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!


Updose #13 - Smooth Sailing!

I am happy to post that we have been smooth sailing with Chloe's OIT journey.  It's been three weeks since her last updose.  Normally, we go every two weeks, but we had a scheduling conflict.  It was nice to have an extra week at her dose. The itchy lip seems to have subsided thankfully!  She is always happy on her updose appointment day!

 
Today she went up to 1400 mg.  That's basically 1 and 1/2 peanuts!  Over the months, this has become our routine, but I still rejoice every time we leave from a boring updose appointment and when she does well at home. After almost seven months, I still see this as a miracle every day.

A Whole Peanut! Updose #12

What a milestone!!!  We have been waiting for this...so easy to say "I eat a whole peanut every day". We had to tell the doctor that Chloe has had an itchy lip about three times while dosing at home.  Each time it went away quickly while drinking water and she took an antihistamine just to be safe.  Technically, her updose went to 1000mg, which is the average sized peanut.  Her updose today was a peanut that weighted 1026mg.  We are safe to go up to one as large as 1040mg. 



Updose #11

Today was a great updose appointment.  It was so nice to report to Dr. Agrawal that Chloe's skin has been doing so well.  She hasn't had any of the itchy spots or any random hives.  I firmly believe the probiotics are helping to prevent the eczema flares that she normally experiences in the hot, humid summers we have.  It's hard to believe that we have now reached some sort of comfort level that these appointments seem just like any routine doctor appointment.  She is now up to 750 mg and we will updose at home a little more per the doctor's instructions.  If all goes as planned she will be officially at a peanut (or a little more) at her next updose appointment.  So thankful that everything is going smoothly and she is moving right along!  Below, Chloe in the waiting room, playing with her ever growing Barbie collection.

Updose #10 & Insurance Issues

This post is the best kind...it could just be blank because the updose was so uneventful.  Or I could say it went awesome.  Both would be synonymous! Chloe went up to 550 mg., which is officially about half a peanut, but I'm finding it a bit more than a half.  She had no issues.  We met another OIT patient who travels from South Carolina and he is two updoses ahead of Chloe.  It was really nice to chat with another OIT mom...I probably talked her ear off!

We spoke to Dr. Agrawal more about cross contamination.  We also talked about the possibility of our insurance company not having him in our network anymore (which means they will no longer cover this treatment).  Dr. Agrawal emphasized that he is open to working something out and asked us not to panic over this.  So we are patiently waiting to see how this insurance agreement works out, but I'm not panicking!  It will be okay!


Update and Small Updose at Home

I am feeling so blessed that we had a great week after updosing last week.  She didn't have any skin issues at all!  Some weeks are just smooth sailing and some....not so much.  But as I have said from the beginning of this - we take it one day at a time.  That's the best advice I could give to a parent contemplating OIT.  It's amazing and it works, but it's not always easy.



At the last updose, the doctor instructed us to increase Chloe's dose to 400 mg. after a week, so that is what we did today!  Everything went well today!  While I measured out the remaining doses for the week, I kept running into several peanut halves that were too small for her dose.  So crazy!  If you had asked me last summer if I would be feeding Chloe peanut halves, I would have thought you were insane!  What a difference a year makes!  I didn't even know OIT existed last summer and now I tell everyone I can.  If you know someone with a food allergy, please tell them about OIT.  They may balk and say their child is "too allergic".  Ask them to investigate.  It's not for everyone, but I believe every parent of a food allergic child should at least look at their options.  Each family is going to have their own circumstances and reach their own conclusions.

Note: we still haven't tried anything new, but we did incorporate store-bought ice cream back into Chloe's diet.  We had avoided due to cross contamination of the machinery making other flavors.  So she enjoyed a homemade sundae this weekend!

Updose #9 - Cleared for Cross Contamination

Today Chloe went from 250 mg to 350 mg at her updose appointment.  She had a lot of eczema on her arms and we had forgotten her cream.  Luckily, Dr. Agrawal had some and applied it to her itchy spots.  This is par for the course for summer and her skin.  It's not a great combination. Other than that, she was all good.  We have been so fortunate to not have any gastro issues whatsoever.  So this should be the end of this blog post because we had a blissfully normal updose appointment.  But we also got some great news!

Rashy Cheeks and Eczema

Chloe updosed yesterday (Tuesday) and everything was great.  No random hive or anything strange.  She did have some rosy cheeks before we went to the appointment.  I think this was from being in the sun at the zoo the day before and also due to the sunscreen, which sometimes irritates her skin.

When she woke up on Wednesday, I was surprised to see a slight rash on her cheek, as well as a full eczema outbreak around her eyes.  This is not simply flaky dry skin.  This happens

Updose #8 for Chloe and some testing for Mom

A big jump for today (biggest so far)!  From 150 mg to 225 mg.  The appointment went great for Chloe.  No issues whatsoever.  It's a wonderful thing to come to an uneventful, mundane updose appointment!



However, it wasn't so uneventful for me...I had some skin testing done for the first time ever!

I had a bad reaction to some shrimp over 10 years ago and have since avoided all seafood.  After terrible hives and itching throat, I just felt that was enough to realize I was allergic. I'd never actually been to an allergist for myself.  But after having Chloe under the care of Dr. Agrawal, he encouraged me to do some testing and see if I was really allergic to shrimp!  And guess what....I'm not!  I did find out that I'm allergic to grasses.  My skin test was on Tuesday and I was still itching terribly almost 48 hours after.  Now I know why I think bugs are attacking my feet and ankles when I'm outside but never see bites...it's the grass pollen!  The skin testing is really not bad!  I'm thankful to have an OIT doctor who will help the entire family! 

Updose #7 - Real Peanut!

It took 116 doses of peanut flour and water to get to this appointment!  But here we are, well on our way on this path, and here at this milestone.  Other than Chloe's liquid doses in OIT, the last time she had any peanut product was the day she had her initial reaction.  March 4, 2009, to be exact.  She was 16 months old.  It was just a tiny amount of peanut butter on a Ritz cracker.  But let's get back to the present...Chloe's first dose of actual peanut.  The piece is a little smaller than 1/4 of a peanut.


Updose #6 - Last Liquid Updose!!!!

Yesterday marked 3 months of OIT.  This is a great appointment because Chloe is reaching a little milestone - the last liquid updose!  The next time she is here she will be getting little pieces of a peanut.  She is happy to know that the days of peanut flour and water are close to an end.  Dr. Agrawal told us that it will go much faster after she begins real peanuts.  There's no guarantee of a timeline, but if everything goes well she could be in maintenance by Oct/Nov.  I try not to look ahead too far and just focus on where we are currently.

Updose #5 & Some Skin Testing

I knew we had to discuss Chloe's skin before updosing today.  She has been getting a few random hives almost everyday.  We began to worry that it might be related to our dog.  The doctor wanted to do some skin testing for dog, cat and indoor allergens.  Good news is she tested negative to everything except one.  And thankfully - it wasn't dog!  It was cat.  Which isn't a big deal for us because we don't have a cat, although we had been talking about getting one.  I'm so glad we found out now. Photo below showing that she isn't a fan of skin testing, but she handled it in good spirits.  She had us all laughing with her facial expressions.

Updose #4, Update and Looking Ahead

Happy to report that updose #4 went well.  We could have made a bigger increase but we chose to increase it only 12.5 mg.  The doctor even joked with me about how I am.  He knows that "slow and steady" is fine with us and totally respects that.  Have I mentioned already how much we love Chloe's doctor?

Updose #3

This is the biggest jump in dosage for Chloe, which had me a bit nervous.  Chloe's skin is doing really well right now.  There are no signs of eczema flaring, or any weird hives/rash, so that made me feel much more at ease about updosing.  Her cheeks were a little flushed this morning prior to dosing but we think that might have been due to getting warm on the car ride there.



Anxiety and Hope

This post was written a few weeks ago and I've just now decided to make it public...see below.
 
I'd like to preface this post by saying that the main purpose of this blog is to serve as a memoir of Chloe's progress with OIT.  Having said that, it's also nice to think that our blog might offer someone else contemplating this therapy an insight into one person's experience.  What I've learned from my reading is that the experience can differ vastly from person to person.  Some sail right through and others hit lots of bumps along the way.

Updose #2, a Hive and a Lost Tooth

With the skin issues we had after the last updose, I decided it would be best to ask Chloe's doctor whether or not we should double her dose at this appointment.  He was very willing to baby step but also said that this isn't as concerning as it would be if she had not had skin issues all her life.  So he gave us a solution that is double the strength (as planned) but instructed us to begin with a smaller dose then usual and work up to the full dose in a few days. I was happy we had a good plan and that he addressed my concerns.


Little Bumps Along the Way (Literally)

It's been good, but not perfect. I've mentioned in a previous post that we watch for any little symptom because anaphylaxis can happen quickly.  There's also more common symptoms with kids on OIT that aren't anything more than that - simply a symptom.

Updose #1

Today was Chloe's first updose appointment.  Basically, that means she went in to take the first dose of her new solution, which contains more peanut flour then what she's been taking.  We will take this bottle for two weeks and get another solution with more peanut flour next time.  Make sense?

So today we doubled!  Now, we are still talking about a tiny fraction of a peanut.  I will refrain from putting out exact numbers so someone doesn't decide to try this at home.  I can't imagine someone trying to do that but just to be safe I'm not going to post a how to manual.

Week 1 Update

Today marks the beginning of week two on OIT so we have one full week under our belt.  I have to say that it seemed like a long week.  We have dosed about the same time every day with no issues to report at all!  Chloe takes it with no complaint, but this solution doesn't have a lot of peanut flour in it.  Since things have been going so well, I am keeping it very routine.  The observation period is probably the most annoying part for Chloe.  The frequency of my probing questions - are you itching, do you feel fine, notice anything strange - is apparently annoying.  I am trying to be less verbal and let her forget about it, but I still watch her like a hawk though.  Her eczema has been flaring slightly on her neck so I make a mental note of what it looks like before we dose so that I don't freak and think it's a hive.  It's getting easier not to question her as the days add up with no issues.

Feeling so thankful that it is as boring as we had hoped so far!  First updose happens next week! 

I also wanted to share a video that gives a little insight as to why a family like ours would choose OIT.  The first couple of minutes show what life is like living with a food allergy and all the fears that go along with it.  While this video doesn't get into OIT, which can be somewhat of a polarizing issue among food allergy families, it does show that there is hope.  Even when Chloe completes OIT she will still be allergic and must carry an Epipen. 





OIT Begins! Day 1





So months of reading, discussing and praying culminate today as we begin.  We aren't talking about it anymore, we are doing it!  We are ready!  Well, I will say that Chloe is ready because as a Mom I am a little nervous and anxious.  Not about day one as much as how life is going to change.  We have to plan life around the peanut dose, observe a rest period and hopefully minimize the amount of illness so as not to interfere with this therapy.  Also, you never know if/when they can have difficulty with the dose or even a reaction.  Is it just a sore throat she is complaining of or is her throat closing...yeah, that type of thing worries me. The payoff is worth it though!

Tree Nut Challenge Day

The doctor assured me when we scheduled the tree nut challenge that he fully expects Chloe to pass this because she showed no skin reaction and the IgE levels were so low for these nuts.  Knowing all this, I was surprised how much anxiety kicked in for me this morning.  I think the nerves had more to do with whether or not Chloe would cooperatively eat nuts.  NUTS!  We have avoided these with a passion for as long as she can remember.  The girl prompts me to read packages to make sure there aren't nuts in things that she eats on a regular basis.  She has been so responsible with her allergy so I didn't know what to expect when we presented her with nuts.  Not to mention she is terrible at taking medicine (gag reflex).  The beginning doses start with a liquid in a syringe.  She's also so picky and hates to try new things.

Good news, Test Results and Confusion

The doctor called today with good news!  Chloe's IgE level for peanuts is now a 37 which is down from a level of 59.4 that was tested two years ago and a level of 69 a year prior to that.  This is good news because she is now classified as a Level 4 rather than a Level 5.  My first thought is perhaps she is outgrowing this allergy, but who knows? But my immediate question to the doctor was "does this mean that OIT carries less risk?" and his answer was yes!  Don't get me wrong, a level 4 means that she can still have serious reactions but from what I understand a level 4 is a little less likely to react that a level 5.  With OIT being such a scary thing for a mom to volunteer her child to do, a little hope feels like a huge thing!  Her component test that he ordered, which would give more information, was not done for some reason.  But we are going on without having her stuck again.

Making a Decision

Food allergies suck! There is no polite way to say it. One would think that life gets easier as the child gets older, but it's really quite the opposite.  We have been dealing with Chloe's peanut allergy since she was 18 months old.  Constant control of her environment has kept the risks to a minimum.  Those who know me in real life, know that I am not a risk taker and tend to be somewhat overprotective of my children.  Well, add on a life threatening food allergy and I'd just like to keep her in a bubble.  You see, it's such a strange way of life.