Our First Day of OIT

Yesterday was our first day of peanut OIT with Sean.  We pretty much got no sleep the night before.  Monday was my first day back to work after maternity leave, and it was a rough day.  I only had one technician out of three who were scheduled, and then I didn't get home until 11pm.  We had to be out of the house by 4am to get to Dr. M's office to begin.  That night, our almost-3-month old baby, Nolan, decided he didn't really want to sleep.  Needless to say, we were feeling quite tired having to get up at 3:30am to run out the door.  During the drive up, I was fine and felt relatively calm.  

When we got to the office, however, I began to panic.  It started when Dr. M. presented us with a consent form to sign, stating that allergic reactions up to and including anaphylaxis may occur as a result of this treatment.  I started getting nervous, but I was still somewhat keeping my cool.  After a bit, he was ready to take his first dose, one milliliter of a grape-flavored liquid containing 2.5 micrograms of peanut flour (equivalent to 1.025 micrograms of peanut protein).  After he swallowed the dose, my body went cold, I broke into cold sweat, my heart began to pound, and I caught myself breathing very rapidly.  I felt like I was in a full-on panic attack, and all I could think about was getting out of there.  And then... Nothing happened.

Sean was given a dose every 15 minutes, and each dose was repeated once before increasing to a new dose which was roughly double the previous one.  I found myself highly nervous each time the dose was set to increase, and somewhat less nervous when he was set to get a repeat of the previous one.  The schedule for the first day included a total of 25 doses, and we were told to assume that he might begin to show mild symptoms of a reaction somewhere in the middle.  We made it through 20 of the doses, and Sean still seemed happy and content.  I was starting to think maybe he could make it through the entire first day protocol without a reaction, or at least I hoped.  We only had 5 doses left.  Could he make it?

Then came dose 21 which consisted of 5mg of peanut flour, equivalent to 2.05mg of peanut protein.  This is still a tiny amount, but it was 2000 times higher than his first dose of the day.  This dose very quickly sent him from happily playing to acting unhappy and withdrawn.  He no longer wanted to talk to the nurse or doctor and no longer wanted to play with his toys.  He climbed onto my lap, started to act a little cranky, and began to hide his face in my neck.  I asked him what was wrong and his response was, "I think they gave me too much."  Tom asked him if he meant too much water, and he said, "No, too much of that grape stuff."  We had a bit of trouble getting him to elaborate why he didn't feel well, but finally got out of him that his belly hurt.  We alerted the doctor and nurse, and that was the end of dosing for our first day.  We would not try to push through any sort of reaction, thank goodness.  My nerves couldn't take anymore.  For several minutes, Sean just sat on my lap clinging to me and didn't want to look at anyone.  I was nervous that the reaction would progress, but Dr. M. was calm, so that helped a bit.  I just hated seeing my little boy in discomfort and knowing that we had caused it by feeding him the very thing he is allergic to.  It's a weird place to be emotionally when I can see the immediate effect of what we're doing, but I have to try to focus on the long-term goal of keeping him safe from accidental peanut ingestion.  If this works really well for us, he may even be able to eat peanuts regularly in his diet someday, but that seems like a distant dream right now.

After he reacted to his dose, a timer was set for 1 hour.  If he felt well at the end of that hour, we could finally go home.  We had been in the office around 7 hours and we were all exhausted.  After several minutes of the tummy ache, Dr. M. offered Sean a pouch of applesauce and said they've found that it really seems to help with the stomach problems.  He managed to eat the whole thing of applesauce, but still acted like he didn't feel great.  Within a few minutes, he was starting to come around.  They brought him some little toys to play with and he really enjoyed them.  He was finally acting like his normal self and playing happily again.  In all, he was probably back to his normal self within 20 minutes, but it felt like an eternity, and my stress was still not over.  I had heard of things like delayed reactions, and couldn't help but continue to think of the worst-case scenario as we drove home.  

Sean's car seat is in the very back of our van and his two brothers' seats are in the middle row.  It makes Sean harder to see from the front.  I rode in the back with him for a while, and then after we stopped to eat, I decided it would be easier to climb back into the front seat.  I knew Sean was exhausted and he went to sleep in the back.  I kept having to check to make sure he was still breathing.  At this point, I was exhausted, stressed, overwhelmed, and had a little emotional breakdown.  All my fears and worries came flowing to the surface and the tears began to flow.  Tom, who is ever the optimist, reminded me of the reasons we chose to do this treatment.  We felt that the benefit of the treatment outweighed the risk of doing it, and the even bigger risks of not doing it.  In his life, it's not a matter of "if" he accidentally eats a peanut, but "when".  And keep in mind that his highest tolerated dose was only 0.41% of one whole peanut.  Less than one half of one percent.  Anymore than that, and he started feeling very ill.  Throughout the course of the entire day, he only consumed roughly 1% of a peanut over approximately 6 hours or so.  It was only a matter of time before he accidentally ate that much or more, and then who knows what might have happened?  I don't even want to think about it.  I consider ourselves very lucky that he hadn't already had a bad reaction.  While we were driving home, my anxiety continued to mount, and I decided to jump into the back and make sure he was okay.  He was sleeping very deeply, which is not surprising after he stayed awake from 4am to 7am on the drive to Michigan, and then after putting his body through a lot of work during the desensitization treatment.  He was drooling on his car seat, and something about the sight of him slumped over drooling made me panic a bit and I shook him awake.  He just looked at me and said with some attitude, "I don't like that."  Just what I needed to hear!  

That night, he insisted that I put him to bed, even though their Daddy usually does it while I stay with baby brother Nolan.  I didn't mind, as I was scared of the thought of him sleeping.  I was afraid that he might have trouble breathing and we wouldn't hear him or know that something was wrong.  I laid and talked to him for a long time as Calvin was falling asleep.  He wanted me to make up some stories, so I told him a story about a little boy who wanted to ride his bicycle, but didn't wear his helmet.  I asked him what he thought happened, and his response was that he got hit by a car and got hurt.  I told him that yes, that could happen and that was something we need to be concerned about, but that this particular time, the little boy (whose name was Sean) was riding along without his helmet on and a bird flew over him and pooped on his head.  Haha!  It made Sean laugh, and I still think it got the point across... It is important to wear your helmet when riding your bicycle.  The next story was about a kitty who was stuck in a tree and a dog found him but couldn't help him, so he got his friend the bird.  The bird called on several of his bird friends and they all flew in a circle holding a sheet and the dog told the kitty that it was safe to jump.  The kitty jumped into the sheet and was lowered safely to the ground by the friendly birds.  The dog and the kitty were best of friends after that.  They were the simplest little stories, but they made Sean smile and laugh, which was just what we both needed after such a long and stressful day.  He asked me repeatedly to stay in his bed with him, and told me several times that I can't go back to work ever.  That was the most heart-breaking, as this is my first week back from maternity leave and I desperately want to stay home with my boys.  If nothing else, it feels good to know he wants his mama to stay home with him.  Eventually, the boys went to sleep and I got some much-needed deep sleep of my own.  I tried not to think of the bottle of peanut liquid in our refrigerator that I would have to begin feeding him twice daily starting the next morning.