The big 5-0

Nope, this isn't a post about how old I feel because I've been going to Dallas almost weekly for a over a year.  5-0 will be the number of our next allergist visit in Dallas.  50 appointments in about 18 months.  Wow.

Visit number 48-- eight peanuts and hazelnuts, plus a little math homework!

Visit number 49.  10 peanuts and hazelnuts, and you guessed it,
more math homework!

I joked with the staff last week that there should be a punch card-- every 50th visit should definitely be FREE!!! Alas, there is no punch card, but there is something better coming.  Our 50th visit will be our FINAL updose.  Brendan will eat 12 peanut and 12 hazelnuts, and the very next week, he will challenge both nuts by eating 24 of each.  If he passes, we are DONE with OIT!!!  I can't even believe we are almost there.  Brendan has come such a long way in the past 18 months.  18 months ago, his body hated egg, peanut, and hazelnut-- plus we were avoiding almost all other tree nuts for good measure.  Today, we ate at a random donut shop for breakfast.

They tasted as good as they looked.

There was also this ridiculousness a few weeks ago.  Livin' the life.

Just wow.  He had a mint from Sonic last night.  No label, just a little wrapped peppermint.  Most of you wouldn't think twice about it, but Brendan could never have those before.  Without a label to read, we were unsure whether it was processed in a facility with nuts, so those little mints were always off limits.

It was teacher car hop night at Sonic last night.
Did we ask a single question about the food?!  Nope.  Not one.

There are a thousand little ways that Brendan's life has already changed because of OIT.  Did I mention that he's buying his lunch at school today?

In two weeks, he will have completed OIT, and he will have complete FREEDOM to eat whatever he wants!  He can walk into a restaurant and order ANYTHING off the menu, no questions asked.  He can head into a convenience store and buy whatever snack his little heart desires.  No more questions at church potlucks.

Yep, that's random food from a church swim party last week.
Oh, and two sweet boys, also!

No more bringing his own cupcake to birthday parties.  No more freaking out when a teacher uses food for a science experiment or class project.  We are so close.  Two more trips to Dallas to clinch Brendan's freedom.  We may be travel weary, but we are not worn down.  Bring. It. On.

The OIT Tango (Or Two Step if you're a country fan!)

We've had a jam-packed summer.  We flew into California and took an amazing road trip from there that included Yosemite, the Grand Canyon and Disneyland!

You should go to Yosemite if you've never been!  It's SO gorgeous!

Obligatory family picture at the Grand Canyon.
We got lots of attention with our Howdy shirts that day!

DISNEYLAND!!!
We met some friends for this leg of the trip and had a blast!

We all survived preteen church camp together (even the daddy, who was one of the camp nurses!), and we enjoyed some time in the Hill Country while Andrew attended a conference.

Canoeing at Preteen Camp!

A little hike in the Hill Country.

In the midst of all that, Brendan managed to get sick twice this summer, and to get carsick a couple of times on mountain roads in California.  In OIT land, that means that we either 1) can't updose or 2) have to down dose some, and THAT is what causes the OIT Tango!

Here's how our Tango went:  June 21st, Brendan updosed to 2 peanuts.  June 27th, he contracted a virus-- ran a low grade temp, vomited once, had a headache and slept all day.  If you get sick during OIT, you have to down dose, so back to one peanut we went until the virus cleared.  Since the "rules" are that you need to be on a dose for 7 days without symptoms before updosing, and we were leaving on vacation on July 5th, that meant we would stay at 2 peanuts for the entire vacation.  With our hopes of updosing to 3 peanuts before vacation dashed, we soldiered on.

And then we got to California.

This moment at In-N-Out burger complete with the "special sauce"
is brought to you by egg OIT.

We have a saying in this family, "It's not vacation until someone throws up," and our saying didn't let us down.  After just a few days on the twisty mountain roads in Yosemite, Brendan lost his cookies.

If you want to get to views like these, the roads are NO JOKE!!!

We spoke with Dr. Silvers and decided it was just carsickness, so we stayed at 2 peanuts.  A couple of days later, he threw up again-- this time after a train ride.

It was a fun train until he barfed!!

Since both cases of the vomiting occurred within 2 hours of Brendan having his dose, the PA and I decide to down dose him.  Back to 1 peanut we went!!  While we were on 1 peanut, little brother got sick and needed antibiotics-- this is an AWESOME trip, right?!!

The littlest one in this picture was running a fever.  
In the middle of Death Valley.  He has timing, right?!

We really did have fun, I promise.  After a week on 1 peanut, the PA gave us permission to go back to 2 on our own, so we upped the dose to 2 peanuts.  About 24 hours later, guess who came down with his little brother's sickness?!  Yep :(.  101 fever, vomiting, and a sore throat-- all on the day before his birthday at Legoland!!

This picture was taken just a few hours before we realized Brendan was sick.

So, we talked to Dr. Silvers again and went back to 1 peanut!!  Are you getting the vibe of our tango?!  After starting antibiotics, Brendan was feeling much better, so back to 2 peanuts we went, just a couple of days after getting home.  Unfortunately, all this back and forth caused us to cancel 2 updoses, so we've been trying to cram in an extra updose before school starts to offset the updoses we missed this summer.  Luckily, things have gone smoothly since getting back from California.

We moved to using peanut M&M's for dosing when we got to 2 peanuts, just before vacation .
3 peanut M&m's is equal to 2 "peanuts."  The peanuts in the M&M's are smaller than the average peanut.
Brendan likes to stick his hazelnuts into a Rolo :).

Brendan updosed right before preteen camp and did great with his doses at camp (in 100+ degree heat).  Then, he updosed right after camp, just before we headed to the Hill Country, and we've had two more updoses after that as the summer wound down.  Brendan is now at 6 peanuts and hazelnuts, twice a day!  We're skipping updosing this week because school is starting.  He only has 6 more appointments until he is DONE, 100% SET FREE from his food allergies!!  So, we're hoping we're done with the OIT Tango for now.  We'd much rather do the "Peanut Butter Jelly Time" dance!!

Anybody Want a PEANUT?!!

We've been truckin' along in OIT land, and I realized that I hadn't updated since we began multi-nut OIT in mid-march.  It's all gone so smoothly, there's been nary a need to update!  But here's how it's all gone down for those of you following our story:

We have faithfully updosed every week since mid-march.

At one of our updoses, Brendan's egg graduation picture finally made it to the wall of OIT graduates!
Our office actually had to start a new wall, because their old one was so full!

After about six weeks, we got to shed the solution and move on to capsules of peanut and hazelnut flour.

The entire first week of capsules, I felt like I was in "The Matrix."
Red pill or blue pill?!! We'll take BOTH!

Moving to capsules has some advantages, chief among them are no more nightmares that you may have left the solution on the counter all night.  Ask me how many nights I got up at 3am just to check!!  The capsules don't require refrigeration, so they are easier to transport and deal with in general.

The only con to the capsules, and this was a big con for us, since Brendan had already been down this road with egg OIT, is that you must mix the capsules into some sort of food (most people use pudding or yogurt) and our capsules contain a bit of baking soda to help the flour not stick to the capsule when you break it open.  Brendan HATES the baking soda taste, and he was already burned out on both pudding and yogurt for his "mix in" food.  We tried several things the first week or two of capsules.

These were seriously the only items in my cart one day at the grocery store.
I'm sure they thought I was nuts.  I guess I am!!!
Dosing methods in order of taste preference (number ONE being the best tasting):
1) Hershey's Syrup topped with whipped cream 2) Mint Chocolate Chip ice cream 3) Frosting (this was not a hit-- the texture was way too thick).  999) Blue Gatorade.  Seriously.  Don't try this.  It was YUCK.  He barely managed to choke it down.

We finally settled on a spoonful of Hershey's syrup with the flour on top, finished off with a squirt of whipped cream.  He used this method for dosing about 90% of the time we were on the capsules.

Whipped cream makes everything better.

By the final week on capsules, we were up to three spoonfuls, two hazelnut and one peanut!

Unfortunately, TSA doesn't like whipped cream-- or maybe they like it too much-- because they confiscated our bottle of Rediwhip in the Dallas airport!  OIT airport adventures are never boring!!

After 5 weeks on capsules, the big day arrived: ONE peanut and ONE hazelnut.  The real deal.

We just had to with this shirt.  #favoritemovieever

Here they are.  Weighed and ready for the entire week's worth of dosing!
It took me the entire jar to find peanuts the perfect size.  Next week, we will be using peanut pieces!!

Eating carbs right before his dose.

Moral support from little brother :).

More moral support from Memaw!

And here's the BIG MOMENT!!!

We were actually scheduled to see one of the PA's,
but when Dr. Silvers found out it was our ONE peanut day, he decided to do the visit instead :).

Brendan ate them like a champ!!  We're still only about half way done with the process.  They'll take Brendan all the way up to 12 peanuts/hazelnuts twice a day before he graduates.  Once he finishes, his maintenance dose will be 8 peanuts and 8 hazelnuts once a day.  I'll try to update again before he graduates, but just in case I don't get to it: Don't worry about us, we'll just be over here EATING PEANUTS!!

A Food Allergy Awareness Week PSA: Get an OIT Consult

I see the same comments made over and over again in the online allergy community, "My allergist doesn't think Oral Immunotherapy (OIT) is a good idea.  He says that our numbers are too high to even think about treatment."

My advice to them (after telling them their allergist is spreading LIES-- High numbers don't mean your child can't do OIT.): GET AN OIT CONSULT.

This post may be a borderline rant/vent, but it needs to be said:

You are not married to your allergist.  You are not cheating on him by visiting another board certified allergist.  You would not ask your GI doctor about surgery on your big toe.  Why are you asking your regular allergist about OIT?  Your regular allergist sees lots of types of allergy-- environmental and seasonal allergies probably make up the bulk of his "business."  While he may have a good understanding of food allergy, he only has a cursory understanding of OIT.  Only an allergist who is well-versed in OIT can explain the process accurately to you.

Likewise, a consult does not marry you to the idea of OIT.  It is just an appointment where you hear what the OIT doctor has to say.  Don't like it?!  Then don't do OIT.  But PLEASE, for the love, if you are at all interested in the idea of OIT; if you are sick of visiting your allergist once a year for an Epi refill and being sent on your miserable way; if you are OVER the exclusion, the bullying, the nightmare that is strict avoidance; if you are DONE with mystery hives on the playground, and reading labels, and speaking with chefs at restaurants; just go have a consult with an OIT allergist.

I promise, they won't feed your kid peanuts while you are not looking.  They will simply look at your test results, take a reaction history, and make a recommendation.

And here's what I'm going to tell you about your visit:  Visiting an OIT allergist will be like walking from a black and white world into a colored one.  Everyone in the office will be food allergy aware.  The doctor will have seen 10 kids just like yours that day.  The other people in the waiting room will be food allergy parents.  Instead of handing you an Epi script and sending you on your way, the doctor will spend time with you.  He will listen to every detail of your reaction history.  He will look carefully at your testing and order more if what you've had done was insufficient.

And then, here's the miracle of the whole thing:  He will come up with a PLAN.  That's right, he'll have a plan to tackle your food allergies.  That plan will probably involve food challenges-- to foods your old allergist wasn't willing to come near with a 10 foot pole.  That plan may involve getting your child's environmental allergies under control through allergy shots or SLIT.  It will also include a way to keep your child's asthma under control 100% of the time.  And yes, that plan may include OIT.
While every OIT plan is different for every child, they all have one common thread: HOPE.
You will leave the consult with HOPE.  When's the last time you left your allergist's office hopeful?  Yeah.  I thought so.

So PLEASE, just go have a consult with an OIT allergist.  After the consult, research, study, and decide what's best for your family.  That may not be OIT right now, but I'm willing to lay money that even if you don't choose OIT, you're not going to want to give up your OIT allergist.  OIT allergists are some of the most caring, knowledgeable, compassionate doctors I have ever met.  And they give us HOPE, a commodity that's hard to come by in the food allergy world.

Mr. Peanut, We're Coming For You!!

It's been about a year since we started our OIT journey.  There have been ups and downs, but Brendan successfully completed egg OIT and a round of tree nut food challenges.  That leaves us with two pesky food allergies: peanut and hazelnut.  On March 17, 2016 we began our journey to tackle those last two.  The timing was perfect, really.  The boys were on Spring Break, so we could spend a whole day in Dallas with nary a make up assignment to worry about.  We arrived in Dallas in the early afternoon on March 16th and checked into the hotel.  Memaw tagged along for the trip, and as always, she was a huge help!  We decided to let the boys have a little fun swim time when we got to the hotel.

Silly boys with their Memaw ;).

Swim Time!!

After a couple of hours swimming, we headed out to have dinner with my bestie (who happens to live in the Dallas area).  Her mom came to dinner, too, so Memaw got a chance to catch up with her.  Our kiddos had a blast together as always.

Time to say goodbye!  My best friend and I have been friends since we were 7,
so these boys are more like cousins than just friends.

After dinner, it was a quick bath and into bed.  We'd have to get up EARLY the next morning to ensure that Brendan had his egg dose at least two hours before we started OIT for peanut and hazelnut.  The next morning, we woke up bright and early, and I went to work making eggs in the hotel microwave.  This was our first traveling egg dose, and it seemed to work out pretty well, thanks to a little egg cooker I bought on Amazon!

How one makes eggs in a hotel room microwave.

Why, yes, that is a breakfast taco.  #Texasforever

After our in-room breakfast, we headed to the allergist's office.  March 17th happened to be St. Patrick's day.  We claimed it as our personal lucky day!!  Brendan completed a pulmonary function test (which he ROCKED this time-- unlike last year and our little asthma flare before he started egg).  Then, it was time for his doses!  We started with a single MICROgram of peanut protein.  The hazelnut dose was more flour, but about the same amount of protein.  Every 15 minutes, they brought Brendan 2 new syringes filled with a nut/koolaid solution.

The orange solution is hazelnut and the purple is peanut.
Brendan says the hazelnut tastes better than the peanut.

The boys chilling out in between doses.

Another dose in!  It must not taste the best, but he was a trooper!

After a full day of doses, Brendan went home on 5 milligrams of peanut flour (about 2 milligrams of peanut protein), and 15 milligrams of hazelnut flour (also about 2 milligrams of hazelnut protein).  He took that twice a day for just over a week, and then went back to updose on Good Friday (yay for another school holiday!).

Back in the office for an updose.

A week and a half later, he went back and updosed again.  He's been on 15 millgrams of peanut flour and 45 milligrams of hazelnut flour (about 6 milligrams of protein for each nut) for nearly a week.  By comparison, a single peanut contains between 250 and 300 milligrams of protein, so Brendan is eating about 1/50 of a peanut at this point.  We head back to Dallas again tomorrow for another updose!!

This round of OIT has gone fairly smoothly so far.  Brendan has had two episodes of vomiting, but both seem unrelated to his dose (once was from car sickness and the other was the day before his big state assessment, so we're chalking that one up to nerves).  As a second round OIT mom, I find I'm much more relaxed than during our first round.  I liken it to having your second kid.  You are a complete ball of nerves with your first kid, but when the second one comes along, you're much more chill!!  It is hard to believe that peanut and hazelnut are Brendan's last two allergies.  Sometime this fall, as long as all goes well, Brendan will be able to eat WHATEVER he wants from ANYWHERE he wants.  It is so close, we can almost taste the Reese's Peanut Butter Cups and Nutella!!!

Egg-citing and Nutty News!!

Well, here we are.  Brendan has been in maintenance for Egg OIT for about two and a half months.  After two more incidences of vomiting his egg white powder dose in December, the doctor and I decided that Brendan had developed an aversion to egg white powder (One of these times, Brendan gagged on the first spoonful of his dose!).  You know that thing you ate when you were 5 years old and it made you throw up, and now you can't even stand the thought of it?!  Like that.

It's strawberry yogurt bars for me.  After an incident as a preschooler,
I can not even think about eating anything like these babies ever again!!
So, I totally get how Brendan feels about egg white powder.

So, we decided to change his maintenance dose from a tablespoon of egg white powder to a single scrambled egg each morning.  Brendan has done BEAUTIFULLY on this new plan.  He happily eats his egg.  Sometimes it's got ham and cheese in it.  Sometimes it's in a breakfast taco.  Sometimes it's on a sausage biscuit.  Variety is the spice of dosing!  His brother always eats an egg with him, too, and usually I have one also (Daddy has one, too, on the weekends), so dosing is now a family affair!  It's been over a month since we've had any kind of vomiting at the Larson house.  Boy does it feel good to say that!!  Brendan has also tried a few new egg containing products like mayo and cheesecake, and of course, we keep plenty of baked goods in his diet.

Chocolate Cheesecake, Anyone?!

His first Molten Lava Cake from Chili's.

His first cupcake from our local cupcake place!

With egg going so well, we've turned our attention to kicking some tree nuts in the rear end.  So far, Brendan has challenged and passed: pecan, almond, macadamia nut, cashew, pistachio, and walnut.  He tests positive to all of those nuts except cashew.  A few years ago, he passed pecan, almond, and macadamia, but I hadn't kept them in his diet regularly.  Dr. Silvers allowed us to carefully reintroduce those at home.  Cashew was also introduced at home because he tested negative to it.  We had to challenge pistachio and walnut in our local allergist's office.  The most "challenging" part of those two challenges was pulling Brendan off antihistamines in preparation for the challenge.  We thought we'd never survive, and we actually had to reschedule once because he developed dermographism (hives wherever your skin touches something) while he was off of Zyrtec.  Our local allergist relaxed the "rules" a bit for us, and allowed us to give him Benadryl up to 24 hours before the challenges once we rescheduled.  This plan worked much better, although Brendan was still a bit rashy and itchy by the time the challenges rolled around.  Luckily, he passed both challenges and took a Zyrtec before we even left the office after the second challenge!  All we have left introduce are Brazil nut and pine nut at home, and we don't have to remove antihistamines for home challenges.  Can I hear an A to the MEN?!!

Six hours in the allergist's office over two days, challenging two different nuts,
and this is the only picture I can manage to take.  Sorry, guys!!

You've probably noticed one major tree nut missing from the list above: hazelnut.  Oh Nutella, why must you be so delicious?!  Brendan's hazelnut IgE is currently at 51.3.  That number almost certainly indicates a hazelnut allergy, even though he's never actually eaten them.  The other nut we still have to "crack" (I just couldn't resist the pun) is peanut.  His peanut IgE rests at 97.4, also indicating an almost certain reaction to peanuts.  Brendan has never eaten peanuts, either.  He did kneel on a small smear of peanut butter on a carpet when he was two.  He got hives on his knee where the peanut butter touched his skin.  So, although Brendan has never eaten these two nuts, we have been assured by several allergists that he is, in fact, allergic.  Given his history of anaphylaxis to wheat and egg, I'm assuming a run-in with peanuts or hazelnuts won't go well.

So, then there were TWO.  Peanut and Hazelnut.  Luckily, our awesome OIT allergist does multi-nut OIT.  Brendan will be able to do up to 5 nuts and seeds at once for his next round of OIT. So, peanut and hazelnut:  you've been put on notice.  We're coming for you.  We have day one for multi-nut OIT scheduled for March 17th.  BRING. IT. ON.  We will be FREE from these stinkin' food allergies!!!

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.