Celebration, Tempered.

We've been doing a lot of celebrating around here since Brendan completed egg OIT.  I'm snapping pictures of him eating foods like he's an infant.  Everything is a first:

First pancakes in a restaurant,

 first donut from a store,

 first funnel cake,

 first churro!

Brendan has decided that he loves pretty much all baked goods.  Donuts are his favorite :).  He's not all that keen on straight eggs, although, if he had to choose, a ham and cheese omelette would be his favorite way to consume them!

 Our celebration has been tempered, though-- by the same problem we had while updosing: vomiting.

Brendan has been on egg OIT maintenance for just over three weeks, and he has had two episodes of vomiting during that time.  Both times, the vomiting has been within 45 minutes of taking his daily "dose" of one tablespoon of egg white powder.  He has never vomited from eating actual egg, just the "dose" of the powder.  There are some explanations as to why he may have vomited.  The first time, we gave him his dose in milk, which never seems to go well for us.  The second time, he was on an antibiotic that can make you nauseous, so he could have vomited from the antibiotic (which we gave about 30 minutes before his dose).

However, after the second episode, the doctor on call decided that we should order a CBC (complete blood count) and check Brendan's eosinophil levels compared to when he started OIT.  There is a rare complication that can develop during OIT, for between 2-5% of kids, called Eosinophilic Esophagitis (EoE for short).  Symptoms can include vomiting, but usually the vomiting from EoE happens well after the child ingests the allergen, not within 45 minutes of eating the offending food like Brendan's vomiting happens.  EoE is a different kind of allergic reaction in the esophagus and/or gut, caused by white blood cells called eosinophils.

The total eosinophil level found in the CBC, while not an actual test for the disease, can be an indicator of whether or not the disease may be present.  The only way to actually test for the disease is to do a scope of the esophagus and take a biopsy.  If the CBC shows a significant rise in total eosinophil levels when comparing them to before we started OIT, Brendan may have eosinophilic esophagitis, which makes it very difficult (but not entirely impossible) to continue with OIT.

We had the blood drawn on Tuesday afternoon, and I waited on pins and needles.  We continued with his daily doses, and kept baked goods in his diet, but we stopped giving him straight eggs until we got the results back.  We also stopped the antibiotic, since that may have caused his second episode of vomiting (the antibiotic was for a face rash, so not any life-threatening infection!).

On Friday afternoon, I got the results.  Brendan's eosinophils are a bit higher than when we began OIT, but the are not high enough to be an immediate concern for EoE. So, as long as Brendan continues not to have symptoms with his dosing, then we are free to eat eggs again, and we are free to continue our celebration.  On Friday afternoon, we celebrated with a reindeer brownie snack!

 We have switched Brendan's dosing to the morning, since he has never vomited from a morning dose, and we will figure out how to cure the face rash later.  We are hopeful that these changes will keep Brendan from vomiting his dose, and that in a few months, we can say with certainty that we've kicked this egg allergy in the behind!  For now, our egg celebration continues, tempered by Brendan's struggles, but a celebration none-the-less.

SUCCESS!!!

6 and a half months. 

25 trips to Dallas. 

390 doses of egg white powder.

Late nights.  

Early mornings.

Driving.

Flying.

Waiting.

Hoping.

All culminated with this:

Egg.  

Rubbery, four hour old egg.

  And he ATE it.

 ALL of it.  

And he was FINE.

No Epipen needed.  

No ER visit required.

THIS is what living feels like.

On November 10, 2015 we were set FREE from Brendan's egg allergy!!

OIT is AMAZING.

Egg down.  

Peanuts and tree nuts: we're coming for you!!

A Flying Updose Day in Pictures

I know I promised this post a couple of weeks ago, so I figured I should get around to it!  Here is what our day is like when we fly for updoses :).

6:30am: Brendan eats his morning dose at home.  Our updose appointment is scheduled at 3;15pm, so by the time the doctor checks him out, he'll be eating his updose at 3:30pm, exactly 9 hours after his morning dose.  Doses need to be 9-15 hours apart, so timing doses on updose day is super important.  Note: This picture may or may not be staged with absolutely no food on the spoon or in the bowl because someone may or may not have forgotten that she promised an updose day in pics on the blog!!

Headed to school at around 7:45 am.  We watch Brendan for the first hour after his dose each day and then send him to school.  He cannot exercise until 2 hours after his dose, so the school made sure to schedule his P.E. after 9am this year.  Brendan will go to school until 11:15am this morning, and then we'll head off to the airport.  When we fly for updoses, he gets an extra hour in school!

8:30am:  After I take the boys to school, I head home and pack up.  Believe it or not, this backpack and a small lunch box are the only things we take with us to Dallas each week.

8:30am Continued:  These are the items that "live" in the backpack.  I keep these items packed each week so that I don't have to repack them.  We bring a very minimal change of clothes and toiletries just in case we get stranded.  Also living in the backpack are a clipboard and pencil for school work, a can of Pringles for carbs just before the updose and a pack of wipies to wipe down the seats of the airplane once we board.

9:00am:  I add Brendan's meds and my wallet to the bag, as well as a water bottle (not pictured) and a few electronics (also not pictured).

9:00am Continued:  I also add the things we'll need for our updose.  We carry a letter with us form our allergist that allows us to carry on pudding, yogurt, applesauce, a cool pack, and liquid solution (diluted eggs or nuts) if needed.  Next, I pick Brendan up from school at 11:15am, and then we head to the airport!

So, I may have had another serious memory lapse about taking updose pictures again. Sorry!!  Here's what's not pictured:  It takes us about 30 minutes to drive to the airport. We park off site and take a shuttle to the airport.  Our flight is usually scheduled for 1pm.  Back to the pictures: 12pm:  Once we're through security, we fill up the water bottles we've brought with us.  We also take a seat and eat the lunch we've packed.  We'll buy dinner on the way home, but to save money, we bring lunch with us!

12:15pm: After we've eaten our lunch, Brendan works on school work until it is time to board the plane.  He has an app that allows him to practice his spelling words on his iPad.  He also usually has a few worksheets from the classes he'll miss while he's gone.  Our flight leaves at 1pm and will land in Dallas at 2pm.  Everything is running on time today, thankfully!

2pm:  We're here!!  At Love Field, you head to the lower level and find the "transportation network" signs if you want to use Uber to get to your location.

2:10pm:  We have an Uber driver enroute.  Unfortunately, it was this driver's first time picking up at Love Field, and he got lost.  It took him 20 minutes to find us.  Luckily, I've got extra time built into our schedule for mishaps like this.  Our appointment isn't until 3:15, so we've still got over an hour before we need to be at the office.

2:15pm: Airport selfie!! Still waiting for the Uber driver. . .

2:28:  We're finally on our way!!  The total trip takes about 15-20 minutes.  I snapped this picture about half way through the drive.

3:30pm:  Updose time!!!  That's 2 teaspoons of egg white powder mixed into pudding!!  We're SO close to the final dose of 3 teaspoons!!  After Brendan takes his dose, they set the timer for 45 minutes, and we wait. . .

3:45pm: The dose is in, and we wait for 45 minutes to make sure Brendan doesn't have a reaction.  He doesn't!  All is well!

4:40pm:  We wait outside the doctor's office for Uber to come get us.  It usually takes about 10 minutes for Uber to arrive to the doctor's office.  At the airport, it usually only takes about 5 minutes to get a driver (except for today and our poor new Uber driver!!).

4:50pm:  And we're off!!  This Uber driver knew exactly where he was going!

5:15pm:  We seem to hit the airport "rush" hour on our way back from our appointments.  There is almost always a long line for security in Dallas.  That's not a problem, though, since I schedule our flights with plenty of wiggle room.   Our flight isn't until 7pm!

5:45pm:  We buy dinner in the airport.  So far we've tried a burrito place that's similar to Chipotle, Chili's, and of course, Chick-Fil-A.  I am thankful that there are several safe dinner options for him in the airport!

6:20pm:  We should board our 7pm flight around 6:30.  I know many people have questions about flying with peanut allergies, so I thought I'd take a minute to inform you about how flying with a peanut allergy works on Southwest.  When I make Brendan's flight reservation, I click on a link that asks if he has a disability.  Then, I select the "peanut dust allergy" option.  When we arrive at the gate after security, I ask the gate agent to print out two forms: his "peanut dust allergy document" (at the top of the pic), and his preboard authorization (at the bottom of the pic).  We will preboard with others who have disabilities.  This gives me a chance to wipe down Brendan's seat, tray table, and surrounding areas, since Southwest routinely serves peanuts on their flights.  When we board the plane, I give the peanut document to the flight attendant and he or she sees to it that there will be no peanuts served on our flight.  They serve pretzels instead to everyone on the flight.  The pretzels are not safe (cross contamination with nuts), so bring your own snack to eat!

7:15pm:  Our flight was delayed by a few minutes, but we're finally on board and ready for take off!

Our flight must have made up time in the air because we land just a few minutes after 8pm.  We head to the parking shuttle, grab out car and then head home.  It's 8:54 when we pull into the driveway.  When we drive, we usually arrive back home about half an hour later.  So, in all, flying saves us about an hour and a half of time and a TON of energy!!

How we afford to Fly for OIT (How to earn a Southwest Companion Pass)

I have been asked several times about the ins and outs of traveling for OIT, so I decided I should create a few blog posts about it.  This first one is a question I get a lot:  How on EARTH can you afford to FLY to some of your OIT appointments?!  It's a really good question.  Normally, flying is very expensive.  While it costs us about $100 a trip (including our $35 doctor's co-pay) to drive to an  OIT appointment, a single plane ticket from Houston to Dallas can range between $150-$200.  Times that by two, and that's a TON of money every week.

So how DO we afford to fly?!  Four words: Southwest Airlines Companion Pass.

The Southwest Companion Pass is among the best of airline frequent traveler perks.  Once you earn a Companion Pass, you can designate a person to be your companion, and that person travels for free for the remainder of the calendar year in which the pass was earned, PLUS the ENTIRE next calendar year.  Brendan will fly for free with me until December 2016.

This is what happens to your Companion Pass picture when you are too lazy
 to run it through Photoshop to blank out the personal details!!

So, how does one earn a Southwest Companion Pass?  You need to earn 110,000 qualifying points (miles) in a calendar year, or fly 100 round trip flights in a year.  Since the latter isn't going to happen for most of us, let's focus on the former.  Once you earn 110,000 points, you can automatically designate a companion and that companion flies free.  You can also USE those 110,000 points for your airline tickets.  So, not only does Brendan fly for free, but by using those 110,000 points, I have been able to fly for free also!

I know, 110,000 miles sounds like a TON, until you look carefully at Southwest's credit card sign up bonuses.  So, without further ado, here is how I earned a Southwest Companion Pass in about 6 weeks without flying a single mile:

Step ONE:
Wait for a 50,000 point bonus sign up for at least 2 of Southwest's cards.  Southwest offers these bonuses several times a year.  DO NOT sign up when the bonus is only 25,000 points.  It won't be enough to get you your pass!  Southwest offers 3 cards:  A Plus Personal Card ($69 annual fee), a Premier Personal Card ($99 annual fee), and a Business Card ($99 annual fee).  You will need to apply for two of these three cards in your name (or the name of the person who will be attending the OIT appointments with your child).  You WILL have to pay the annual fees for the cards.  $169, is not bad for a year's worth of free flights, though!!

I applied for my cards within about 10 days of each other.  It is possible to be approved for both of the personal cards in a very short time period-- some people have even applied for both on the same day.  One thing I learned: Don't apply for the business card unless you have an actual revenue-generating business.  I, at first, applied for a personal card (approved immediately) and then the business card (thinking that it would be hard to be approved for two personal cards).  I used some contract curriculum writing I had done as my "business."  I was not approved for the business card.  However, a few days later, I got up the courage to apply for the other personal card.  I was immediately approved.  So, in my experience, it was easier to get 2 personal cards, than a personal and a business card.  YMMV.

Step TWO:
Charge the minimum spend on each card in order to receive the 50,000 point bonus on each card.  The minimum spend is usually $2,000.  We put all our monthly expenses on these two cards.  We were at the minimum spend limits in no time.  So, at this point, you'll have the two 50K bonuses, PLUS you'll have 4K in points from your spending.  You'll be at 104,000 points, only 6,000 points away from a companion pass!

Step THREE:
Get the 6,000 points.  There are a couple of ways to get the extra 6,000 points needed to earn the companion pass.  The most straightforward way is to charge $6,000 onto one of the cards.  Have a big vacation coming up that you were needing to pay off anyways?  Does your kid need braces?  $6,000 can add up quickly if you have a few big expenses to take care of.

PLEASE NOTE:  I am in NO WAY advocating racking up credit card bills you cannot pay for.  We make it a point to NEVER pay interest on credit card charges.  We pay off our bills, in full, every month.  If you go this route, please use your credit responsibly and only charge items that you can pay off quickly.

Another way to get the extra 6,000 points you need is to use a hotel points program that allows you to convert your points into Southwest points.  I did not use this method, but several websites insist that converted hotel points do, in fact, count towards a Companion Pass.  You will lose points in the conversion process, though, so unless you have a ton of these hotel points laying around, I do not suggest going this route.  Also, please note that Chase Ultimate Rewards points DO NOT count toward the Southwest Companion Pass, so do not try to use those points to achieve a Companion Pass.  The only work around to this problem is to transfer the Ultimate Rewards points into hotel points (Hyatt is an option), and then transfer those hotel points into Southwest Points.  You will lose points in this deal, though, because of the transfer rates.

Once you have earned the last 6,000 points, you will have a Southwest Companion Pass PLUS 110,000 points to spend on flights!  So, that's how we afford to fly to some of our appointments.  When you add up the 9/11 security fee for the tickets ($11.20 per ticket), plus parking at the airport and taking Uber to the doctor's office, it costs us about the same to fly FOR FREE, as it does to drive.  Flying is a nice break in the driving schedule, though!!  The Companion Pass has been a lifesaver for us!!

Up Next: A Flying Updose Day in Pictures (If I remember to take pictures tomorrow!!).

It's a Marathon, Not a Sprint

That's become my new OIT motto.  A lot has happened since I last posted.  School started.  My hubby and I went on a WONDERFUL two and a half week trip that included a Transatlantic cruise.  AND Brendan has moved to "measured" doses instead of capsules for his egg OIT!!!  Can I hear a hallelujah and an amen?!

My sweet OIT boy on the first day of school :).

This new step means several things:

1) No more baking soda in doses.  The capsules have a bit of baking soda in them to help the egg white powder not stick to the capsule.  At first, it's hardly noticeable because the capsule doses are so small-- The first capsule dose is only 100 milligrams.  But, when you near the end of the capsule doses, you are taking a whopping 1200 milligrams (three good sized pills) full of egg white powder plus a bit of baking soda.  Brendan definitely noticed the taste near the end, and it was getting hard to cover up in our usual go-to, chocolate pudding.

2) I order my own egg white powder now.  I have a TON of the stuff, in fact.  I look like a drug dealer.  Since I have powder to spare, I can start experimenting with ways to make Brendan's dose more palatable, and I can taste the experiments myself.  We've been so busy that I've only done a little experimenting, but I plan to do more in the near future.

You thought I was kidding about the drug dealer thing, didn't you?!

3) Technically, we're only supposed to have 3 more updoses after this point.  "Technically."  That brings me back to my new motto:  It's a marathon, not a sprint.  Brendan has not sailed smoothly through all of his doses.  His main symptom seems to be nausea and/or vomiting.  It has only happened a handful of times, and it's always been within 30 minutes to an hour after taking his dose, but it has still happened enough to know that Brendan may not be able to tolerate the big jumps in doses that these last few weeks of the protocol usually require.  He is currently at 3/4 of a teaspoon of egg white powder.  Per the protocol, that amount would be DOUBLED next week to 1 and 1/2 teaspoons.  But because of Brendan's tendency to not tolerate large updoses well, he will be increasing to 1 teaspoon instead, and then hopefully 1 and 1/2 teaspoons the following week.  It's a marathon, not a sprint.  I am cautiously optimistic that we will reach the 1 tablespoon goal, it's just not going to be in the next three weeks.  Maybe by Thanksgiving.  Maybe by Christmas.  Maybe not until Easter.  It's a marathon, not a sprint, and we are prepared to go the distance.

Baby Steps

It's been a whirlwind of a summer.  VBS, a trip to Great Wolf Lodge, Camp "Memaw and Grandpa" for the boys, Preteen Camp for me and Brendan, and then a family trip to Washington D.C.  In the midst of all of that activity, we have still traveled to Dallas once a week to increase Brendan's egg doses.  On April 30, Brendan's first day of OIT, we left the office with instructions to eat 6 milligrams of egg twice daily.  By mid-July, Brendan had increase his dose 100 fold, to 600 milligrams of egg.  Things were running so smoothly that I began to count down to the end of egg OIT, and to Brendan's graduation day.

Our family in front of the Capitol building in D.C., under scaffolding.
A reminder that we're all works in progress :).

But 600 milligrams would prove to be a tough dose and stick us in neutral for three weeks.  First there was the vomiting at my parents' house during Camp Memaw and Grandpa on his 600 milligram dose.  Then, there was a stomach ache (we managed NOT to vomit that time!) from his 900 milligram dose the next week at Preteen Camp.  We tried once more to updose to 900 milligrams and got a stomach ache in the doctor's office that time.  So, for three weeks we tried to push forward, but kept stepping back to his 600 milligram dose.

At our updose appointment this week, the PA had a different idea-- one that had been in my mind, too.  How about a baby step up from 600 milligrams?  And so we tried it.  750 milligrams.  No problems in the doctor's office.  No problems at home so far, either!  We are finally moving forward again!

That scheduled graduation date that I've had in my mind has been pushed back a full month now.  I have decided to take things one step at a time now, and not think about exactly when Brendan may graduate.  The idea of omelettes and fluffy pancakes from a restaurant still swirls around my mind.  We will get there someday-- if we make great strides at each appointment, that will be wonderful.  But baby steps will get us there, too.  Slow and steady wins the race.

Rocket Science?!: Crafting the Perfect Egg Dose

We're on our second week of dosing with egg white powder now, and I've learned a few tricks along the way.  I know, I know.  You're thinking: "REALLY?! You're blogging on how to give your kid a dose of powder?!  How hard could it be?!  It's not like it's Rocket Science!!!"

Well, I may be a little slow, but the first powder dose I prepared at home went DISASTROUSLY, and ended with me throwing out the entire dose and starting over :(. So, I thought I'd share the lessons I learned here so others can learn by watching instead of by wasting a dose or two at home :)!!

Dosing with powder is definitely harder than I imagined it would be.  You want to make sure that your child ingests every last speck of the powder, or they're not getting a full dose-- achieving this feat can be trickier than it sounds!

Our office sends us home with pre-measured capsules filled with egg white powder (ask me about last week when they forgot to order our capsules and sent me home with a scale instead-- BAD IDEA!!!  I may have to blog later about that little mis-adventure.).  For now, here's what the capsules look like:

The amount of egg white powder that Brendan is ingesting
seems tiny again when it's packed inside a capsule!

All I have to do is open the capsule, pour out the powder onto a spoonful of some sort of food, and then feed it to Brendan. Sounds simple enough, right?!  Except when the capsule won't open, and when it finally does, it pours out everywhere, not just onto the spoon. . .  So here's how I prevent that little problem:  I put a small amount of food onto the spoon (usually pudding or whipped cream)-- that gives the powder somewhere to "stick" to.  And here's my pro tip of the day: I place the spoon inside a small bowl.  If any powder drops out when I open up the capsule, the bowl catches it.  Then, I can retrieve the lost powder, usually with the tip of the spoon.

See?!  Some of that little bugger fell right off the spoon and into the bowl!!!
The first time I did this (without my trusty bowl) it fell onto the counter,
and then when I tried to get it back onto the spoon, it fell onto the floor!!

Sometimes, not all of the powder falls neatly out of the capsule, so I use a toothpick to get the rest out when needed.

There's powder stuck inside this capsule.
If it won't fall out with a few squeezes, I'll use a toothpick to dig it out.

After I'm sure I have all the powder out, I use another spoon to put a small amount of food on top of the dose to hold it in place and to disguise the taste a bit. Don't be fussy with this part-- you'll end up with powder on the second spoon if you try to get the dose perfectly covered.  I also try to pick up those stray bits that fell into the bowl with the tip of the spoon.

We dirty four spoons a day just for dosing--
it seems like we never have clean spoons around here!

See that little bit of powder at the top of the spoon?!
That's the part that fell into the bowl initially.

Then, the dose goes down the hatch, preceded by applesauce (it helps the tummy), and followed by a drink of water to make sure it doesn't linger in his mouth!

And that, my friends, is how you prepare the perfect OIT powder/flour dose!  Rocket science?  Not quite, but definitely more difficult than I imagined!