1 year anniversary of OIT




 
One year ago today, we walked in for the first day of OIT with our eight-year-old daughter.  As parents, we were anxious and excited all at the same time.  The anxiety resulted from years of conditioning ourselves to protect our daughter from any ingestion of peanuts.  We had even trained her as best as any 8 year old can be. The excitement came from the small seed of hope that had been whispering, “what if this works?” So armed with nothing but hope, prayers and two epi pens, we embarked on this journey. Some people from the OIT groups may recall that I’ve posted a quote several times that resonated with me during our decision to do OIT. “May your choices reflect your hopes, not your fears.” I don’t know the author, but I found it to encompass exactly how I felt about starting OIT.  Food allergy living can be isolating and scary.  While it seemed scary enough on that first day, we weren’t isolated anymore.  We had Dr. Agrawal with us every step of this journey.  And though we didn’t know him very well at the time, we soon learned that he was the most dedicated doctor that we’ve ever known.  

Maintenance!!!

I am amazed, thrilled, relieved and thankful! I'm feeling all the emotions. We began this journey with Chloe on January 25th.  She has taken a total of 309 doses each and every day to get here.  We talked on the way to her appointment that it's been a lot of peanuts, applesauce and ice water, but it's also been a lot of fun on our little family trips to the doctor office about an hour away.  It's been ridden with anxiety at times, especially in the beginning.



Updose #18 - The next to the last

Today's updose was wonderfully routine.  Chloe went up to 6 peanuts.  We had been instructed on some small updoses up at home to get her ready for this jump. So this is the next to the last updose before she reaches maintenance!  That's so unbelievable!

Everything went fine and we got her IGE blood test results.  From what I've been told, the blood level for peanuts will go up before it comes down.  Chloe's is up higher than it was when we started.  It is up to 45 from 39.  It's still lower than it was in previous years though - her highest was 68.  There is also a blood test that breaks down the test by the peanut's individual proteins to see which particular proteins the child is allergic to.  Some proteins are more often associated with anaphylaxis than others.  Chloe's numbers went down on the one that is considered the "worst" of the proteins so that is encouraging.

Several other nuts came back as slightly positive that were previously negative.  After speaking with Dr. A, he assured me that these are very low numbers and not to be worried over those. The only nut that went down was pecan.  Walnut was higher than expected as well.  So I am going to ask Dr. A to do a skin test at her next appointment.  Then he can decide if she will challenge pecan and walnut or if it's going to be another journey with OIT.  We will do whatever it takes.

I'm so thankful that Chloe has done so well.  Last Thanksgiving we had just heard of this thing called OIT.  We were asking questions, praying and trying to decide if this was something we wanted to try.  I'm so thankful that this Thanksgiving we can celebrate that Chloe is almost at maintenance and her life is much safer and she has much more freedom to live without worrying about food harming her.


Updose #17

Today was a great updose day !  Chloe went up to 4500 mg, which is roughly 4 1/2 peanuts!  She has been doing fabulous and we hope this continues.  We found out that she will only need two more updose appointments to get her to maintenance.  We are 9 months in at this point and it's been a long journey.  It's been mostly a very smooth journey and I am so thankful for that.  I feel that God has walked us through this, especially given the anxiety that I had in the beginning.  It is a wonderful feeling to see the finish line and I pray that everything continues to go smoothly.  Look at all the peanuts in this cup!  My brave girl takes them like a champ.


Updose #16

We had to cancel Chloe's last updose appointment so it has been almost a month since her last big jump. She had been on 2800 mg for two weeks prior to today's appointment.  Today she went up to 3500 mg, with instructions to go up to 3600 mg at home after several days.  It is exciting to think that she will reach maintenance in three or four more appointments if all continues to go well.  While discussing this, Chloe recently asked how long does she have to keep eating peanuts after she gets to maintenance.  I explained that, as far as we know, it will be for the rest of her life.


I am thrilled that she is eating the 3 1/2 peanuts daily without any complaint.  She still doses with chocolate chips to mask the flavor of the peanuts.  Once she reaches maintenance, she will have more options to change things up every now and then. We have refrained from changing it up yet, because everything is going so well and I am devoted to measuring it all precisely at this point.

Update 10/15: Chloe had the flu shot yesterday. There was no issue with today's dose and she is feeling perfectly normal. She has had a few itchy spots this week, but nothing of concern. We are excited to see what the dose goes up to next week!

Note: In the beginning, I refrained from including actual dose numbers in my posts because I didn't want anyone to attempt this without the supervision of a board certified allergist.  I now include our dose levels because many parents in the early days of OIT wonder how the schedule goes in the later stages. No one should ever try this at home, especially at these higher levels.  Our doctor tailors the protocol to each patient and takes their particular case into account before determining what the dose at each visit.  Chloe's path is unique to her. I just wanted to mention this since I include these details now. I also write this blog to serve as our memoir of this process.
 

Updose #15

I was a little hesitant today going in for Chloe's updose.  She woke up with a slight sore throat.  With OIT, the little things can make a parent nervous because you don't want to put too much strain on the child's system while it's working to accept the allergen. She has also been having lots of "itchy spots" as she calls them.  Basically, they are random hives, usually just small in size and have been on her extremities.  This past week she had one on her chest and one on her back. Some days she has this happen up to four or five times and then other days she doesn't have any.  With the dose getting so much larger, it just makes me wonder if we are pushing a little too hard.  But again, since these never progress or accompany any other symptoms, I think we don't really need to stress too much. The doctor checked her throat and thought it looked healthy so that wasn't an issue.

So at today's visit, we went from 2000 to 2600 mg, with the okay to up a little more at home in a few days.  Chloe seemed fine and everything was great, but I did notice that she had a small hive on her lip.  This happened once before at an updose, but we knew the liquid solution had touched her lip.  I was pretty certain today that this wasn't from contact.  It was about an inch away from her lip, but very small.  We waited to see what would happen and sure enough, after about 15 or 20 minutes, it resolved without any cream.  She did say that the spot was itchy and her lip was as well.  But thankfully, it all passed.

Update: She stayed on that dose for five days and then went up to 2700 mg at home.  She has had a few spots, but all have been small and infrequent.  I'm feeling like she is handling this dosage just fine.  She was invited to a birthday celebration this weekend.  I was able to tell the mom that Chloe could have what the other girls were having.  She and I are feeling the freedom and it's a marvelous feeling!  Chloe gets to be fully included and I get to worry less!


Updose #14 and Update

What a blessing to say that we had another wonderful updose appointment today.  Chloe went up to 1900 mg with a plan to move up at home in a week to 2000 mg. (which is basically 2 whole peanuts!)  The amazement never ceases!  We also got the okay to switch to salted roasted peanuts.  Up until now it's been bland, roasted, unsalted - the plainest way to eat a peanut.  We looked at a rough outline of how we might proceed in the near future, assuming all continues to go well. I'm not rushing it and I hate to even put this out there because I don't want to jinx our progress.  I guess it's okay to have a rough outline, but I still believe in taking this one day at a time!

Update 9/1/16: Chloe stayed on 1900 mg from Tuesday until Sunday.  We tried the salted peanuts and she said they are better, but still doesn't love the taste.  We are still dosing with a few chocolate chips and she doesn't seem to mind the taste.  On Sunday we moved on to 2000 mg.  Chloe has had a hive on her chest and one on her back, along with her eczema bothering her slightly.  She's had rosy cheeks just about every afternoon. I ended up giving her Zyrtec to help her with the itching before bed one night this week...even though she is so irritable after she takes it.  I hope the skin symptoms subside over the next few days before we updose again next week!