If you saw the Chew Chew Mama Facebook page update last night then you know that I have started writing this post dozens of times. I have so much to say about what’s been happening over the past 4 months, but i’m scared that what I am about to share could potentially cause confusion for our family, friends and teachers that interact in our son’s daily life.
So I’d like to start off this post by saying that my son still has a food allergy and is highly allergic peanuts. If he ate a peanut, his life would be in danger. So please continue to keep your nuts to yourself!
If you read my first OIT post, you know that our son is taking part in oral immunotherapy clinical trial (aimed at desensitizing our son to peanuts) at Johns Hopkins Medical Center. This clinical trial is three years long! It is a marathon! It is definitely not a quick fix (nor is it a guaranteed fix) and during the entire trial our son’s world needs to remain nut free. Though we are able to clearly see and understand a lot of the things that are happening, we won’t know all of the answers until the end of the trial.
I can already predict there will still be more questions at the end of the trial, so please understand that if you are lucky enough to be a part of our son’s life and he is lucky enough to be a part of yours…he still needs to be protected.
Every step we take at Johns Hopkins is incredibly controlled by the experts in this field. Our experts, who I am now referring to as real superheroes are Dr. Robert Wood and Kim Mudd, RN, MSN, CCRP. We communicate pretty often. And by often…I mean, that yes, our super doctor has answered his cell phone at 4:45 am to answer questions about what to do when our sweet Cub was wheezing, not from OIT, but from croup. The medical team is there for our son in an instant. They connect with us immediately and I feel incredibly safe, blessed and lucky to have them.
Ok, so now that I said all that…guess what?
All signs are pointing towards oral immunotherapy working for our son. This means that I am equally amazed and nervous all at the same time.
Beginning in October, we started giving our son OIT doses that were so small that they were barely visible to us. We added juice to what looked like maybe a half a grain of salt and prayed that it hadn’t flown out of the cup in the process while we watched our son drink it down. Right from the start, our son has had mild reactions to his doses. I remember thinking that if an amount THIS small was causing eczema all over his torso and “tickles” in his mouth and throat…that there was no way I was going to last in this trial as the doses got higher. But we are more than lasting. In fact, we aren’t turning back. We are amazed at what we are witnessing happening right before our eyes.
So far, we’ve consistently seen eczema flairs and hives from dosing. They’ve caused us concern and worry, but they haven’t ever escalated to a dangerous level. Not once. The hives show up, almost as if to say “hello, something’s happening in here!” and then they vanish just as quickly as they appeared. The most amazing part of this experience is that we see more reactions right after an up dose, but then as the days go on…the reactions start to fade away to none. This tells us that his body is most likely desensitizing. It’s mind blowing! This has pretty much been the theme of our son’s experience of OIT throughout his up doses so far.
I’m not an allergist, so I am not going to give the details of how we are advised to handle these mild reactions, but I will say that we do have a plan in place for how to treat anything and everything that comes up and we are instructed to reach out to our doctor whenever we are concerned. In the beginning, there is no doubt in my mind that I was an annoying, new OIT mom!
In hindsight, I probably called our doctor too much at the start, but this was all new for us…of course I was calling. Dr. Wood answered every time making me feel like our family had his undivided attention and never once complained. I am really not sure how a man as busy as he is pulls this off, but he does! Now that we are four months into OIT, they don’t hear from us too much unless something new comes up.
We travel to Johns Hopkins every 14 to 20 days for our son to up dose. During an up dose appointment, our son gets his vitals taken (weight, height, temperature, blood pressure) and then is brought to a treatment room to get his dose. A dose increase is given mixed in juice initially, but now since we are up to 50 mg of flour, it gets mixed in apple sauce. Once he’s taken the dose we stay for observation to make sure that he is tolerating the new dose safely before they send us home.
During this time, our son has a snack with his baby brother and enjoys being in charge of the remote control to the television in the room. Our son loves that Dr. Wood has Disney Jr. too (watching the TV in photo below and giving a thumbs up)! At the end of an appointment, vitals are taken once more and we are out the door. Our son is not phased at all that we drive about 2 hours to go have some juice (now apple sauce) with Dr. Wood and Mrs. Mudd. He loves to see them and to give Mrs. Mudd hugs, except for on pinch days.
Pinch days. The hardest days of OIT for us so far are the blood work days. Every so often a blood draw is required for the study to see how our son is progressing. I think these days are harder on Chew Chew Mama than the Cub. He seems to bounce back so much faster than I do. He is such an incredibly awesome little man.
I get to see the basic results of the blood draw, but I do not get to see all the allergy numbers and MAN DO I WANT TO SEE THOSE NUMBERS! Our doctors, who are blind in the study, can’t see those numbers either. However, the general blood work up that I am allowed to see…has changed from what it was at baseline before we started OIT. In fact, not one, but six of his blood levels have changed (still in safe range). This news combined with the reactions to the doses I mentioned above tells our family that a positive change is happening! This day was the day that we really let ourselves start to get excited about what this could mean for us in the future if OIT continues to go this well.
When we began our OIT journey, our lives revolved around the doses. We were so nervous that life basically stopped at dose time so it was our only focus. We initially gave the home doses at 3:00 PM each day so that we could STARE at our son each second and feel safe that the dose was over before we put him to bed. During the first two months, I don’t think I ever looked away from him during a dose other than to blink or to look at his baby brother, because yes, i’m a little over protective. Now that I am thinking back on those early days it makes me smile at how much i’ve changed.
Over the course of the last four months, we’ve (i’ve) chilled out A LOT. We aren’t lax at all, but OIT is teaching us so much about how our son’s body reacts to his allergen that it’s given us room in our lives to relax. I realize the sentence that I just wrote would have made absolutely no sense to me (an allergy parent) prior to starting OIT, but I promise it makes sense now. For the first time in 4 years, we are protective and nervous about what’s ahead as our doses continue to increase — but we aren’t scared anymore. There are no words to describe how huge this change is for us.
Our lives don’t stop during OIT anymore. Like any other new routine, we’ve gotten used to OIT and it’s become a normal part of our day. We now give the dose after dinner, so that the Cub can run around a little more. He does get a bath during his dose time. Our bath temperatures are warm (not hot), so we’ve never had temperature cause any sort of a reaction. We’ve also never been warned for this to be too big of a concern. We still enjoy calm activities during a dose, but calm can mean racing cars and digging for worms outside as well as building with blocks or puzzles. Our son is sleeping during the last two hours of his dose. Yes, we check on him more often during dose time — and yes, he’s been perfectly fine!
He’s spending his days being a busy, silly, sweet, 4-year-old little boy. He’s a little itchy, but he doesn’t complain. He just tells me, “Mommy, my arm (lips, head, foot, etc..) is itchy, write that in your book.” He makes me laugh! God made him funny!
We’ve had a few learning bumps along the way. We’ve learned that dosing without a snack is a bad idea. It pretty much increases the amount of hives and “itchies” we see and brings them on much faster. We only made that mistake once!
We’ve learned that walking next to mommy in the food store is not a “calm activity” nor is it the best idea even three hours after a dose. This caused hives which pretty much told us “slow down, he is moving to fast.” So into the cart he went!
We’ve also learned that getting sick and having a fever is not the end of the world. We had heard that we would not be allowed to dose if the Cub got a fever. We tried to avoid that from happening as much as humanly possible, but he’s four and he goes to preschool…enough said, right?
Much to our dismay, one early morning our son called out for me sounding like a honking seal and when I reached him he was coughing, wheezing and incredibly hot! It wasn’t related to his doses at all. He was sick. Our pediatrician told us it was viral and our allergist told us not to dose, and I told him, “I’m scared not to give him his dose now.” And his response was, “I know you are, but it’s going to be ok.” So I complied and guess what? Our son was just fine to resume his next dose a day later. Once you start these doses, the idea of stopping them sends your heart into a panic that the desensitization will weaken. But we are mighty!
So what’s ahead?
Our next appointment is a pinch appointment.
Ugh. It will also raise our son’s dose to just about the level it was when he went into anaphylaxis during his food challenge. I’m a little nervous, but I trust what’s happening and I trust our doctor. I still believe whole-heartedly that this opportunity was an answered prayer and every evening when I open up our son’s dose cups and smell the undeniable, strong scent of peanut in my nut-free house, I smile and offer up a thankful prayer.
Thank you to everyone that has been checking in and praying for us. We appreciate it so much! We believe the prayers are working and we are thankful! Please keep them coming and I promise to post another update in a few months!
Big, big hugs!