Allergy Mom: Answering the big questions about OIT
Posted July 7, 2014
This week, Elias and I will venture to Dr. Nash’s office bright and early for our updose to 25 mg of peanut flour.
About a month ago, we were up to 75 mg of peanut flour daily. Then Elias got sick – twice. So, we had to down dose significantly. It’s been pretty disappointing to be back down to 12 mg for the last couple of weeks. But, it’s a marathon, not a race.
With the sickness and dosing changes, I have far more blog fodder than I wanted and I’ll be sure to tell those stories soon. For today, I wanted to give a little background. To step back and tell our OIT story from back in the beginning. Be prepared! This will be long!
Peanut oral immunotherapy, a treatment aimed at desensitizing a child to peanuts, has integrated itself into our daily routine. Breakfast. The daily dose battle. (Force-feeding a two-year-old is just lovely.) Quiet, indoor play for the two-hour observation period. And without any major reactions to note, I’ve found myself pretty comfortable with things. Of course, the moment a hive pops up or a cough comes out I will spiral into panic. For now, I am confident and pretty relaxed about it.
This was not always the case. From the moment we received Elias’ peanut allergy diagnosis my mind went into overdrive. I thought of all the times we had put him unknowingly in serious danger. And I dove into labels and research, trying to ensure we were keeping him as safe as possible.
When I first read about OIT, glued to new stories and the personal blogs of others in the treatment, my heart rate would increase. There was anxiety there. Could I possibly feed my son something that could kill him? Every day? How would I handle reactions? How would I ever sleep at night? How could I have peanut in my home again? How would I explain to family that we were considering this experimental treatment?
Right on cue, the Discovery Channel released their powerful documentary about food allergies. I watched and cried. The stories were terrifying. And this was our reality now. But it ended with hope, mentioning the treatments on the horizon.
I decided we had to do something. So, I scheduled a consultation with Dr. Nash, thankful that he was local. I had my list of questions ready to go. I also reached out to other parents that were in OIT via the Private Practice OIT Facebook group.
They were so willing to talk with us. When my husband was skeptical, more than one mom offered their husbands to mine for intervention. There was a shared passion to save our children. And to save some of our sanity, too. I’d argue no one researches better than food allergy moms, so I put trust in their opinions along with my own findings.
The decision for me was an easy one. Rusty took a little more convincing. And as we prepared for our first appointment, I was petrified. But I was wrapped in support from the other parents. We went in and got started. And I’m so very, very, very thankful for this OIT blessing.
For those who are new to the idea of OIT or considering it for their family, I will try my best to recap my questions and the answers I gathered during our research phase. Please note that I’m not a doctor, and I’m not an expert. The information here is based on my notes and food-allergy-obsessive brain. You should always do your own research and talk to your doctor.
What does OIT look like? How does it work?
You slowly introduce your allergen (in our case, peanut) to the patient in micro amounts over a period of time. (Different doctors follow different protocols. Ours will take at least two years. Some are desensitizing in as little as six months.) You retrain your body to accept the allergen, desensitizing you. You’d then need to continue consuming the allergen for forever, to keep your newly trained body accepting of the allergen. On the first day, we started with 0.1 mg of peanut flour mixed in with applesauce. After observing for 15 minutes, another microscopic amount is given, escalating to either 3 mg or 6 mg at the end of that first day. You come back the second day and consume the amount you ended with on day one to be sure the body tolerates it.
Then, if all is well, you go home with two weeks worth of that amount of peanut flour for daily dosing at home. You keep your emergency items handy, observe a two hour rest/observation period after each one daily dose. You handle any reaction as you would any other accidental reaction. Repeat the next day and the next, until it’s time for your two-week updose.
After a year (barring sickness or travel that changes your schedule), you are on a maintenance dose for a year. During maintenance, you go monthly for an in-office dose. After the end of your maintenance year, you take a challenge equivalent to 24-peanuts-worth of peanut flour. Then, you’re considered an OIT graduate. (And, from a mom’s perspective, OIT looks like terror, but hope. You are still anxious and petrified and wondering how on earth you will manage doing this. But you do it. Because it’s what can save your child.)
So, OIT is not FDA approved. Why not? When will it be?
OIT is showing promising results in the various trials across the country. And the allergists that are offering it via private practice are seeing excellent results, too. Dr. Nash told us that it has about an 85 percent success rate – if not higher. It’s not FDA-approved because it’s food that we’re already consuming and is readily available. So, there’s nothing to approve. Various allergists are conducting this privately via different protocols set forth in trials. What would receive FDA approval (and make someone a lot of money) is something like the peanut patch (also in trials) or some kind of treatment that could be developed and produced, tested and distributed. So focus is placed there with research and development. Meanwhile, we know immunotherapy works (think: allergy shots) and we can retrain our bodies in the same manner with the allergen itself which is, of course, totally available. There may be another option for treatment in the years ahead, but we didn’t want to wait.
Will insurance cover it?
In our case, insurance does cover immunotherapy. It then states: excluding oral immunotherapy. With it so plainly written in black and white, I knew we weren’t going to have a chance of coverage. Dr. Nash doesn’t file with insurance for OIT. We had a long, complicated talk about that which boiled down to the following (put very simply): Some other OIT practices are filing with insurance as food challenges. Dr. Nash doesn’t feel comfortable doing so as it’s not truly what he considers a food challenge. I’ve read in the Facebook groups that other doctors are filing as more advanced office visits and things are being covered.
Do I wish insurance would cover it? Sure. But I don’t want Dr. Nash to file it under an insurance code he doesn’t feel is honest and accurate. And I certainly don’t want insurance coming back to me years from now asking to be paid back for something they determined wasn’t filed accurately. There’s a lot of talk about this with other OIT patients, and it’s kind of a touchy subject.
Personally, if our allergist doesn’t feel comfortable billing to insurance, I respect that. Our coverage makes it clear that it’s not covered. So, we find a way to afford it. I’d pay anything for OIT, honestly. I pray that insurance companies come around on this in the years ahead so that others can benefit from OIT.
After OIT is complete, then what? Are we still considering allergic? What does life look like then?
Our goal is to be desensitized to the peanut. I’m told that after our two years of OIT, if successful, we can incorporate peanuts back into our diets and home. He should be able to tolerate them. It will be as if the allergy never existed. This blows my mind, and I’m not sure that I’ll ever want to have peanut butter and jelly sandwiches here (though I would love a big pack of Reese's Easter eggs).
What I do want is protection for Elias. Birthday parties, elementary school, parks and safe Halloweens. I don’t want to send him out into the world with this allergy. And, after OIT, I can send him out with peace of mind and protection. Some OIT doctors strive to make their patients ‘bite proof’, meaning that a child could accidentally encounter peanut and tolerate it. Others are going further with larger finishing maintenance doses.
Bloodwork to check his allergy levels was conducted at the onset of OIT and will be done throughout. Seeing that number come down will be an indication that his body is beating this allergy, but it may never go down to zero. I think that how you proceed after OIT probably varies for each family. And, time will tell how comfortable we feel two years from now. I do know that we will always carry our epinephrine and Benadryl.
We will always inform those caring for Elias and in his life that he has a peanut allergy. I don’t want anyone to let their guard down around him. So, I always want his file at the pediatrician and elementary school to be marked peanut allergy. I’ll probably have more to say here as time goes on.
Who is a good candidate for peanut OIT?
According to our allergist, pretty much anyone. There are two things that would make you not a good candidate: uncontrolled asthma patients and those with a condition known as EoE (eosinophiic esophagitis). You’d want to have your child’s asthma well controlled before introducing their allergen to the mix.
Thankfully, we haven’t seen asthma symptoms, but we are on a good environmental allergy regimen with daily meds and occasionally Nasonex. EoE is a condition of the esophagus that I won’t pretend to try to explain. But, from my understanding, it’s a pretty obvious condition and if your child showed signs you would need to stop OIT.
Does age matter?
I struggled with this one. Dr. Nash believes that starting young is better, as you can introduce the allergen as the child’s immune system is continuing to develop. There have been studies, he said, that showed greater results at younger ages. I looked into the trials underway and many were with other children, and some with little ones even younger than Elias.
From what I’ve observed, a majority of OIT private practice doctors require a child to be around five or older. I panicked over this as other parents said that the child needed to be able to voice their symptoms and what they were feeling. We wouldn’t have that with a two-year-old. But, we would be able to go to kindergarten with OIT completed. How amazing that would be!
We were assured that if there was a serious reaction taking place, it’d be obvious to us. We wouldn’t need Elias to say anything to us. We’d see it and we’d respond with the appropriate treatment. Just like any accidental reaction. Rusty and I decided that the benefits with age outweighed the risks. So, we went for it.
Why don’t more allergists offer OIT?
With life-threatening food allergies on the rise at an alarming risk, it was perplexing to me that more allergists didn’t mention or offer OIT. But, I think it’s probably because it’s not an easy thing to offer. You have to somehow have experience with the various protocols and be willing to invest the time and energy (and risk) into offering the treatment. So many allergists are making good money just handing out epiphenphrine and preaching avoidance.
In my mind, it takes a passionate person to see that more is needed to help those suffering with food allergies, and to step out of their comfort zone and offer OIT. But from what I’m observing, slowly (oh so slowly), more are starting to offer OIT. I hope it becomes widely available to those who want to give it a try. The Peanut Anaphylaxis Cure Facebook group started by a dedicated mom of a former OIT patient of Dr. Nash’s is a wonderful resource. She’s gathered a list of board-certified allergists that offer OIT and nurtured a really, really supportive group of allergy-parents to help as you navigate this arena.
What does your pediatrician think?
I was nervous about this. I totally 100 percent respect and trust our pediatrician. At Elias’s two-year-old well check (with our OIT start date the following month), I asked Dr. Willey for her thoughts about OIT. She was familiar and supportive. She said she even had another patient (younger than Elias) who had been desensitized to peanut. She reassured us that immunotherapy is not anything new, and it works. And, if we were willing to give it a go, she was behind us 100 percent. Phew!
We’ve since been into the office for a few sick visits for both Elias and Asher, and we’ve seen other doctors in the practice. Each one has been very familiar with OIT, and again, supportive. They’ve asked about how it’s going and made me feel like I’m definitely doing the right thing.
I’m sure there are a thousand other questions I could write about. But these should cover the biggies. It’s not an easy decision because it’s pretty scary. But to me, the alternative was scarier. It’s a personal decision for sure.
What questions do you have? I had so many moms that answered my questions and helped me as we considered our options. They’ve also supported me since starting OIT. I want to be that support for others. If you have questions or just need to chat with a food allergy mom who "gets it," please feel free to reach out here (in comments), on Facebook or via my blog.
Kira is the mom of two boys in Raleigh and owner of Krobe Interactive. She is writing regularly about her son's peanut allergy and his treatment.