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  This dose very quickly sent him from happily playing to acting unhappy and withdrawn.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.  

Initial Consultation

Thursday (July 25th) was our first meeting with Dr. M.  It took us longer to get there than we expected, so we literally strolled in at 5 minutes after our 11am appointment time.  I was a wreck because I hate being late after years of training by my excessively early father (a meal with his family may be scheduled for Noon, but if you're not there by 11:15, you'll get a phone call asking your whereabouts).  Thankfully, no one in the office seemed to notice or care much about our 5 minute tardiness.  I'd say it could have been worse, considering it's a 4+ hour trip with a 4-year-old.  There were many unforeseen bathroom breaks, and believe me, we planned for a few!

The meeting with the doctor went well.  We talked about Sean's history of food allergies, and although our main purpose for the trip was to discuss OIT (desensitization) for his peanut allergy, we talked in detail about his egg allergy.  I'm really glad we did, because I've really wanted to address it further, but our regular allergist is very black-and-white on the issue, and recommends absolute avoidance for pretty much everything.  However, Sean's most recent RAST for egg was only 0.46 and they consider anything below 0.35 insignificant.  So it was really low.  Dr. M. said he was quite certain that Sean could tolerate extensively baked egg, and recommended we try it at home.  He defined "extensively baked egg" as egg that is baked at 350 degrees or higher for at least 30 minutes, so maybe we'll start with something like a cake.  If he tolerates that with no signs of reaction, we are to continue feeding him something with extensively baked egg a few times a week.  This exposure will help him to naturally outgrow his egg allergy faster than complete avoidance.  The doctor only made this recommendation to us because his RAST number was so low and because he had not experienced a reaction since he was two years old.  I don't recommend trying this on your own, as every person's food allergy situation is unique and will require professional advice.  In our case, if he tolerates extensively baked egg for several weeks, then we may begin to incorporate forms of eggs that are less baked, either at cooler temperatures than 350 degrees or for less than 30 minutes.  If he tolerates that well, then hopefully we can eventually get to the types of eggs where the allergy-causing proteins are still intact, such as scrambled eggs and French toast.  Dr. M. was quite confident that he would eventually outgrow the egg allergy, which would be huge. 

Then came the OIT talk.  I had already been reading a lot about the protocols used for this type of treatment, so in general, I knew what to expect.  There is an initial desensitization day that lasts around 7 to 8 hours in the office in which Sean will be fed minuscule amounts of peanut in a solution form every 15 minutes until he begins to show signs of a reaction.  At that point, we will stop and his highest tolerated dose before the reaction will be our "take home" dose that we will administer to him twice daily at home.  He will not be allowed to "exercise" for 2 to 4 hours his dose, which might be tricky because their definition of "exercise" is just regular play for him.  He is just an incredibly high-strung child, so it might be a challenge to keep him still for so long each day.  After his evening dose, he is not allowed to sleep for one hour, and I'm certain I'll still be a paranoid wreck and want to watch him sleep just in case he should develop any breathing difficulty.  

One of the things that stuck with me the most from the visit was when the doctor said, "He will have a reaction."  Logically, I knew that, but I had tried not to think about it.  It doesn't mean he'll have an anaphylactic reaction, but of course that is a fear in my mind.  We will of course stay armed with epinephrine and hope that his reactions are always mild.  

The closer we get to Tuesday, the more nervous I become.  I had difficulty sleeping last night because I was stewing over whether or not I have made the correct decision for my son.  I never want to do anything that may cause more harm than good, and I would never even consider this if I didn't trust the doctors, the research, and my instincts.  I feel like if we do nothing, we're just sitting around waiting for him to have a potentially severe reaction.  But if we do this, I feel like we're at least giving him a fighting chance against accidental ingestion.  And if we're really lucky, maybe someday he'll be able to incorporate peanuts in his diet like a normal person.  I want nothing but the best for my little man, and I just hope with all my heart that this is the best decision.

Why I Took the Plunge

I've been reading about OIT for food allergies for a while now, and it always seemed like something we would maybe do in the distant future.  The doctors who offer it are few and far between, so we would likely have to travel quite a distance for the treatment. Some doctors will not even accept children under 5 years old for OIT.  I questioned the logistics of traveling to a doctor's office hours away on a frequent basis for dose increases every week or two.  My work schedule varies dramatically from one week to the next and I never have the same day off two weeks in a row.  We have two younger children to care for also, a 2-year-old and our youngest, who will be 12 weeks old tomorrow.  The timing just has not seemed right.

But the more I thought about it, the more I realized there would never be a better time.  In one year, Sean will be starting kindergarten.  That brings up many concerns on its own.  What if he has a severe allergic reaction at school?  What if he has to sit alone to eat?  What if the other kids are mean to him.  Bullying because of food allergies is horrific and is on the rise.  Just do an internet search for it and you will be horrified if you are a parent, and especially if you are a parent of a child with food allergies.  But beyond those concerns were the concerns of how we could even work it out.  Education is highly important to me, and I do not want him to be accustomed to frequently missing school.  This year, he will only be in preschool three days a week, which leaves Tuesdays and Thursdays open for possible appointments.  And it just so happens that my week day off work is always either a Tuesday or a Thursday.  So schedule-wise, it made sense to start sooner.

The other reason I felt a sense of urgency to begin is related to my own health concerns.  I gave birth to our youngest son Nolan on May 1st of this year.  Five days later, I began suffering from very troublesome neurological symptoms.  I've been through many, many tests since then, and for the most part everything has come back normal.  Right now, I'm being evaluated for such illnesses as multiple sclerosis and Lyme disease.  The prospect of potentially having a disease that may physically debilitate me has given me a new sense of urgency to complete a lot of things that I want to accomplish in my life.  While I realize that multiple sclerosis is generally a slowly progressing illness, this whole experience has reminded me that life is short and there are things I want to get done.  If I died tomorrow, I don't think OIT would be at the top of the priority list for my husband, newly widowed with three small children to care for.  I'm usually in charge of making the medical decisions for our children, and this is something I want strongly for my son.  

And so I made the decision to go for it.  It felt like it was on an impulsive whim, and it sort of was, but I had been reading and planning it for a while now.  I did not expect the initial appointment to happen so quickly, either.  I called on a Monday and the appointment was scheduled for Thursday.  Amazing!  I can't wait to get started.  I'm nervous, scared, excited, but most of all... Hopeful.  

What is OIT (oral immunotherapy treatment) for Food Allergies?

I first learned of OIT (oral immunotherapy) for food allergies after joining some online groups for parents of food-allergic children.  It is a physician-supervised treatment in which the patient takes small amounts of his or her allergen orally, beginning with minuscule quantities and gradually increasing to larger amounts over time.  It works on the basis that the immune system, which is falsely attacking food proteins as foreign invaders, can be desensitized over time.  In these online groups, I saw pictures and stories of children eating handfuls of peanuts after previously experiencing life-threatening allergic reactions from ingesting invisible amounts of peanut.  

I was intrigued, but scared to say the least.  So far, Sean has never had a severe reaction.  If we just left him alone, perhaps he never would.  The thought of feeding him his allergen seemed a bit like playing with fire.  What if I do more harm than good?  But then I remembered what we've already got stacked against us.  Peanut allergy is the leading food allergy related to anaphylaxis.  For those who don't know, anaphylaxis is a severe, life-threatening allergic reaction.  It can be brought on by exposure to a very small, even invisible, amount of an allergen, and can escalate to death within minutes due to the involvement of multiple major body systems.  Initial symptoms may be complaints of itchy or tingly lips, tongue, or throat.  The sufferer will likely begin sounding hoarse, coughing, wheezing, and have difficulty breathing.  Some experience gastrointestinal symptoms such as abdominal pain and cramping, vomiting, and diarrhea.  Hives may erupt on the skin.  Swelling is likely, and is especially noticeable in the face around the mouth and eyes.  This swelling occurs as fluids leak out of the blood vessels and into body tissues.  As a result, the blood pressure drops and may become dangerously low.  The body will try to compensate for the low blood pressure by increasing the heart rate.  For this reason, people who are experience anaphylaxis are often found with low blood pressure and rapid pulse.  However, in about 10% of cases, the blood pressure and pulse will both be low.  If this condition is not corrected quickly with a medication called epinephrine, either in an emergency department or via auto-injectors such as the Epipen or Auvi-Q, the condition can rapidly lead to unconsciousness and death.

As I read about OIT, I found that about 80% of the patients who begin it are successfully treated.  I decided that sitting around doing nothing was just as scary as all the unknowns associated with OIT, so I made the call to set up the appointment.

Assuming Sean is deemed a good candidate for OIT, we will begin with one long day where he is periodically fed extremely small doses of a peanut solution while his vital signs are constantly monitored and he is watched for signs of a reaction.  A dose will be determined for him to continue at home, and we will continue to dose him on our own (with Epipens in hand, I'm sure) until his next appointment.  We will have to make the 3.5 - 4 hour drive every week or two for a dose increase that will be given in the office.  If tolerated, we'll again be sent home to continue the dosing on our own.  This will happen repeatedly over many months and if all goes well, it will end with him being able to eat multiple whole peanuts.  I can't even imagine that at this point!  Because this is a relatively new treatment and is still considered experimental, there is not a lot of information on how long he will have to continue daily maintenance dosing once the treatment is completed.  It may be that he will have to continue eating peanut products on a daily basis for the rest of his life (or a minimum of several years) to maintain his desensitization.  We'll cross that bridge if and when we get there, and I really, really hope we get there!

The Beginning of a Nutty Journey

Our story began in August, 2009.  I decided it was time to officially introduce our son Sean to peanut butter.  He was just over two years old.  I had tried giving him PB&J sandwiches a couple times before, but he didn't really like it and so I hadn't tried to feed it to him in a while.  That day, I wanted some peanut butter for myself and decided to let him have a taste off of the spoon.  It was within minutes that his mouth was surrounded with hives.  Thankfully, his reaction didn't escalate beyond that, as we would have been totally unprepared.  I was able to get him in to visit an allergist for testing within the next week.  

It doesn't really fit in with the main point of this blog, but I feel that I absolutely must share the experience we had with our first allergist visit.  We went for his skin scratch test and not surprisingly, we were told that he was allergic to peanuts.  Much to our surprise, we were told that he was also allergic to milk and wheat.  Our child literally lived on milk and wheat.  I had just talked to his pediatrician at his 2-year checkup about how all I could get him to drink was milk, and the only foods he wanted to eat were cheese and yogurt.  He occasionally ate macaroni and cheese and other noodles and bread/crackers (wheat).  The allergist specifically told us that he did not test allergic to eggs.  So being completely bum-rushed by this information, we didn't know what to feed our poor child.  We were told to completely exclude the milk and wheat, even though he had never shown an obvious reaction to either.  We had to take away his sippy cup full of milk, and it was the strangest feeling ever, because he went through multiple gallons of milk every week.  So not knowing what else to do, we decided to give him eggs for breakfast.  Afterall, the allergist had just specifically stated that he was okay with eggs.  So imagine my surprise when his mouth starts erupting in hives as we watch him eat it.  I stopped him and called the allergist back to double check and clarify that I had not misunderstood.  She confirmed that she had documented him as allergic to only peanuts, milk, and wheat.  I told her that he indeed did just react to eggs, and so she ordered blood tests for all four: peanuts, milk, wheat, and eggs.  We went shopping and bought a bunch of weird foods that we never would have eaten otherwise.  Cheese made of rice?  Eww.  It was disgusting.  But Sean liked it, so that was the important thing.  A week later, the blood tests were in.  He was indeed allergic to peanuts, eggs, and milk.  He did not test allergic to wheat.  I do believe it was a mistake in interpreting the skin test by the allergist.  I'm just glad that his reaction to egg was not more severe.  I'm irritated that she told us the wrong allergies, but had the incident resulted in a life-threatening reaction, I would have been livid.

The terrible thing about food allergies is that you can not predict the severity of a reaction based on previous reactions.  Although his previous reactions were relatively mild, it is expected that future reactions could increase in severity.  We are to treat his allergies as potentially life-threatening, strictly avoid his allergens (even items "processed on shared equipment" with peanuts), and carry Epipens at all times.  Peanut allergy is the #1 food allergy linked to severe allergic reactions leading to death due to anaphylactic shock.  People have accused me of being a paranoid mama-bear.  I just feel that I'm doing what is necessary to keep my son safe.

Fast-forward to December 2012.  Sean had spent almost a year and a half avoiding all traces of dairy, and thankfully, he eventually outgrew that allergy.  The day we got the call that his test indicated that we could reincorporate it freely into his diet was an amazing and joyous day.  It makes cooking a million times easier when you can include milk, cheese, cream cheese, sour cream, etc.  You get the idea.  But the tears started to flow when I imagined us going as a family on a hot Summer day to buy our children ice cream.  It had been heart-breaking for me to imagine not being able to take my little boys to enjoy one of life's simple pleasures due to a food allergy.  Yay for ice cream!  I cried tears of joy... A small victory!

And fast-forward once again to today.  I made the phone call that may very well lead to another victory for us.  Only this one would be a huge victory.  I called the office of Dr. M. in Michigan who came highly recommended to me from other people in online food allergy groups.  Dr. M. has personally dealt with food allergies and is deeply invested in OIT (oral immunotherapy) as a treatment for food allergies (more on that later).  I originally planned to wait until Sean was 5 years old to begin this treatment, but for many reasons (more on those later also), I decided to take the leap sooner.  When I spoke to the woman on the phone, I was absolutely shocked when she told me they had an opening for an appointment this Thursday!  I was looking at my schedule, expecting it to be weeks out before I could see Dr. M.  I think Tom was ready to kill me when I told him we have an appointment in three days!  He had just told me last night that he would leave the "when" and "where" up to me, but I really don't think he expected us to find ourselves in a doctor's office to discuss it this week!  To be honest, I didn't expect it either.

He ought to know by now that I'm the impulsive type.  I do things on a whim... Sometimes, those things happen to be amazing, huge, life-altering things that involve hours worth of driving when we have no plans for baby-sitters and no freaking CLUE what we're in for.  Sometimes, those things end up unbelievably beautiful, and I can only hope this is one of those times.  I want to send my child to school and not worry that he may experience a severe, life-threatening reaction.  I want to send my child to school without having to hide my tears when he asks me why he can't sit with the other children at lunch.  I want him to go to birthday parties where he can enjoy the cake and not have to bring his own "safe" treat so as not to feel entirely left out.  I want to eat at restaurants without feeling like I have to stare at him the whole time, poised to stab him with his Epipen should he experience difficulty breathing.  

Was the lollipop processed on equipment that also processes peanuts?

Let's read the fine print before we buy it!