose.

By the end of the day, Brendan hit the target dose for day one and was ingesting 6 milligrams of egg white powder.  That’s 120 grains of sand, .001 of an egg, or 0.1% (yes, one tenth of one percent!).

 Yes, I got my zeros right. Brendan’s current dose is 6 milligrams.  His final maintenance dose will be a full tablespoon of egg white powder, 5,220 milligrams, the equivalent of one egg. He will take his 6 milligram dose twice a day for a week, and then we’ll head back to Dallas to updose.

6 milligrams down, 5,214 to go.  Our journey that started with six grains of sand will hopefully end in FREEDOM (with an omelet on the side, of course).

The infamous bulletin board of OIT grads.
Hopefully, Brendan's face will be on this board on day :).