Oral Immunotherapy or OIT

1. Oral immunotherapy is a method of inducing your immune system to tolerate a food that it is currently over-reacting to. It involves re-introducing the allergenic food to your system in gradually increasing amounts, with the goal of allowing you to eventually consume the food without experiencing a reaction.

I need to start by saying in no uncertain terms should you do this on your own, without the strict  supervision of a Board Certified Allergist. 

When our allergist first broached me with the idea of OIT as a solution for my daughters very severe, life threatening food allergy 5 years ago, I was totally on board.  Unfortunately for me, my then 4 year old and my Husband we're totally not on board, they were so far from on board they weren't even near the station.   I was frustrated and fearful as she was just about to start school and OIT seemed the obvious choice.  We had done a good job of avoidance since her first reaction at just over a year old.  She had, had only one other reaction.  A contact reaction that went into full anaphylaxis when another preschooler kissed her and had peanut butter on her face.   So convincing them that eating peanuts was the right choice, wasn't happening.

It wasn't until a very scary reaction and hospitalization, when she was seven, that both my Husband and daughter started to consider OIT as an option.  It took almost two more years, until they both were fully on board and we finally started desensitization with our allergist, Dr. J. Baker.   We started on July 1, 2013, full of nerves and anxiety we climbed the stairs to Dr. B's practice...I was terrified and fighting the urge to cry and run screaming from the building.  Was I really going to allow our very trusted allergist to feed my child the one thing that could kill her?! 

Turns out, I was willing to.  That day was bright and sunny; hot really.  We had bags of stuff; a laptop, ipad, books, coloring books, DSi (that I bought to bribe her to be on board), snacks, drinks, lunches, gifts (in case I needed to do more bribing) and lots of sets of epi pens (you don't need to do this, your allergist office is fully stocked with epinephrine).    Most allergist have cozy rooms, TV's and dvd players, video games and books.  You don't have to pack like your moving in, I promise.

They started the appointment by taking her vitals, that totally freaked me out.  Would this be the last time someone took her blood pressure?  Her temperature?  Your mind goes there, it's really a strange dichotomy of emotions and thoughts.  

Then they brought in the first tiny syringe, full of cran-grape juice and .025 micrograms of peanut flour.  An amount of dust so small you'd not be able to notice it on a table.   And with no real fan fare, it was stuck in her mouth and she was swallowing what was a poison to her body.   Then nothing.  Nothing happened.  No hives, no swelling, no vomiting, no dropping blood pressure.  Nothing.  

Fifteen minutes later, they brought her another dose, just a tiny bit more peanut flour this time...and still nothing.   By the third "up dose" her throat was tickly, but we pushed through as that was a natural reaction, expected when her allergen hits there first.   By the 5th up dose, she had a tummy ache and we stopped.  Our nurse mixed me a container of juice and peanut flour that I would give my daughter two times a day, every day until our next appointment.   

The fear naturally moved on to the first dose at home, which also happened with zero issues.  So boring! All that anxiety and fear, for nada!   We were on our way.

The appointments marched on, by August she was eating little pieces of peanut; the size of tiny baby teeth).  We had a rhythm and we continued on, even taking vacations to Seattle and camping (don't go camping while doing OIT.  Trust me.).   We had very mild symptoms occasionally.  On one dose she had one hive on her left cheek for 15 minutes after each dose.  Another two brought excess saliva/phlegm which required a little cup to spit in go everywhere with us.  Gross right.  Every dose caused horrible gas.  Oh the smells were awful!  I discovered daily probiotics helped enormously.  

In November Dr. Baker and Marianne said, "Your done.  You've reached the final dose.  Stay on it for three months and come back for the 24 peanut challenge."   What?! Done.  No.  We like the safety of here, the consistency in seeing the two of you weekly.  Were we really done? Just had the challenge to complete and that would be it?  Not possible.  We left with directions to eat 8 peanuts 2 times a day, for three months. 

But alas, in February, weighed down by anxiety far worse then the first appointment we went back to Dr. Baker's office so that Liberty could eat 24 peanuts at once.  This time I was so frightened because that's a lot of peanuts.  A lot of what could kill her all at once.  Funny, that worry hadn't gone away.  We'd been long cleared to eat items with cross contamination.  Cleared to have peanuts back in the house again...but 24 peanuts.  Oh, the fear.   

It took her 34 minutes to choke down all 24 peanuts.  She hates the taste of peanuts.  And then nothing.  Nothing but celebrating! 

We graduated from OIT in February.  Now we eat a daily maintenance dose of 8 peanuts a day, and that keeps Liberty safe from accidentally ingesting peanuts. 

OIT might not be for every family, but it was absolutely the most amazing thing for my family.  In just this weekend we went out to dinner and had a brownie ice cream sundae (IN A RESTAURANT) and we ate at a huge buffet and I didn't even pay attention to what Liberty was eating!  She just ate what she wanted.    We're hoping to go to Africa in a year, and we've flown and I didn't say a word to anyone about her peanut allergy.   We go safely everywhere, I never even think "what if" any longer.  My daughter says it best, "We're free!"

We still carry an epinephrine injector with us always.  OIT is a treatment not a cure.
 

Living With Food Allergies

We can probably all recall the day we learned that our little ones had food allergies.  The fear, panic, resentfulness and anger...the stubborn defiance that food couldn't, wouldn't control our lives.  Until you arrived home and realized you had a pantry full of peanut products and reading labels would now make shopping trips last for days and the grocery store would be crawling with germs and probably shopping carts covered, dripping in peanut butter.  And then you decided that you just wouldn't ever leave the house.  You would make everything from scratch, you would learn to sew, you would home school, your house would become the only safe place for your child to exist...

Sounds to me like a prison.  We get one life.  You should be living it.  Living it with food allergies.  When you had that precious baby you imagined all the things that child would do; go to school, go on dates, go to college, get married...maybe in between they would play sports, Easter egg hunt, trick or treat.    Food allergy fear lies to us though, it tells us they cannot do any of those things because a peanut will sneak out and grab them, it will kill them.

In ten years of LIVING with food allergies we have traveled, eaten out, played soccer, soft ball, tennis, we have hunted eggs and spooked neighbors, we have gone to school and home schooled, we have  been in 7 dance recitals and that many week long rehearsals and we have done so safely.  You can too, it just takes planning, precaution and education.

First, a dose of reality.  Peanuts (or any other allergen) could be present.  But they probably aren't, and even if they are they probably won't hurt your child.   Obviously, there will be peanut products at the grocery store.  Wipe down the cart, and avoid the bulk section (nothing there is safe anyway!), walk down the peanut butter isle to show your child it isn't scary and it won't hurt them (everything there is sealed).   Go to the park and play!  Run around, use the swings, swirl till you think you might throw up.  Wash their hands before snacking. 

Do the Easter Egg Hunt, participate in the Valentine Exchange and go Trick or Treating.  Your little one won't mind trading for safe filled eggs or safe Halloween Candy and your older child will love getting to pick out their traded for treats!   For Easter, consider hosting a hunt, then set the rules! No food or only safe candies are both perfectly fine...and kids will love the thrill of the hunt regardless!  For Valentines Day use the www.snacksafely.com list to provide loads of choices for treats to share in the classroom.   On Halloween consider having two of the exact same trick or treat bags, when your kiddo gets home swap immediately for the safe bag (this is a big one for younger kiddos or those with special needs), keep a couple safe treats in your pocket in case the urge to sample hits.  Put all the unsafe candy in a box and ship it overseas to our Service Men and Women.   Teach your child to not touch unsafe candy and to politely decline if needed. Or if you'll only be in your neighborhood deliver a safe treat to your neighbors houses prior to the big day, with a note describing your kiddos costume and ask for their help! Your educating again! We have safely enjoyed these activities for years, your kiddos will be having a "normal" experience and will be LOVING life!

Sign them up for clubs, sports teams and dance.  Talk to the coach or teacher, educate them about your child's food allergy.  Ask that they either forgo snacks or pick snacks from a safe list you provide.  Pack your own safe snacks just in case a parent forgets or just disregards.  If you overhear a parent saying something unkind, resist the urge to kick them, instead offer some gentle education.   

Go out to eat! You deserve a break from the kitchen every now and again.  There are lots of safe chains, but you might also have a neighborhood place that you'd love to try.  Call ahead and talk to the manager or chef, get a feel for their knowledge and willingness to provide a safe experience.  Avoid Chinese, Thai, African and Mexican (mole sauces have peanuts often), but there are safe exceptions for Chinese and Mexican, PF Changs has a great allergy menu and Q'doba uses no nuts.  Bakeries are a general no go unless you can find a peanut free one.  

Travel.  If at first all you do is drive two hours away, that's okay.  Your getting out of your comfort zone.  Your going to be cautious, prepared and confident.  Call the hotel and talk to them about housekeeping really deep cleaning your room, see if they have a mini fridge you might use.  Pack safe snacks and treats.  Call restaurants in the area your visiting so you have a safe game plan for feeding your family.  If your unsure about an attraction you may visit, call them too!  Every time you call, you educate.  I also will check out the medical facilities, it's natural to want to know where you'd be going in case of an emergency (the emergency could be a broken arm!).   It will also empower you to feel good about this vacation, you'll be able to relax and enjoy. 
If your needing to fly, do it! You can do it safely, you just take the same steps in protection.  Call the airline ahead of time (Alaska, Jet Blue, Southwest, and Delta all have good allergy policy) to alert them to your child's allergy.  Carry extra epinephrine in case of emergency, and safe snacks for the flight.  Pre board, wipe down your seats and tables, introduce your family to the flight crew, thank them A LOT.  When your neighboring passengers board, introduce your kiddo to them (educate) and offer them safe snacks if they happened to buy peanut products prior to boarding.

If you want to home school, do it.  If you don't want to, that's just fine too.  Food allergy kids have a protected and legal right to attend public school.   Many families choose to write a 504 to detail the type of accommodations their child will need during the school day to keep them safe.  Most schools will not go peanut free and frankly, that may not keep your child safer.  Peanut free schools might make other families resentful and could make teachers complacent.  More commonly classrooms will be allergen free, and hand washing after food will be mandated.  Also, you might ask for food free celebrations or again that food for celebrations come from a safe list you provide.   Your teacher should be able to alert you to upcoming crafts that might use food or potting soil, and classroom celebrations.  Consider offering to be the class mom, you'll have total control!  

Maybe the most important thing to remember is that you are setting the tone and example for your child and how they view their food allergies.  If food allergies are just a part of them, like blond hair and blue eyes and not what defines them, their life will be much fuller and so will yours.  You won't just be surviving food allergies you will be thriving with food allergies!

Cherish your yesterdays, dream your tomorrows and live your todays. ~ Anonymous