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.

Why we do what we do...

Over the years, we have taken Sydney to nearly every allergist in our area.  We don't live in a small town, but allergists are few and far from adequate.  

Her original allergist was interested in pumping her full of preventative meds for asthma which only showed up (mildly) while she was sick.  He was also fond of walking out of the room while I was still asking questions and leaving us trapped in an exam room to watch a dryyyyyy video on allergies containing everything I had already researched.  Did I mention she was 1?  Not a good idea to trap us in an exam room for 60 minutes.

The next doctor had the bedside manner of a block of wood.  He did NOT want to hear from you, nor your questions.  Arrogance is a very nice word for him.  We left when he refused to even come into the exam room, and his nurse put peanut on Sydney's back during a scratch test.  &%$#!!!!!!

Her most recent doctor is a mix of good and bad.  He takes the time to talk to her, answer questions, etc. But he is also fond of throwing meds at a problem and not caring to determine the root cause.  Why would you want to avoid a food if you can just use this steroid cream for the eczema?  

For the last 12 years we have operated under the assumption that Sydney's allergies may (and probably do) extend beyond just peanut.  After her reaction in February of 2002, she never had a tree nut or any shellfish.  Ever.  Blood testing had been done haphazardly over the years, with none of the allergists wanting or even caring to find the truth.  In fact, the arrogant doctor had an arrogant nurse who told me It's your choice not to keep walnuts in the house.  Just sit her down at the table and feed her one.  See what happens.  

In swoops Dr. Nash.  Sydney and I traveled to Raleigh to have our initial consultation with Dr. Nash regarding oral immunotherapy.  During our visit, I asked about determining the true extent of her allergies.  Where I had to beg, plead, wheedle, and whine with earlier doctors, I was met with Of course.  Here is a bloodwork order for over 20 allergens.  I admit it.  I teared up a little lot.

The bloodwork came back with some encouraging results.  It appeared that she may not be allergic to anything else.  Except hazelnuts.  Her dreams of feasting on Nutella were dashed!

Of course, with food allergies you can never be 100% certain you're in the clear unless you safely consume the food.  To do that, you have to undergo a food challenge.  Dr. Nash was immediately on board.  Finally.  FINALLY we were going to know exactly what we were dealing with.

Sydney and I traveled to Raleigh in December 2013 for 11 days in order for her to get challenged on 7 different foods.  (You can read about that adventure in Nut Watch 2013.)  For now, it serves to partially explain why she and I are willing to drive 1200 miles round trip to see Dr. Nash.  We finally found the doctor willing to do his damn job.  We finally found the doctor who, we hope, will eventually change her life forever.

What the heck are we doing here?!

There has been a lot of research over the years into food allergies.  Why have they exponentially increased?  What is causing them?  Can we create a vaccine?  A cure?  I've followed the studies avidly. Just another 3 or 4 more years and "they" will have something.  Maybe by the time she is 8. Or 10. Or 15. Or never.  There's a lot of politics and money tied up in research. If a treatment ever becomes approved for the masses, I'm not sure it will be in my lifetime.

So exactly what the heck are we doing?!

Oral immunotherapy (OIT) is a treatment where nearly microscopic amounts of an allergen (peanut flour) is ingested in increasing doses over time.  Like allergy shots, the idea is to desensitize a person by building up a tolerance.  Sounds risky, eh?  Well, it definitely has an element of risk.  But so does living in a peanut obsessed world.

OIT is still being researched and has not been approved by the FDA for treatment of food allergy.  Based on my research, there are a few reasons for this:

1.  There is a desire to mass produce a specific protocol that can successfully be used on everyone.  You have a peanut allergy?  Ok, we're going to do X, Y, Z and viola! no more allergy.  The problem with this is that allergies are individual.  Protocols needs to be developed to suit the individual patient.  But individualism can't be mass marketed.

2.  There is concern over how long the effects of OIT will last if the allergen is not regularly consumed. Based on published papers, doctors are unwilling to release this treatment unless they can say that a patient must undergo therapy for 6 months, or 2 years, or 5 years AND THEN NEVER HAVE TO EAT ANOTHER PEANUT.  For some reason they are really stuck on ending daily dosing and maintaining desensitization. It's already been proven that desensitization is maintained if a daily maintenance dose is taken.

3.  Studies are run by doctors and scientists in large universities funded by even larger mega-billion dollar pharmaceutical companies.  How much money is there in peanut flour and daily peanuts?  Just sayin'.

Fortunately, I stumbled upon a Facebook group where Mom's, Dad's, and the allergic community were getting together to discuss an incredible discovery!  There ARE doctors offering this treatment RIGHT NOW!

We were fortunate to find Dr. Scott Nash in Raleigh, NC. He originally worked on the Duke University study for years before leaving and opening up his private practice.  His protocol is excruciatingly long (1 year of updosing followed by 1 year of maintenance dosing before being "challenged" and graduating). But we felt it was safest simply because it IS so long.  Each updose is spaced 2 weeks apart and the increases are small each time.  Going slow and being conservative should help reduce the risk and severity of reactions.  We have lived with this allergy for 12 years. Taking 2 years to safely get rid of this &$%! allergy will be walk in the park.


Want to learn more?

http://www.oitcenter.com

http://www.webmd.com/allergies/news/20070226/progress-against-peanut-allergies

http://www.medscape.com/viewarticle/818558

http://www.dukehealth.org/health_library/news/studies_show_children_can_complete_treatment_for_peanut_allergies_and_achieve_long_term_tolerance

http://wondergressive.com/peanut-allergy-rise-cure-horizon/

http://www.ncbi.nlm.nih.gov/pubmed/23062391/

http://www.ncbi.nlm.nih.gov/pubmed?term=Allergologia+et+Immunopathologia.+12%284%29%3A275-81%2C+1984+Jul-Aug

Welcome to Our Nutty Life!

Thanks for joining us on this journey/adventure/crazedmaniacalrollercoaster ride!  You will be meeting the cast of characters as we go along.  The main one you should know is Sydney.  She is the most phenomenal young woman you ever want to meet.  Creative, empathetic, kind, intelligent, beautiful, and, above all, BRAVE.  

This is Sydney just 3 days before Peanut Day.

This is the brave lady today.

Check out Where it all began and where we're going to learn about her story.