1/3 tsp = one peanut!

Today's OIT peanut blogpost is brought to you by:    

 


Lol.  That's right, you read correctly.  Today, we're sponsored ;)
It was our second time going to CHOP after it opened up about a month ago.  We wear masks and drive instead of taking the train.  Other than that, everything is the same. (I miss the train 😕)
Ella was particularly nervous today - (enough that she mentioned it various times throughout the last week) - because she made it to her final updose!  Why did that make her nervous?  Because it was 1/3 tsp of peanut flour, which equals (drum roll...) ONE peanut!  In case you didn't already know, that's a big deal :)
So, to help calm her nerves, I posted on FB the night before and asked for prayers that she remain calm and carry the "peace that passes understanding".  Feeling anxiety actually increases the chances of having a reaction - which we didn't want!  My wonderful community responded.

I decided that before we entered the building, I would let her read all the comments.  I gave her the phone after we parked the car, and I told her what I had posted.  Her first reaction was - "wow!"  cool! :)  She was overwhelmed by reading comments from people she's known since she was little, people she doesn't know, and people from NC, FL, PA and a couple from Peru :)  So, thank you.  You made her feel encouraged, loved and a little famous ;) lol
Once we made it inside, we checked in on the ground floor, then took the elevator to the 6th floor which has become all too familiar.

We check in the second time and wait to be called.  She seemed pretty relaxed.  But let me back up.  I mentioned above that this blogpost is also sponsored by Hamilton.  Let me explain.  We watched it for the first time over the weekend and Ella was very inspired.  I was as well...but for different reasons. lol.  She was inspired because she loves singing and acting.  I decided to download a few new songs for us to listen to on the way there and back, and imagine my surprise when I found the entire Hamilton soundtrack available on Amazon prime music - for free!  So, I downloaded some of the songs we really liked and surprised her with it on the ride down.  She belted out the words to every song and then we repeated them again :)  It was an awesome distraction.  So thanks Hamilton, Disney+ and Amazon for making that possible ;)
When she was called back, they took all her vitals (she's still 4'11...just can't seem to get to 5' 😂) and we got placed into a room.  CHOP has fun murals in every room and it helps us keep track of which ones we've been in.  Today, we got a new room with umbrellas...I tried to get her to take a picture with them but she declined ;) lol
The nurse and doctor were thrilled that she'd had no reactions with her last updose.  This was a long time coming!!  This process was supposed to be over in 3-5 months.  Instead, it has dragged on for 10.
I forgot her OJ to dose with so she had to dose with their applesauce.  She wasn't excited about that, but afterwards she said she wants to use applesauce everyday now!  So, I'm glad I forgot ;)  1/3 tsp is a LOT of peanut flour when you're mixing it with a bite of food 😝, but she put on the nose clip and ate it like a champ!

The nurse thought the nose clip was brilliant and said maybe they should provide those to all patients!  I said go for it - then they can't smell it!
She immediately dove into her popcorn and lemonade which is now her go-to after dose snack.  Your stomach has to be full beforehand, but you also need to snack afterwards.  This has become her ritual.  Once the taste in her mouth is gone, she removes the clip ;)

When they checked on her 15 minutes later she felt perfectly fine and an hour later, the same!  NO REACTION!!!  So incredible.  Although it was peanut flour, we still feel the celebration of her ingesting the equivalent to one entire peanut and having ABSOLUTELY no reaction!  CELEBRATE!

The next step is to go back in 2-4 weeks (depending on any reactions during that time period) and take with us a peanut M&M.

She will eat that (I keep telling her it tastes good but she's not going for it) as her dose for the next two years.  After that, she is welcome to try and increase her tolerance, but that is up to her...and it's a long ways away so we don't need to think about it yet!

We had a few questions now that we are nearing the end of this and our CRNP Elizabeth Hanna answered them all -
1.  if Ella accidentally ingests peanuts and we KNOW she has, do we skip the dose?  YES
2.  Once she is eating the peanut M&M every night, does she still need to rest 2 hours afterwards?  FOR THE FIRST YEAR OR TWO, YES.  THEN THEY START TO TAPER IT DOWN UNTIL IT IS JUST 30 MINUTES
3.  How often do we come in once she starts "maintenance" (one peanut)?  EVERY 3 MONTHS FOR THE NEXT YEAR.
4.  We didn't ask this, but she volunteered this helpful info - HOLD OFF ON EATING "MAY CONTAIN" PRODUCTS FOR 6 MONTHS.

Obviously, when we go to Peru we won't be able to go back every 3 months, but we'll continue the one peanut M&M per night and jump right back into the appointments once we move back to the States.

So, there you have it.  It seems like a miracle - although when I see her eat an actual peanut in a few weeks, I think it's going to hit home even more.  For now, we're enjoying the non-eventful dose today and praying that all her doses for the next few weeks will be the same.

------

PLEASE SHARE!  This blog/post is not private.  I am writing them because so many people don't know about this treatment.  Doctors and Allergists don't tell you.  It's something you have to find out on your own.  If you ask them about it, they will try and answer your questions, but if they don't offer the treatment themselves, then I guarantee you they aren't freely telling patients that OIT is an option.  So, please pass this on to anyone you know that has an anaphylactic food allergy.

This is the go-to page that explains which OIT doctors are recommended and the homepage has all the private practices that are offering OIT.  Just search by state.  But now, like CHOP, a few public places are jumping on board.  If you aren't sure about your local hospital, CALL them!  If they don't offer it, look into the hospitals in the biggest cities closest to you.  Do your homework and check out their protocols (make sure they aren't just jumping on the bandwagon but actually know what they are doing!).  If you have to drive an hour or two every 2-4 weeks, it's worth it.  Believe me.  I've even met people that drove 4 hours.  One even flew across the country!  It's worth the minor inconvenience, I promise.  In addition, any age can do this.  When Ella took her first food challenge there was a 1 year old in there doing the same.  Ella said she wished she could've done it earlier - kids that young don't understand the implications of what they're doing so there are no nerves/anxiety.  If you can get it taken care of before they start school that would be a huge blessing.  Sending a food allergy child to school is terrifying.  They're in an environment (possibly for the first time) where you have very little control.  As much as you want to protect them, you just can't.  It starts to fall on their shoulders - at the age of 5 (which is too much to ask from a 5 year old 😕).  So, look into as soon as possible!!

I started writing about our journey back in August 2019 when Ella went in for her "food challenge" - here is the first link:

https://laurieslittlemonkeys.blogspot.com/2019/09/peanut-oit-my-first-food-challenge.html

From there I tried to write (sometimes Ella helped me) every trip, although I missed a few - and then we couldn't go for 3 months because of COVID.  If you're interested and want to know more, go back and read our journey!  We want everyone to have the freedom of living without the fear of dying anytime you put food in your mouth!

https://laurieslittlemonkeys.blogspot.com/2019/10/my-first-updose.html
https://laurieslittlemonkeys.blogspot.com/2019/10/boring-weekjust-what-we-want.html
https://laurieslittlemonkeys.blogspot.com/2019/12/ellas-thoughts-on-this-adventure-and.html
https://laurieslittlemonkeys.blogspot.com/2019/12/updose-5over-halfway-there.html
https://laurieslittlemonkeys.blogspot.com/2020/01/trip-6but-still-updose-5.html
https://laurieslittlemonkeys.blogspot.com/2020/02/trip-7-updose-6-almost-half-peanut.html

God bless and thanks for following our journey!!

Trip #7, updose #6 - Almost half a peanut!!

Trip #7 to  CHOP

I thought it would be fun for this blog to interview Ella about the whole experience.  Once I started asking her questions though, I realized that wasn't going to happen ;)  lol  She was in no mood and she's done with the whole thing.  Had everything gone as planned she'd be in "maintenance" by now, but instead, she has two more updoses to go. That being said, because we were stuck so long at the last dose, only TWO more updoses sounds awesome :)  So, maybe the interview can come at the end when she's feeling more up to it.  For this blog, we decided to walk you through a day at CHOP...

Almost all of our appointments are around 10 in the morning so we catch the 7:30-8:30 train.  

The train is soooo much easier than flying or driving. It's a little disconcerting that there are absolutely no security measures, but we can arrive just 15 minutes before our train and wait at the door until we see that it's arriving.  So simple.  On the train sometimes we play games, sometimes we just chill on our phones and sometimes she has homework that needs to get done.

this is waiting for the train...she normally has some math to do so she either does it on the train or waiting after her dose

The train station in Lancaster only has a little store where we sometimes grab her a muffin since she needs to eat on the train.  But the station in Philly is huge and has tons of food options.  This week, we had enough time once we arrived to grab some breakfast.  As you can tell, she is less than excited to be there :) lol  Taking the train and doing OIT was at first an adventure...but 5 months later she is ready to be done and stop missing so much school.  

Tired, grouchy and fighting a headache :( 

From the train station, if the weather is nice (which it hasn't been since november), we walk.  If it's too cold, we take an Uber.  It's a mile and we always have our bookbags, so we normally take the Uber.  But the few times we were able to walk were nice :) Although a little complicated at first (trying to figure out where to meet the driver at the station), we've become pros and can now do it with our eyes closed ;)

chillin' in the uber and sporting her headache "preventer" on her hand

When we arrive we check into the Buerger building downstairs and then again to the allergy department upstairs on the 6th floor.  The initial wait is never long - then we get called back to our room.  The rooms at CHOP are nice and have really nice paintings/pictures on the wall.  Ella likes taking pics with them :) 

  After they check her vitals and get a baseline for everything, they give her the new dose.  We bring the stuff to mix with it (currently still OJ).  She's figured out that if she plugs her nose (see pic lol) she doesn't smell the peanut :)  

After the dose, she walks the halls for a few minutes.  She can't raise her body temp or heartbeat so she has to gauge how much she walks.  So, she usually walks a lap, we play a game while she has a little snack and then she walks a few more.  She's so creative that she makes it fun :)   see the pink on the floor?  She can only step on those ;) lol

If she doesn't have a reaction, we leave after an hour.  If she has any kind of reaction, we stay an extra 30-45 minutes.  The wonderful nurses and doctors are so great - checking in on us every 5 minutes or so.  When we finish, they send us on our way with our new dose, new spoons and new peanut flour.  This week was updose number six - almost a half a peanut!  Isn't that unbelievable?! She can actually eat a half a peanut and be okay!! I still can't believe it.

finally got some big smiles from her at the end :) 

Thank you for following our journey.  If you know someone with a life threatening allergy, please share OIT with them and let them know it's a choice.  It could save their child's life.  <3 

If you are just jumping in with our journey, check out the previous posts:

updose 5 part two http://laurieslittlemonkeys.blogspot.com/2020/01/trip-6but-still-updose-5.html

updose 5 http://laurieslittlemonkeys.blogspot.com/2019/12/updose-5over-halfway-there.html

updose 4 and ella's thoughts http://laurieslittlemonkeys.blogspot.com/2019/12/ellas-thoughts-on-this-adventure-and.html

updose 3 http://laurieslittlemonkeys.blogspot.com/2019/10/boring-weekjust-what-we-want.html

updose 2 (first real updose after getting the first small dose) http://laurieslittlemonkeys.blogspot.com/2019/10/my-first-updose.html

first appt - food challenge http://laurieslittlemonkeys.blogspot.com/2019/09/peanut-oit-my-first-food-challenge.html

Trip #6...but still updose #5 :-/

6!

Ella took her 6th trip to CHOP this past Friday.  There was good news and bad news.  The bad news actually happened last month when the updose she took in the last blog on December 21 had to be taken back down to what she was doing before.  We tried taking it for a week but she had stomach pains every night and was to the point of wanting to stop, so we went back down.  Sort of.  If you remember from the previous blog, she was taking 2 teaspoons of oat and peanut flour mixed.  It was a lot of flour.  We were excited to go down to only 1/16th of a tsp - so much easier to mix!  Unfortunately, she had to go back to the mixture because of the stomach pains...but all we had at home was peanut flour - no mixture.  So, she had to dose every night with 1/32nd tsp :)  Have you ever seen a 1/32nd teaspoon?  lol probably not...you have to special order them :)  It was a really small dose - but it was straight peanut flour and she did great.  

1 tsp vs 1/32nd tsp

 So, her trip to CHOP this past week was to try and updose back up to 1/16th like we tried in December.  We were a little nervous because we felt stuck at this dose and were afraid we'd be here forever!   But it's all good - cause she had no reaction!  She has now taken the dose the last two nights and hasn't had a reaction either - so we're ecstatic!  In addition, she found a way to hide the smell of the peanuts - orange juice!  Yea!

trip 6!

So, even though we had to repeat a dose for over almost two months, she has now gone up to 1/16th tsp of peanut flour and only has 3 more updoses until the end!!  She goes back on Feb. 11 - pray that all goes well :)

thanks and thanks for following our peanut oit journey!

- Ella and Laurie

updose #5...over halfway there!

Number 5!!

Well, everything that could've gone wrong this morning seemed to have gone wrong 😜.  We left late for the train station and halfway there realized we left her epi at home and had to race back to get it.  We arrived at the train station only 8 minutes before the train was to leave.  That's when I realized that I booked the wrong day for the train, so I had to book it again real quick with my app because there were too many people in line to do it in person.  Thank goodness there were still seats and it wasn't full!!  But now I have to call and see if they'll credit us with the train we paid for but didn't take!  ugh!

Once we got on the train (phew!), it got delayed because something broke down on the track.  The conductor apologized for the delay and said that we were lucky we didn't have to stop altogether...so I guess that's a plus! 

When we arrived at the train station in Philly, we called an uber because it was very cold and we didn't want to walk.  The first one came and went saying we weren't at the right pick up spot (he was wrong).  The second one was very nice, but went the wrong way and a normally 7 to 8 minute ride took 15 minutes.  Overall, instead of getting there almost an hour early like we should have, we got there five minutes late!  Thank goodness for the train though because traffic was terrible. 

Ella had no issues with her last two weeks of doses so she "graduated" from oat flour mixed with peanut flour to just straight peanut flour.  we have been looking forward to this! Why?  Check it out...

the flour on the left is what she has been doing for the last two weeks, the tiny bit on the right is what she is doing now!

She had updosed to 2 teaspoons of oat/peanut flour...which is a LOT of flour to mix with something.  It thickens very quickly and it has a not so yummy taste.  Ella had a rough week making herself take it every night - gagging her way through her D'animal mix.  So, when she graduated to just 1/16th a teaspoon of peanut flour we were ecstatic!  It's nothing!  It'll be a piece of cake! 

Well, we were wrong 😢 Yes, it was a smaller amount, but since it is straight peanut flour it has a strong peanut smell.  She smelled it before the nurse even handed her the cup :( The smell alone was enough to make her queasy.  Drinking it upset her stomach.  We had to stay an extra 45 minutes to make sure she was okay because she kept having stomach pains.  She fought through it though and we stayed distracted by playing games :)

Since we had to stay late, we couldn't eat lunch and still make our train, so we decided to get a later train and eat a slow-paced lunch at the train station (we were hungry!).  We got home an hour later than expected and a little tired from the fretful morning, but it certainly could have been worse!

After doing this dose for 3 nights though, I can see that it's only going to get harder and harder, not easier like we were hoping.  Please keep her in your prayers.  She wants to do this, but forcing herself to drink the "concoction" is not easy.  Every night is a battle.  It's still giving her some stomach pains - which could be the peanuts or it could be anxiety.  Either way, if it's this difficult with just 1/16th of a teaspoon, I can't imagine what 1/2 a teaspoon will be like! 

She only has 3 more updoses after this (she will be going back every month now instead of every two weeks).  And then her last "updose" will be a full peanut which she will do in a different part of the hospital closer to the ER.  That last step is called the peanut "challenge".  That is our end goal, and we'll hopefully get there in April!  That would be an awesome Easter present :)

It seems like an eternity away and it sometimes feels like an unattainable goal.  Please pray for resilience, no reactions and for peace - she could use it!

God bless and have a Merry Christmas!!

Chillin in the train station after lunch :) 

Ella's thoughts on this adventure and some problems we encountered last month...

It's been 4-6 weeks and two doses since our last blog post! We got some disappointing news after her second dose.  She had a big reaction one evening in October and we ended up in the emergency room.  Thankfully, we never actually had to do the epi pen or check in to the ER.  We got as far as the waiting room and stopped.  After experiencing some stomach pains, then a stuffy nose which progressed to breathing problems, she took some Benadryl and we headed to the ER while I talked to the doctor on call.  From the time we got out of the car to the time we entered the building, the medicine must have kicked in because she started to breathe easier.  So, we sat in the waiting room for 30 minutes to make sure everything was fine.  Once we felt assured that the reaction had passed, we went home.  Because of that reaction, her allergy team decided that it would be best if she goes to CHOP every month instead of every two weeks. 

doing math homework on the train :) 

This would mean, of course, that the process would take twice as long as originally intended.  We were disappointed, but in the big scheme of things, it's not that big a deal.  In all, I believe there are 9 up-doses - including the final peanut challenge.  So, it meant extending the process an extra 3 months. 
However, after doing very well the last three weeks and having ZERO reactions, they decided to try the two week up-doses again.  Yea! (i think lol).  So, we're praying that there are no reactions.  We will do our part by making sure she has a full stomach beforehand and that she rests completely for the two hours afterwards.  The two reactions that she has had both came when we went out and did some "light" activities 30 minutes to an hour after her dose.  We won't do that anymore! 

#4!

Yesterday, she had her 4th updose.  She went from one teaspoon of oat/peanut flour to two. 
This is a big jump and we were a little nervous.  It's also a LOT of powder to mix with Danimals yogurt (which is what we are now using).  She has a hard time not gagging while drinking it because the taste is bad!  The good news, is that this is the largest amount of powder she'll have to do.  From here, she goes to straight peanut powder and it will be a verrrry small amount :)   Hopefully we get there in just two weeks!
Here are a few pics of our trip yesterday. 

waiting for the train when it's freezing outside isn't quite as fun:) 

CHOP has beautiful paintings on their walls :) this week, we got the "elephant room"

taking her dose and trying to keep it down!

what has now become our tradition - eating at wendy's in the Philly train
station while waiting for our train home :) 

Ella had a writing assignment in school to write about a "personal triumph".  So, she wrote about her journey so far...enjoy :)

 Overcoming Allergies

By: Ella Juarez

      As soon as my mom and I stepped out of the train station doors in Philadelphia, we heard and saw all sorts of commotion outside.  Graffiti was sprayed on almost every wall. The colors ranged from red to purple and every color in between. The car horns honked furiously and bicycle bells dinged with their bags in the little baskets that rustled throughout all the streets. We looked up and saw that the clouds danced happily to the rhythm of the street song. My mom looked at the GPS on her phone, located our hotel, and we started walking. Me and my mom started taking the steps of a lifetime adventure.

      “Hurry up,” My mom said, waiting for me and becoming impatient “it doesn't take that long to eat Wendy’s!”

“You don't know that!” I said, my mouth full of hot breaded chicken nuggets, with crumbs coming out of my mouth. After a little while, I’m done eating, and we already started walking, for we didn't want to check into our hotel any later than 7 o’clock, and it was already 6. We walked, and walked, and walked, admiring the scenery every step of the way. There were construction sites, buildings as tall as skyscrapers, and cars turning left and right and the traffic never stopped. After about 20 minutes, we were on the sidewalk leading to our hotel. Around it were restaurants and shops. The automatic door kindly welcomed us into the hotel, and what we saw! It was very beautiful, and had decorations in the perfect spots. My mom checked us in, while I almost fell asleep on their extremely soft couches in the lobby. We got our keys, went up the elevator, and started unpacking in our room. When we finished, it was 7:30, so i decided to make microwave popcorn and find movies on the TV. My mom and I decided to watch guardians of the galaxy until 10:00. Then we went to bed. What was bad was we had to wake up at 7:00 AM to walk to CHOP. so we had to get ready really quickly and get out the door. Once again, my mom pulled out her GPS, and we started walking to the hospital. After turns, walking, crosswalks, and more walking,we arrive, but then get lost. A very kind nurse directed us to CHOP. It was so cool! We waited patiently (well not that patiently) until our nurse came for the qualification to see if we could do our dose. The waiting room was very children friendly, a lot of posters and colors. “Please follow me to the peanut test.” She said. I felt scared. My nerves suddenly awake when they heard the sound “peanuts.” My stomach tingling as if spikes were poking through it. This was it, we step into our small curtain closed area, I sit down in what looks like a fancy dentists chair, and out comes our nurse. She came with a bowl filled with the tiniest amount of oat and peanut flour. We give her the pudding that we brought from home. She leaves to go to mix it up in the back room. I hear a baby’s voice through the curtain “a baby is doing this OIT?” I thought to myself. It kinda looked like my mom was thinking that too. My thought burst when my nurse came out again with the pudding all mixed into the oat and peanut flour. The confusing mixture of my first dose ever, the mixture of pudding and peanuts, was coming straight towards my mouth, not hesitant one bit. And chomp! I have eaten my first dose ever. We waited for about 30 minutes. “I’m back,” Our nurse said “and I have your second dose now”, which was a little bit more than the first dose. And then this repeated again, but then I started feeling bad. So we waited to see if I would have an even bigger reaction. Good news, I didn’t. Afriad I might get sick again, we stopped updosing for the day. I got to go home, and then my mom got an email. We qualified! My whole life, changed forever. A small day that will be one of the biggest days ever in my life, just ended. My fist real dose starts tomorrow at 9. So we had to be there as quickly as possible.

     That is the story of my trip to Philadelphia and the trip that will and still is changing my life. Right now I am at 1 teaspoon of peanut flour and oat flour which is a lot. That one trip meant so much to me and my health and future. The trip that started a whole new adventure...

Boring week...just what we want!

Her 3rd updose!  

This was a boring and uneventful two weeks - couldn't ask for anything more :) She had to miss one dose because of a migraine, but had no problem the next day picking up where she left off.  So, instead of a blog this two weeks - since we have nothing new to report - she wrote down some things that she is looking forward to once she no longer has to fear cross contamination or "may contain peanuts" labels...

1.  trying a teeny piece of a Reese's to see how it tastes :) 

2.  eating cross contaminated food 

3.  eating chinese food!!

4.  Eating foods that say "may contain" like M&M's (yum!) and chocolate covered pretzels.

5.  Eating foods (like at church) that may not have labels on them but we know don't contain nuts (like cross contamination). 

6.  traveling anywhere and not worrying! (amen to that!)

and I'll add mine in:

7.  not worrying about having an accidental ingestion at a friend's house or at school.

8.  not having to worry about someone bullying her (someone once shoved a candy wrapper in her face on the bus that contained peanuts)...sad, but true.  

9.  giving our puppy dog treats with peanut butter in them.

10.  having the security that when she makes a mistake (because we all do), it won't be life threatening <3 

My first Updose!

She didn't see the words on the window until I pointed them out to her.  I told her she's my hero for doing this :) She said she doesn't feel like one...but I disagree!

We've now been doing OIT for one month!  Ella was supposed to go back two weeks ago to get her first up-dose, but since she got sick and had to decrease her dosage, we continued with the smallest dose two more weeks.

Today, she went to CHOP for her first "updose".  They increased her from 1/4 tsp of oat flour mixed with peanut flour to 1/2 tsp.  It's still an extremely small dose - but the important thing is she took it this morning and had zero reaction!  Here are a few words from Ella...

hanging out in our room waiting to dose - passing the time :)

My first month was pretty simple. Most of the days were the same and the first couple of days I had pudding to mix with the dose, but then the pudding started to taste gross, so I switched to applesauce. It kinda had the same outcome as the pudding, except one time I actually had a reaction to the peanuts. But I think that was just because I was sick. I think that, because I was sick for the next 3 days (and she had to take 1/2 the dosage). The applesauce actually started to taste weird, so then I switched to a smoothie thing. And I still am taking that now.  I was a little worried the first couple times I dosed at home, but now I'm not.  The only thing I don't like about dosing is that I have to rest for two hours afterwards, which is always afterschool.  This is the only time I get to be active so I don't like having to rest.

We have been taking the train to and from Philly - so much more pleasant than fighting traffic and looking for parking!

Besides that one reaction (that was quite scary!), the month was uneventful - which is what we want! :) Hopefully the next two weeks are more of the same.  Thanks for following our journey!

God bless,
Laurie and Ella

Peanut OIT - my first food challenge!

Ella's Peanut OIT journey

Dose 1!!

What is OIT?  It's oral immunotherapy. Think of it as allergy shots, but with peanuts :)  It has been around for a decade but when it started it was just a few doctors doing trials with a few patients.  Now, it has become widespread through much of the country and many more doctors and hospitals are jumping on board. There is more data and experience so the treatment is available to more and more people that are suffering with life-threatening food allergies.  I have been keeping up with this treatment for ten years, waiting for a doctor that was within four hours of us so we could be seen.  Finally, I heard that CHOP (Children's Hospital of Philadelphia) was going to start the program.  We immediately signed up.  Actually, I signed her up years ago for peanut studies so she was already on the list.  We got lucky :) There are now 1000s on the waitlist!

The idea behind OIT is that you begin with a "food challenge".  The patient must eat a very small percentage (1/100th) of a peanut (or other food), wait 20 minutes, eat another small amount and continue this until the patient starts to feel queasy or sick.  One only needs to take two doses - which Ella did - to make it into the program.  If the patient needs to use the epi pen during that time, then they can not continue with OIT because the dose can't get any smaller.  We thought, part way through ella's dosing, that she was going to need the epi - but thankfully she did not. It got a bit emotional at times, but she powered through!

Now, over the next 6-9 months, she will "dose" every day.  There are restrictions and rules to keep her safe, so our lives will be different over the next year or so.  Every evening when she doses, she can not do anything to increase her heart rate for almost 3 hours. In addition, we will be traveling to CHOP every other week to increase her dose.  Once she gets up to 1 peanut, she will be done.  Being able to successfully eat one peanut means that could accidentally ingest up to 5-6 peanuts and be ok.  To keep up her immunity, she will need to eat one peanut m&m as "medicine" most every day for the rest of her life (there are certainly worse things! lol).  So, by going through this intense process for 6-9 months, she will be protecting herself the rest of her life from accidental ingestion.  Pretty awesome!  She is going to blog about her experience for the next 6-9 months so that other kids and parents can see what it's like.  I will add my "two cents" when needed and I'll be the photographer :) Take this ride with us and share it with other children and families that are suffering with a food allergy.  It is a fear that no one should have to live with every day - especially when there are treatments available!

From Ella...

Me waiting for the 

train going to 

Philadelphia

 Me on the train 

chillin'

 waiting for the doctor

to come get us for the 

treatment

 Finally eating my fist dose of peanut!  It's mixed with chocolate pudding :) 

 Me on my Ipad and

watching Dora

 Getting *real food after

my second dose of 

peanuts

 watching Harry Potter waiting

to see if i react to the 

peanuts

 My great nurse Meredith 

she took care of me :)

Swimming and relaxing at the pool at

our hotel after the

hospital

 I really enjoyed today. It was a little more complicated at first because there were a lot more people than i expected, and i didn't know I would react as much as i did, but it still wasn't that bad. I know the longer i do it, the more i will get used to the peanut doses every time I come.

-Ella