Sosi’s story about Oral Immunotherapy (OIT) for peanut allergy
The receptionist is cheery and there is a bustle of academic activity that makes me feel like we are in the right place to start our Oral Immunotherapy journey.
The waiting room has a quaint, clinical feeling to it. Gray walls, the colour of a deep slate clash with the bright floor-mat. There are books, toys, and a really old play-phone all sprawled onto the floor. The pattern of the toys leads me to believe that they were each left immediately when the child, who selected them, was summoned to the outlying rooms. This waiting room is really quiet, considering the amount of people in here. There are two large flat screen televisions simultaneously singing a familiar background tune. I cannot believe that those ‘pups on a roll’ and their chipper theme song are actually calming my nerves a bit.
Doctors and nurses are whipping through, calling patients’ names while cradling their laptops filled with our potential plans to freedom.
A pre-teen boy sits to our left, his arm littered with the familiar pen marks labeling his suspected allergens. I am happy he is sitting snuggly between his parents. Their faces are trying to hide fear with the uncontrollable need to fake optimism, even though I am sure, they know the odds are against them. As we sit waiting for our turn, I witness those bumps raise their dislike for the oily substances disturbing their safe existence. There is one red bump in particular that is really lighting up, I wonder what the scrawls on that poor arm stand for. I can see the parents alarmed faces and I absorb their worry, all the way across this room.
“Sophia?” – It’s our turn.
As soon as we enter the next room, I notice how much brighter it is in here. There are lovely large windows that attempt to combat the continued gray colour scheme. I detect the vials of allergy serums, row after row, there must be 50 or more there. How can there be so many different allergies? I sense Sosi eyeing up the rows of serums as she quickly glues herself to my leg.
I peel her off and gently negotiate my eldest to sit on my lap while the lovely nurse explains how the skin testing will work. The process is the same. Clean off the arm with an alcohol wipe, take a standard black pen and mark four letters on her arms.
C = Control
I can tell by Sosi’s stiff body language that she is not interested in these itchy red bumps today. Guaranteed her negative reaction is directly linked to last week when our local allergist ordered blood-work. We agreed to check her numbers for peanut and milk allergy as her skin test for milk went way down (that is, her measurements were much lower). The blood-work was a traumatic experience, to say the least.
However, those blood tests revealed that Sosi is indeed eligible for the OIT and now here we are. Sosi is wriggling and protesting the scratches which she has never done before. It takes two attempts and some really calm reassuring words from her Dad and a big bear hug from Mom, but we get it done.
We thank the nurse for her patience as we are whisked to another room just across the building. We sit here for only a few moments to wait for the paediatric allergist. While we wait, the presence of the peanut and milk allergen scratched into Sosi’s arm are evidently not a welcome presence.
Dr. G comes in and greets us with a knowing smile and strong handshake. He tries to say hello to Sophia, but she is not feeling too cheerful at the moment. I glance down at her arms, and it is no wonder. She tells me, “Mommy, my arms are itchy!” The fact once again becomes indisputable as those bumps are more pronounced each time I sneak a peek.
We begin a ping pong exchange of questions and answers while trying to contain the energy of two toddlers inside this box of an office. I express my worries and hopes for possible solutions that will support our vision for Sophia’s life of living with food allergies. We are also reminded that this treatment is not covered by OHIP and even though in our province medication for children is free, this is not. The pricetag is steep but our family considers it well worth it.
This is what I have learned so far. OIT stands for Oral Immunotherapy. OIT is the process of slowly introducing a known allergen into our daughter’s system over a long period of time. In our case, it will take 6+months of visiting the allergist clinic every other week for 12 sessions, so 24 weeks, approximately 6 months. It may take longer considering Canadian weather and road conditions and the fact that each visit Sosi needs to feel completely healthy, no colds or coughs since we need to make sure her lungs are clear for monitoring during the suspension tests.
The suspensions are Sosi’s medicated and precisely measured peanut allergen doses. She will have a certain amount at each visit and then continue on as per Dr. M’s recommendation. We will know more about the specifics after we complete one more set of blood-work (this time we have discovered a lotion that numbs the skin if applied 30 minutes before the appointment), we are really hoping this helps.
Next steps, we have completed an online application after watching a documentary that lightly touches on the idea of OIT. We are now waiting for our call back to book a 2-hour counselling session at the Paediatric Allergist’s office. It is mandatory that both parents attend and it best to leave the child at home unless they are over the age of 5, GDad and Nanny to the babysitting rescue!
As an allergy mom, I assure you that I will keep you posted on our progress.
The names of those involved in the paediatric clinic etc. have been changed in this post, and will be in future posts, privacy and all that.
IF you live in Ontario, you know that for at least the past 5 months, the weather has been brutal. I am talking school closures, ice storms, insane winds, and loads of snow – every Wednesday. You may be wondering how I know these lovely winter weather days occurred on the ever so elegantly termed, “hump day?” Easy, our initial Oral Immunotherapy dose date was set for a Wednesday way back in November, and we did not actually start until February! Now, I can’t totally blame the weather since a few Wednesdays we were dealing with fevers, projectile vomiting, and a few super phlegmy bouts of colds. Is it Spring yet?!
What to expect at your First Dosing Appointment?
At our first dosing appointment we were given a very thorough explanation regarding what we could experience that day, and moving forward. We brought our epi-pens, Rupall (antihistamine), freezer bag, puffer and aerochamber, anddddd my bag of nerves. It was terrifying listening to our pediatric allergist describe all the possible side-effects, both minor and severe. We also practiced administering the epi-pen on ourselves, you know, blue to the sky, orange to the thigh? Just in case a serious situation presents itself while we continue to dose at home. We reviewed lip swelling, itchy throat, upset stomach, hives, and other possible reactions to the dose. My heart was so nervous at that point, I could actually hear (and count) the beats whizzing through my ears.
What exactly is a Peanut Suspension?
The peanut suspension consists of peanut powder, combined with a liquid, creating a consistency similar to that of any liquid medication. The suspension is mixed by a pharmacist as the amounts are so low in the beginning of the treatment. In our case, Sosi started with 1/1000 of a peanut as her dose. It equated to 0.5ML of the solution, released under her tongue, and held for 30 seconds before swallowing. Two weeks later, we returned to increase to 1/500th of a peanut, and now we are working on 1/250th of a peanut.
So What’s Next?
It will take months for us to complete Sosi’s Oral Immunotherapy. Our pediatric allergist stressed that this process takes a long time, and there is no rush. I agree, we are totally on board to proceed slowly and safely. That big ‘ole turtle wins the race anyways right?
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I also often post in my Instagram stories about our daily dosing if you would like to see what a suspension looks like.
I have been procrastinating writing this post. I have some serious anxiety happening since we have made the transition from suspension to actual peanuts. My heart pounds and my hands shake every damn morning when I give her the peanut dose. We are up to a 1/4 of an actual peanut. I find feeding Sosi her allergen terrifying. After each dose, I go through our morning routine but it is like a 2 hour fuzz in my day. These two hours I try not to sit and stare at Sosi and project my worry onto her. The last thing I want is for her to start fearing peanuts after we have come so far. Sosi understands that peanuts and milk can make her, “very sick” or “itchy” but we have kept the true severity of her allergy to ourselves, for obvious reasons.
Each dose is carefully weighted, by me, and then stored up high away out of reach. Her dosing schedule increases every two weeks, so just when I am feeling somewhat comfortable with a dose, we increase it.
I think my recently sparked anxious feelings started when Sosi had a reaction during her initial introduction to an actual peanut at the doctor’s office. Thank goodness it happened there because I likely would have melted into a pile of mush at home. About 10 minutes into her dosing, Sosi’s top lip started to swell in the middle. It looked almost like a tiny bee sting but it didn’t get any larger than the size of a dime. It totally freaked me out though because she hadn’t had any reactions to the suspensions. We alerted the nurses who quickly grabbed the doctor to come in for a quick check. Apparently this type of reaction is quite common if there is any type of split in the skin on the lips (which there was). It is similar to the reaction caused by the skin tests. After about 15 minutes the lip bump disappeared and Sosi was actually none the wiser. She didn’t even mention the lip but did ask why I was staring at her without blinking – lol!
So continuing on with our journey, we had a successful up-dose at the paediatric allergists office this past week. We up-dosed to 1/4 of a peanut and all was well, I think her one cheek looked a little flushed but the office was a little warm, so nothing really notable.
Fast forward to yesterday morning where Sosi had a reaction to her peanut dose. It was considered minor and it did not require medicinal intervention but none the less it has really thrown me off. It took me a long time to fall asleep last night because I was so worried about this mornings up-dose. Right now we are having a chill morning in bed watching Netflix while I continue to offer her food in hopes that this will stop a repeat of yesterday.
My concern was about a weird reaction that Sophia had yesterday morning about 20 minutes after her peanut. She started spitting, so we went to the sink where she continued spitting for about a minute and then started crying. Usually she spits before she barfs, so I asked her if she was going to be sick and she said “no”. Then we washed her hands and wiped her face, she started to cry harder and said her stomach hurt. I thought maybe she was upset because I was clearly not hiding my worry at all by this point. I raced her outside for a quick change of scenery where we looked at the pool and talked about the clouds and whether there would be rain or not. Thankfully, she didn’t mention anything once we had cooled off. She did not experience any other issues or symptoms during the day. It was just such an unexpected reaction since she had already had three days at our current dose without any reactions.
Thankfully Sosi’s doctors emailed me back very fast last night (yup on a Saturday) since I just could not get the episode out of my mind. It was thought to be a sort of oral symptom with nausea and to continue with Sophia’s current dose. So what did I learn from this situation? I need to make sure Sosi has a full stomach before and during her dose. Yesterday morning she was not that hungry so she opted for a banana and a granola bar. Each morning she does usually eat more items like toast, SosiCakes, muffins, and maybe a smoothie as part of the peanut dose. So moving forward, we will make sure to fill her belly up with each dose. Time will tell if this keeps her nausea under control, I really hope it does. We also have her antihistamine on hand and of course her two epi-pens in case we need to medicate her at any time.
Currently we are in the last third of her treatment plan, so we will continue to push forward, under doctor supervision of course. Making it through today’s dose and the two hour mandatory quiet period,. She was content with no visible signs of an upset stomach. I am really hoping for no more reactions but feel it is important to write about what we have experienced for those considering OIT as an option.
I am now off to read OIT articles, bake muffins, and enjoy the rest of the day with my little fam jam.
A few weeks ago, a lot happened within a 5 day period of time. Starting us off was Sosi’s yearly skin test with her regular allergist. The results were similar to last year, which was disappointing. I try not to get my hopes up around those little red blotches, but it is hard not to hope. Sosi’s skin test readings were 5mm for milk and 11mm for peanuts. These numbers indicated a need for blood-work to help us decide the next best steps for continuing the milk ladder. So skin scratch test and blood-work all in one day, no fun.
After disheartening skin test results, a lip reaction, and a new school schedule with new situations involving trusting new adults to keep Sosi Safe, this food allergy mama is tired, and needing to slow down.-SosiSafe
Since switching to actual peanuts, Sosi has reacted to some doses. The reactions happen fast, with no real warning, which makes it really hard for me to stay calm. Hearing Sosi say, “Mama, my lip is itchy and puffy,” just hollows my heart and drops a quick punch right into the pit my stomach. Watching your little girl’s lip go from, “normal,” to swollen is alarming, even when I know the facts. Her lip reactions are due to little cuts on the skin. These cuts often occur in younger Oral Immunotherapy patients as the winter months roll in, and lips start to crack. Thankfully this type of reaction is equivalent to a skin prick test, which is not systemic.
OIT Safety Guidelines
Something important to note is the strict rules surrounding each dose. Sosi is not allowed to be physically active, or elevate her heart rate for one hour before her dose, as well as two hours after. As you can imagine, this requires some creative daily scheduling and planning to occupy this busy toddler without relying solely on technology. Baths are also a no since the body temperature increases which could cause a reaction, so another activity we have to carefully factor in each day.
I prefer to up-dose in the morning because the rest hour before the dose has already been honoured. However that leaves us two hours after, which is a tight squeeze before school starts in the morning.
Next steps for Oral Immunotherapy (OIT) Up-dosing?
So, where do we go from here with Sosi’s Oral Immunotherapy (OIT) Up-dosing ? Thankfully our allergists are all very understanding and openly accept our plans to pause the up-dosing. We are two appointments shy of completing the daily goal of 2.0 grams of peanut. Currently Sosi’s daily dose is 0.50 grams of peanut (which is roughly half of a peanut). It really is a large chunk of peanut, and we are thankful to have come this far over the past 12 months.
Even though we are taking a break, I completely acknowledge how far Sosi has come. We lived in fear of a crumb of peanut, and now we go to public places and I only insist on complete strangers using our hand wipes 50% of the time.