Day Dreaming

Living with a LTFA (life threatening food allergy) is kind of hard to describe.  Our life is normal, but not.  We monitor all food, read labels, call manufacturers, visit many doctors, skip most restaurants, bring food with us, carry epinephrine, never fly, spend scads of money to have safe treats shipped, rent houses instead of hotels (we need the kitchen), and have been known to put the house on lock-down and watch Sydney like a hawk if she coughs a bit too much or looks a little red in the face.

Most of the time we take it in stride.  Sometimes I will see family and friends post pictures on Facebook of food porn from restaurants they are visiting or outings to ice cream shops and, I admit, feel an overwhelming sense of loss for what Sydney has never been able to experience.  Now, if you are one of said family or friends who do this, please don't stop!  Because of OIT your pictures are now providing inspiration and give us something to look forward to!  That's one of my favorite past times lately - dreaming of what life will be like for Sydney once we're done.  Hey, I need something to get me through those 9 hour car rides!

During a recent visit to Dr. Nash we discussed what "graduation" will look like for Sydney.  I was under the mistaken impression that she needed to eat 24 peanuts.  Plain roasted peanuts.  Dr. Nash let her know that she could bring in any kind of peanut food she wants.  She will keep eating until she reacts or she doesn't want more (sort of).  She's still got to eat at least the 24 peanuts.  So we instantly started dreaming about what she would bring for the appointment.  Snickers, Pay Day, peanut M&M's, Reese's, a jar of peanut butter.  It's overwhelming to think about and, being the mom that I am, I started tearing up at just the discussion.  Fortunately, I waited until Dr. Nash had left the room so that he only suspects I am a raving lunatic and has no proof.

There is some disagreement, but generally there are about 27 peanuts in a Snickers.

When we started this OIT journey, I asked Sydney what she was most looking forward to.  "Oreos."  I tried to explain that no, she could have anything, go anywhere, eat at any restaurant.  Melting Pot?  A trip to Europe (hey, I can dream too!)?  Nope.  "Oreos."  After our conversation with Dr. Nash though, she started getting into the spirit of my question.  Dream, my girl.  And dream BIG.

Pocky was high on her list along with the Oreos.  These are cookie sticks dipped in chocolate.  Many of her friends rave about them and, with a cross-contamination warning on the box, they have been off-limits.

Sydney has never been able to get anything from a bakery.  I've always made her birthday cakes.  I don't stink at it, but I remember the sadness I felt (when she was 3 years old because, yeah, I'm all kinds of OCD and worry about things 30 years in advance) when I realized that I would have to make her wedding cake.  It hit me the other day that once she graduates OIT that won't be the case.  I mentioned it to her and told her she can get a cake from ANYWHERE once she is done with OIT.  We used to like watching cake decorating shows on Food Network (Ace of Cakes comes to mind) and I expected her to say one of those locations.  Nope.  Without hesitating, she asked for Sidney.  Sidney Galpern is a friend of ours who discovered her life's work at a very young age.  She owns Simi Cakes & Confections and travels internationally teaching classes, sells her own line of cake decorating accessories, has provided cakes for Extreme Home Makeover, and has her own YouTube channel.

I've also, finally, talked her into a trip.  Alas, not Europe, but she decided that once she graduates she would like to go to New York City.  FLY to New York City, of course.  A week full of Broadway shows, site seeing, and NYC restaurants.  I cannot even imagine.

Life is a Highway

One of the biggest challenges of Sydney’s OIT journey has been the actual journey.  She and I travel 9 hours each way, twice a month, from Florida to North Carolina to see Dr. Nash.  The first question I always get is, “Are you crazy?!”  The second one is, “Isn’t there a doctor in Florida that does this?”  The answer to both is, quite emphatically, “Yes!”

Choosing to be treated by a doctor so far from home was not an easy decision.  There is one doctor in Florida who has experience with milk OIT but, at the time we wanted to start, no peanut experience.  Call me crazy, but I wanted to stick with the doctor with the most experience and the most scientific, conservative protocol.  Dr. Nash provides and weighs all doses of peanut flour and sends me home with precise amounts.  Some protocols mix a small jug with Kool-Aid and flour, telling the parent to shake well and pour out a measured amount.  Other protocols involve eating peanut M&M’s in increasing amounts.  I know many moms who handle these systems just fine, but I just didn’t feel confident in myself to be precise all the time.

So, that’s the long answer as to why we load up and hit the highway so often.  The drives are pretty simple – literally a straight shot up I-95 nearly the whole way.  We have our routines already established.  The same exits up and back in GA and SC.  Thank god for Starbucks along the highway too!  They've saved me more than once.  

Our favorite exit in GA - Starbucks and Krispy Kreme in one building!  

Between the caffeine and the sugar, we won't fall asleep for days.

Fortunately, we both have similar car trip styles (i.e. music, rest stops, food, etc.).  Unfortunately, the ride has proven to cause a delayed stress explosion for Sydney.  The entire ride is fine.  But, more than once, she has let off steam upon hotel arrival with a burst of crying, yelling, or just plain meanness.  No, it’s not being a teenager.  This is totally out of character.  (She is really an incredible and kind person.)  So, we are trying to come up with a few relaxation and calming rituals for her upon arrival.  So far nothing has worked, but we are open to suggestion.

One way we stay sane on these endless road trips is to convince friends to travel with us.  Sydney has some wonderful friends and a pretty awesome boyfriend.  Twice we’ve been lucky enough to have company for the ride.  I’m not sure these poor kids know what they’re getting themselves in to when they decide to come, though.  “It’ll be FUN!  Piece of cake!  9 hours goes by SO fast!”  (At this point, I don’t think they’d believe me if I told them the sky is blue.)

Visit to the mall and PF Chang's with a friend.  

Sydney wore a Lolita fashion dress she created.

It's de rigueur to stop at South of the Border.  

If nothing else than to marvel at the ghost town.

During Nut Watch 2013 in December we learned that our 10 year old, beloved Honda Odyssey was definitely a Florida girl.  She did NOT like the cold weather and protested repeatedly (cruise control wouldn’t work until we hit GA again, doors slid open reluctantly, ice formed on the inside of the windshield, the radio refused to squawk – not cool with a teen in the car!).  I knew we would have to replace her before next winter, but she had other ideas.  In late April and early May she literally started falling apart.  The timeline had to be accelerated (much to my husband’s dismay) and on Mother’s Day, Scarlett was born.  Scarlett has a complex personality and we are still learning how she operates.  It’s become a joke that every week I still find something new.  I’m thankful to have such a safe, reliable, and comfortable ride for the next two years for our insane amount of traveling!  

Meet Scarlett.
She's already carried us 8,686 miles in just 78 days.  

Vampires, Pudding, and the Personal Poison

We’ve settled into a daily routine with OIT.  It’s hard to believe that feeding my kid her personal poison every morning has become routine.  The protocol we are on is best described a “low and slow.”  So even though she is 4 months into it, we’re just snuggling in and getting comfortable for the long haul. 

Her protocol requires that she has her PP (Peanut Protein or Personal Poison – you decide) each day within 2 hours of when she had it the day before.  Don’t worry, it’s not as convoluted as it sounds.  Basically if she has it at 8am on Tuesday, she can have it at any time between 6am and 10am on Wednesday (2 hours before or 2 hours after).  It is great to have this flexibility.  We’re able to move dosing around with relative ease based on activities for the day or week.  Which is a good thing because I’ve recently discovered that teenagers are part vampire.  Seriously.  (Maybe that’s why many of them like vampire books.)  They sleep all day and are up all night.  Sun streaming in the bedroom window can send them into paroxysms of pain.  Fortunately, in lieu of blood for sustenance they manage quite happily on an endless supply of pizza.

After she doses, she can’t raise her heart rate for 2 hours.  She also can’t go anywhere.  This has been a point of contention because she wants to just GO.  The possibility of a major reaction in the car while driving down I-95 at 70mph (or thereabouts) just doesn’t seem to be a deterrent.  Teenagers are amazing. 

The actual dosing of her peanut flour is done by mixing it into a medium of her choice (approved by Dr. Nash).  Generally, they use applesauce in the office for updoses.  She liked that at first, but the more the peanut flour the more it messes with the taste.  (Sydney had me try the peanut flour with old, extra doses.  We were curious how ‘peanutty’ it tasted.  I took the 100mg like a shot without mix-ins.  It’s pretty darn strong!)  We’ve now moved on to pudding.  Dr. Nash has suggested ice cream, which drew a lot of enthusiasm from the peanut gallery.

We are 4 months into this protocol and are looking at another 7 to 8 months of updosing every other week.  After that we get to visit Dr. Nash just once a month.  I know that Sydney and I will both be overjoyed when that happens.  I think that the biggest challenge for us on this journey has been, well, the journey…

Knock on Wood, Cross Your Fingers, and Throw that Salt!

So, a friend recently asked if I’d given up on this blog.  Apologies to all.  I haven’t given up.  I was trying not to jinx us.  However, I realized that the intent of the blog was to help others benefit from our journey.  So, I’m back.

I was worried about jinxing us because it has been going So. Unbelievably. Well.  Sydney has already updosed all the way to 100mg, which is about 1/3 of a peanut.  She’s had a few bumps in the road, but we’ve been very fortunate.

100mg of peanut flour.  This crap is getting real!

Shortly after my last post she had a reaction during her daily home dose (hence the “jinx” worry).  She took her dose, failed to eat breakfast, and within an hour felt nauseous and ended up vomiting.  Fortunately, she had no other symptoms and Dr. Nash said the dose was in her long enough that he felt comfortable she got enough of the peanut protein and we didn’t need to make the 9 hour drive back to him in order to down dose.  (Bless you, kind sir.)

The only other major issue was a week or two ago.  She again failed to eat breakfast* and again around the hour mark felt nauseous.  She didn’t throw up this time, but did have a bit of wheezing that was quickly resolved with just 2 puffs of Ventolin. 

For the most part, her daily doses have been uneventful.  She will have some excess saliva that goes away with a drink of water, and occasionally a bit of stomach discomfort.  You may read this wondering exactly what Kool-Aid I’ve drunk to think that this is all just rainbows and sunshine.  But, remember, OIT is the slow re-teaching of an immune system to tolerate an allergen.  As much as we would have liked all straight A’s during this “re-teaching,” we will accept the occasional B or C as long as the end result is a passing grade.

So, for now, knock on wood, cross your fingers, and throw some salt over your shoulder.

*Dr. Nash does not believe eating or not eating food around dose time affects the likelihood of a reaction.  He, of course, bases this on his experience in study and private practice, as well as other published studies.  All I know is that the only 2 times she’s had a reaction, she hasn’t eaten breakfast.  Whether it’s a sugar pill or not breakfast is now a requirement.

Sydney ate peanuts!

I'm not one to believe in fate, and certainly not divine intervention, but I wavered a bit in my skepticism this February.  The last time you visited this Bat Channel, I told you that Sydney was scheduled to go see Dr. Nash and get started on her peanut OIT in mid-February.  2 days before we were due to begin the trek north, Sydney got sick (I'm going to call it "sick" and not "teenager-stayed-up-too-late-too-many-times-and-let-herself-get-rundown").  OIT can't happen when you're sick. Gah!  But... Unless you've been living in a cave, you know that the weather north of Miami this year has been a tad...brisk.  For North Carolina, the worst of it was, yep, you guessed it.  Mid-February.  

This picture was taken within miles of our destination the day we were supposed to be there.  

Divine intervention, or not?  You decide.

Fast forward 2 months and her rescheduled OIT initial escalation day has arrived!  We drove up on a Monday, along with every single snowbird fleeing Florida as the summer heat arrives (and the north begins to thaw).  Sydney has been getting quarters every time I "gently speak instructions on how to improve driving skills" to my fellow travelers.  At the end of the day, she was $347.50 richer.  

We arrived at Dr. Nash's office at the crack of dawn (especially from the perspective of a homeschooled night-owl teen).  He had asked us to arrive early in order to get us started before the office got busy.  I was proud of Sydney for pulling it together and rolling out of bed at 7:30, especially after all that travel and a late night online with friends.  I was less thrilled when she told Dr. Nash her April Fool's joke (because, yes, the appt. was April 1st) was going to be to fake her own death.

Sylvia, Dr. Nash's RN, was out for the day.  This meant that Dr. Nash administered all the doses himself which I don't think is typical.  It gave me a chance to ask him every 15 minutes, "So, she's OK right!?!?!?!?!? RIGHT!?!?!?!?!?"

Sydney took her first dose at 8:30 that morning.  And by "dose" you know I mean peanut flour, right?  Just sit back and let that sink in for a second......

Sydney    ATE    peanut!

Yeah.  Uh-huh.  No biggie.  I was as coooool as a cucumber.  Ahem.


That first dose was .1mg of peanut flour.  That one I remember.  The rest became a blur. She ate that poisoned applesauce like nobody's business and DIDN'T DIE!  WooHoo!  Then 15 minutes later, the devil/saint came back in the room with another DOUBLE sized dose.  Yep. She had to down poisoned applesauce at least 6 times that day and build up to 3mg in order to undergo OIT.  

Sydney experienced no symptoms or reactions with the first or second dose and I was feeling rather cocky.  Then, after she took the 3rd dose, she got a stomach ache that just wouldn't go away.  Damn peanuts!  

Dr. Nash delayed more dosing to assess what would happen.  He wasn't concerned and though he said all kids are different, this really wasn't anything out of the ordinary.  Deep breaths....

After an hour, he and Sydney discussed how she felt and she said she was ready to go for the 4th dose.  I was so proud of her.  I suspect that must have been one of the hardest decisions she's ever made.  The fear of the unknown can be crushing.  But she pushed through and soldiered on.  She is truly my hero.

The 4th dose caused a few more stomach pains but it never got alarming and symptoms like swelling, throat scratchiness, and hives never manifested.  By 11am my girl had DONE IT!  She powered through those 6 doses and reached the all important 3mg dose.  She decided to stop there because of her stomach and I support that decision 1000%.  After waiting 2 hours for observation, Sydney was allowed to leave.  Her stomach pains completely cleared by the afternoon.

The next morning we returned to Dr. Nash for Sydney to take her first daily dose.  All she had to do was take one dose of the 3mg she ended on yesterday.  I don't think I've ever felt such a HUGE sense of relief as I did when her 2 hours were over that morning and she'd had NO reactions at all!  The day was made even brighter because Sylvia was at work today and helped take care of Sydney.

Sylvia giving Sydney her 3mg dose on the 2nd OIT day.

After her time was up, we were headed home.  Funny thing about this OIT thing though.  You have to actually eat peanut every day.  That meant I had to bring peanut flour doses home with me.  In my car.  In my house.  I started to twitch when Sylvia handed me the bag of little dose cups.  But if Sydney can be brave enough to actually EAT the stuff, I decided I needed to get over myself and deal.  

(It took 2 1/2 days after we got home, but I'm almost OK with it being on my counter now.  Almost.)

Our drive back to Florida was uneventful and less profitable for Sydney.  The snowbirds weren't headed south and she only made $9.25.  We both felt good about the drive and the time it took.  I'd been worrying that two back-to-back 9 hour drives would be the death of us.  With the exception of missing out on a few teen events back home that caused acute and piercing pain, we survived.

And so that's it.  The story ends.  

Hahaha.  I wish it could be so easy!  No, now came the hard part.  (Because, you know, the last 2 days were a piece of cake!)  Now my job is to give Sydney daily doses of poisoned applesauce without Dr. Nash being within 20 feet to hold my hand.  But I put on my big girl panties, Sydney rolled her eyes at my dramatics, and she sucked down that first at-home dose the next morning like it was manna from heaven, sort of.  And you know what happened?!  Ab-sol-ute-ly nothing.  

3mg of peanut flour

4 days later and her morning doses are still utterly boring.  Boring is good!

And Away We Go!

Sydney has been on the wait list with Dr. Nash since she decided to do OIT in September.  Part of me wants to hurry UP and get started, but another part is happy to have the extra time.  She is going to have a lot on her plate, and a lot to adjust to, for the next 2 years.  Taking a few months for “the call” seemed more blessing than curse.

Of course, excitement took over when Sandra (receptionist) called this week to schedule Sydney’s OIT initial escalation day.  IT’S FINALLY HERE!  Mid-February we are going to drive up for a 3 day stay to get this party started.  Tom is coming with us this time, which I am thankful for; though Sydney warned him that he will be bored out of his mind.  Remember – bored is GOOD!  I like the way she thinks!

The first day of OIT is going to be the longest.  Nothing this kid can’t handle though, as it’s going to closely resemble the SEVEN days of food challenges she already has under her belt.  The first day she will arrive by 9am and start off with .1mg of peanut flour.  Do you have any idea how small that is?  Well, you know I love Google!  .1mg is equivalent to about 0.000003527 ounces.  I can’t even fathom how small that is.  I think I’m pretty close when I tell people “the size of a speck of dust.”

After that is tolerated for about 20 minutes, she gets another dose.  This one is bigger.  Watch out!  It’s a whole .2mg!  The idea is to slowly increase this microscopic dose to make sure she can handle the whopper that comes at the end of the day, her 6^th dose….  3 whole mg.  For those playing along at home, that’s a massive 0.000035 oz.  If she can hit this amount (and Dr. Nash has never had a patient not meet it) she gets to go home for the day.  Actually, she gets to go back to the hotel for the day.  Because tomorrow we’re comin’ back!!

The 2^nd day of this initial escalation appointment will go a lot faster.  Basically, Dr. Nash will give her the 3mg dose again when she arrives.  She waits for 2 hours to make sure she has no reaction and then she gets to go home.  And YES we are driving home after that!

There are 22 dose increases that she will have over the first year.  I’ve listed them below for the insanely curious.  They will be spaced 2 weeks apart.  As long as she doesn’t get sick (where we would have to dose-down) or have bad reactions to a certain level, she could hit maintenance by December 1^st.  I assure you, that is being exceedingly optimistic.  But that’s my job.  Just call me Ms. Glass is Half Full.

Dosing Schedule

3mgs

6mgs

12mgs

25mgs

50 mgs

75mgs

100 mgs

125 mgs

150 mgs

175 mgs

200 mgs

250 mgs

300 mgs  (about one whole peanut!!!)

400 mgs

500 mgs

600 mgs

900 mgs   (three peanuts!)

1200 mgs

1500 mgs

1800 mgs

2100 mgs

2400 mgs  (I’m going to faint – 8 peanuts!)

The entire second year consists of daily doses of 2400mgs.  At the end of the second year, Dr. Nash will do a peanut food challenge (just like Sydney did for other nuts in December 2013).  If she can successfully eat 24 peanuts, she passes.  And her life will never be the same again.

Nut Watch 2013

Sydney and I traveled to Raleigh for her food challenges the week after Thanksgiving.  We spent 11 days testing 7 foods.  I cannot adequately convey what a surreal experience it was to watch your child eat NUTS when we have spent a lifetime avoiding them on fear of death.

Tuesday Dec. 3^rd was her first appt. She received minute amounts of powdered shellfish mixed in applesauce every 15 minutes.   (Seconds after her first dose she sneezed and nearly sent me, and the nurse, into cardiac arrest!)  They slowly increased the amounts as the morning progressed.  By noon there had been no reaction at all and they ordered takeout.  NO KIDDING!  I was hysterical!  For lunch she ate crab wontons and ginger shrimp with oyster sauce from Pei Wei. She loved the crab Rangoon and detested the texture of the shrimp. She only ate 3 because she thought they were "gross."  She didn't have one teeny bit of a reaction all day.  She successfully PASSED the shellfish challenge.

Lunch from Pei Wei has arrived!

Wednesday the 4^th was Brazil nuts. My mother-in-law has issues with Brazil nuts, so I was on edge from the get-go.  This was the first time since that fateful day in 2002 that a nut has crossed those lips.  I was starting to get flashbacks.  The day started out the same way...trace amounts. Each dose is mixed in applesauce until she gets to the actual nut. She eats those plain.  Around 11 am she had about 1/4 of a Brazil nut. That went well so around noon he gave her at least 2 or 3 of them. She had them with no problem.  Actually, I should say with no reaction. She DID have a problem with them. She hated them!  She said they tasted like a cross between dried pasta and grass. Eww.  She successfully PASSED the Brazil nut challenge.

These were the first nuts that crossed those lips in 12 years.  I was QUAKING!

Thursday the 5^th was Pistachios. No issues at all the whole day.  In fact, she LOVED them!  Dr. Nash gave her a huge amount for her dose and then she asked for more (which she got)!  In all, she consumed nearly a cup of pistachios. No reactions or anything. He was able to give me the brand of pistachios he uses.  He has already vetted them for cross contamination to peanuts and other nuts. And they are even available at CVS and Walgreens!  She successfully PASSED the pistachio challenge.

 Do you KNOW how annoying pictures by Mom are?!

The first half of the pistachio picnic Sydney enjoyed.

The following Monday (the 9^th) we returned and faced down Walnuts.  Again with the tiny doses of flour building up to that colossal serving of whole nuts.  Walnuts were greeted with much more enthusiasm by her taste buds.  It was today that I learned Sylvia, Dr. Nash’s RN, was hand cracking all of these nuts.  They had to get nuts in the shell so that there was no possibility of cross contamination with peanuts or hazelnuts.  The poor woman was going to get carpal tunnel by the time we left.  There are 3 more days!  Walnuts: PASSED!

Walnuts!

Tuesday the 10^th brought us Pecans.  It was starting to get creepy how BORING these food challenges were.  (Boring is GOOD, I assure you.)  I tried to balance my gratitude and dread with equal measure.  Pecans didn’t make her flinch and discussions of chocolate pecan pie kept us all entertained (and salivating) that afternoon.  She successfully PASSED pecans!

By the 5th day, Sydney was pretty much done with pictures.

Wednesday the 11^th introduced Almonds.  Now, I wasn’t broadcasting it, but I woke up that morning with my stomach in my throat.  This was the nut that had a “blip” on the blood test results.  If a reaction was going to happen, it would more than likely be today.  How do you shower, dress, eat breakfast and walk out the door with your daughter wondering if today was going to send her to the hospital?  Let me tell you – it’s not easy!  We had a deal all week that I would only ask her “How are you doing?” once per dose.  Getting asked 3,276 times in the 15 minutes between doses had worn on her real quick and she instituted that rule early on.  Today is was sooooo hard to honor that.  I may have asked a few extra (hundred) times.  Fortunately, my worry was for nothing.  Almonds proved no more difficult than any other food she’d had that week.  They have turned out to be her favorite nut and since we’ve been home she often grabs handfuls of them for a snack.  Almonds: PASSED!

She spent 7 days, 6 hours a day just like this.  I think she deserves a prize for not going stir crazy!

Thursday the 12^th was our last day.  Cashews were last on the menu and the day proved to be our quickest.  Cashews are not sold in the shell.*  Dr. Nash had to make up doses with pharmaceutical cashew flour.  Badda Bing, Badda BOOM!  WE ARE DONE!  Cashews are passed and we’re going home!

I do believe those 11 days in Raleigh were the longest in Sydney’s life and the longest in mine.  Every day I am awed by the bravery my girl possesses.  But those 11 days were like nothing I’d ever seen before.  Grace, wit, self-possession.  I want to be just like her when I grow up.

(Thanks to my cousin for naming our adventure.  We had 100 people on Facebook watching for updates throughout the day to see how Sydney was faring.  Without their support, she and I would more than likely have lost it.)

*Facts you learn in this business of food allergy mom: non cross contaminated cashews in the shell are not available. Why is that? Have YOU ever seen a cashew in the shell? No, you have not. I know this because I am the research queen.   Apparently cashews are in the same family as poison ivy and poison sumac. Shelling them is a, shall we say, less than pleasant experience and roasting them is the only way to kill off all the residual toxic oil.