Week One DOWN!

Our first full week of OIT was great!  Despite a few hiccups,  Molly is tolerating her dosing very well. Occasionally she has some stomach discomfort but have found making sure she eats well prior to dosing really helps.  In the middle of the week, she spiked a fever with a stomach ache and became lethargic.  I called Dallas Allergy and Asthma to update them of the situation.  As usual, they responded quickly and with concern.  Dr. Sugerman was not available, but Dr. Wasserman was on-call.  For 2 doses, we dropped her dosing down by half.  If her fever continued, I was to call back for further instuctions, if her fever stopped, I was to increase her dose back to normal.  Luckily Molly was fine the next day and was able to go to ComicCon in Indianapolis with her dad and sisters.  We will updose again this Friday before we take a mini-vacation to SanAntonio!

Matt, Molly, Sophia, and Gabrielle dressed

as the Powerpuff Girls and the Professor

 

And so it begins, a food allergy champion in the making!

The past week has been, well, amazing for Molly Rose.  Molly began OIT on Thursday, March 6th.  LIFE CHANGING EVENT! 

 

 

We started the day with our awesome RT, Amanda, checking Molly's vitals and making sure we were prepared and ready to start.  Then, the physician's assistant came to check Molly out and answer any last minute questions that we had.  Then, Molly went to big room where OIT is given (it's a room filled with a TV, reclines, table and chairs and games to make the kids and families feel more welcomed and relaxed.)  Amanda gave the dosing schedule to Molly so we could keep track thought the day.  The above pictures are Molly's Magic Potions (aka OIT solutions- peanut, walnut, and cashew flours diluted in different flavors of koolaid.)  Molly began her dosing, every 15 minutes and up-dosing every 30 minutes.  During this time she played games on her Kindle, read a book, had some snacks and even worked on her math homework!

The first day of OIT took about 8 hours.  Molly was a ROCKSTAR patient!  She tolerated all of the dosing well with the exception of our last dose.  Molly had a mild reaction that caused her lips to itch and made her stomach hurt.  Molly isn't much of a complainer so she didn't say anything to me until I asked her if she was okay (something we had to talk about, during OIT you have to tell an adult if ANYTHING is different than normal, ANYTHING!!). The staff at Dallas Allergy and Immunology were totally on top of the reaction.  Immediately getting the physician's assistant, checking vitals, asking questions and getting emergency medication orders ready just in case the reaction progressed.  Thankfully it did not.

The physician's assistant decided it would be best if Molly's dose dropped back a dose.  That is the dose we came home on. 

Since we live so far away (Indiana and the OIT program is in Dallas, TX) we won't be back for at least two weeks.  Dallas Allergy and Immunology made sure we have plenty of solution for dosing at home.  They sent us with the bottles in a Thermal bag with cool packs and a letter for the TSA for transporting more than 3 ounces of fluid to carry on during our flights back and forth. 

Most importantly, Molly felt safe, secure, and hopeful!

Barney Butter?! Who knew!?

In the last 10 years, our family stayed away from nuts and peanuts.  We kept a tree nut and peanut free home.  Matt and I did not eat nuts or peanuts away from home unless we knew for sure that we would not be seeing Molly.  It was fine- no problem for us to not eat them, no big deal. 

A week ago Molly had an almond oral food challenge and passed... HOORAY!!!  Not only can Molly eat almonds without having a reaction- Dr. Sugerman is encouraging her to eat almonds on a regular basis to avoid future reactions!  Life changing stuff here!  Honestly, it was nerve wracking for her, for me, for her dad, well really the whole family.  Most of her life (her first reaction to peanut butter was at 6 months old) we have been told to STRICTLY avoid ALL NUTS.  PERIOD.  Even if she had not had positive skin and  RAST testing to tree nuts, we would still have been told to avoid them as many nuts and peanuts are manufactured together.

Fast forward 9 years and we have seen many changes in the allergy world.  The availability of peanut and tree nut foods has grown as the presence of food allergies in the community has increased.  We were able to find almonds that were not processed around other nuts or peanuts.  Molly isn't crazy about them but will eat them.  We tried almond milk, but unfortunately she isn't a fan of that either.  So I started looking at nut butters.  I could not find any safe almond butter at our grocery store, all had peanut and cashew warnings.  I started looking on the internet and found other moms in similar situations talking about Barney Butter, an almond butter that is safe for those who have other tree nut or peanut allergies.  I ordered from Amazon, and thanks to Amazon Prime, it was here in two days! 

After scrutinizing and double checking the label, I tried it.... OMG.... my mouth was in heaven.  I had forgotten how great the creaminess of a nut butter could be (I don't care for sunbutter or soy butter to eat, just for baking).  Molly tried it.  It was okay with her although she wasn't nuts about it (no pun intended!). She decided it was better than almond milk or eating almonds.  Every couple days or so, she eats a BB&J sandwich or a spoonful.  And that was the goal, to find something she could tolerate eating regularly, but for me, it's hard to keep my spoon out of that jar... who knew it would be so good!!??

SO MUCH EXCITEMENT!

I'm not even sure where to begin!  Molly, and our family, are going to be adventuring into a new world of OIT.  What is OIT, you ask?  AWESOME QUESTION!  OIT is oral immunotherapy.  For us, that means that Dr. Sugerman, of Dallas Allergy and Immunology will begin giving Molly micrograms of peanut and tree nut in a liquid solution in small doses everyday.  The long term goal is for Molly to be able to tolerate whole peanuts and tree nuts.  Molly has had past anaphylactic reactions to peanuts and carries Auvi-Q an Epinephrine auto injector (similar to Epi-pens) with her at all times.  Is this scary for us?  YES.  Will it be life changing for us?  YES!   Is is it safe!  It does have risks, however, in a controlled setting, under the supervision of an allergy doctor, the risk is minimized (DO NOT TRY THIS AT HOME ON YOUR OWN!!!). For many years, allergist have done OIT with patients who are allergic to medications such as aspirin and antibiotics safely. 

Molly had her first appointment recently and it was fantastic.  Molly had a peanut component test done.  We had never had this lab before and even though we already knew that Molly had anaphylactic reactions in the past, it confirmed what we already knew.  Molly had positive results for 3 of the different components.  Most importantly, she tested positive to ara h2, the peanut component associated with anaphylactic reactions.  Although seeing this result on paper was kind of a bummer, it did not change anything and some other RAST scores indicated that Molly might be able to have a food challenge to almonds.  Molly has had low RAST scores but high skin test scores to almonds in the past (this is probably due to be amazingly atopic, love that eczema!). Molly successfully completed an almond food challenge, eating an amazing 42 almonds that day in a period of 6 hours!  HOORAY! 

Dr. Sugerman also told us he thought Molly would be a great candidate to try multiple OIT at once, taking peanut, cashew, and walnut doses all at one time!  She will be one of the first to try this at Dallas Allergy and Immunology- we are excited because that will shorten the duration of the program for us, which is normally 6 months for EACH allergy. 

We head back to Dallas on March 5th and begin the program officially on the 6th....keep following us in our adventures in OIT!