First, what is OIT? “OIT” stands for Oral Immunotherapy.
Dr. Sakina Bajowala of Kaneland Allergy, “Oral immunotherapy is a method of inducing your immune system to tolerate a food that it is currently over-reacting to. It involves re-introducing the allergenic food to your system in gradually increasing amounts, with the goal of allowing you to eventually consume the food without experiencing a reaction.”
In other words, a board certified allergist will introduce the food you are allergic to in almost invisible amounts, increasing those amounts over time so you no longer have reactions. The allergist does not want to cause side effects or a reaction so they make sure you are well on your first day, and that you have some food in your stomach before you eat the food. You must also avoid high activity that could increase your body temperature for approximately two hours after you eat the food. Then, at home, you proceed to eat a determined amount of that food once or twice a day according to your doctor’s plan. That’s really all there is to it.
Who found out about this treatment? How do we know it’s real?
Well, when my son became allergic to peanuts at age 4, I could not find a doctor to help him. Our allergist knew researchers at Duke University were trying to come up with a way to “desensitize” children from their food allergies, but they hadn’t released the information that OIT worked or didn’t work yet? If it did work, we could expect to see OIT offered in allergy offices within 5 years.
I called Duke to find out if OIT was working in their studies. They said OIT worked and they would be announcing it to the public soon. In the meantime, the lead researcher, Dr. Burks, agreed to expand his study to Cincinnati Children’s Hospital. Children’s Hospital agreed but required a $2 million donation to implement the study. I started raising money for the hospital but soon after they decided their priorities were cancer and diabetes, not food allergies. They returned the donations and we were left without help for our son. Luckily, I kept in touch with the researchers at Duke and one doctor agreed to open his own private practice allergy office and start treating patients with the same protocol he used in the clinical trial. He made some changes like dropping the dose if the patient experienced any side effects and not increasing the dose until the patient tolerated that amount for 2 weeks without issue. So, in 2010, our family moved to North Carolina for a year for my son to undergo OIT with his Private Practice OIT Allergist.
While my son was in treatment, I kept documenting his progress in my first Facebook group Peanut Anaphylaxis Cure. People asked why we limited the title to peanuts but that’s the food we were working with at the time. OIT works for any food. As for “cure,” OIT fits the medical definition.
Definition of Cure from Medicine Net:
1. To heal, to make well, to restore to good health. 2. A time without recurrence of a disease so that the risk of recurrence is small.
From Dr. Kari Nadeau, one of the nation’s foremost experts in adult and pediatric allergy and asthma, “It’s the only known way, at the current time, to cure someone of their allergies.” She goes on to explain what she means by that, “So, I’m always careful about saying the word ‘cure’ because patients talk about the word ‘cure’, and to them it means, “I can eat whatever I want every day.” But to me, as a scientist and as a physician, when we say ‘cure’, we mean cured for life.”
What’s Private Practice OIT?
As our Facebook support group grew more and more people kept asking about food allergy treatments. It became impossible to focus on OIT treatment like we received in our allergist’s private office. People were confusing his method with clinical studies, which were becoming completely different with all types of accessory drugs being added. So I created a spin-off group called “Private Practice OIT” for those of us IN actual treatment with a private practice allergist.
Soon Private Practice OIT was growing too, and people who were in studies were confused but the fact that they weren’t IN ACTUAL TREATMENT but in a clinical study to research data. For everyone’s sake, I create OIT Trials so members were free to speak about the accessory drugs such as Xolair, probiotics, etc…that were completely unnecessary in private practice.
Not surprisingly our groups kept growing. New members were asking the same questions every few months but for the people who had moved on from the increase phase of treatment and were in the maintenance phase, it became tedious to keep answering. That’s when I decided to create OIT101 for new people who couldn’t decide if they wanted to actually try OIT. And our experienced members from Private Practice OIT would go over and answer their questions if they were so inclined to help.
As you can imagine, our content was accumulating and every time someone asked a question we had to search the group and find the link for them. All this time I had been working on a website pulling information over from Peanut Anaphylaxis Cure, Private Practice OIT, OIT Trials, and OIT 101, as well as creating a Desensitization Directory for the doctors I had added to our OIT Provider List. But I was super busy managing the groups and homeschooling my own children too. Luckily, a few amazingly talented women agreed to be Administrators for our Facebook groups and they became impatient waiting for that website so they surprised me by doing it on the OIT 101 website.
In a span of a few years, I continued to create groups for our members and doctors in Canada, the UK, and Australia. Not only was I interviewing and adding board certified allergists to our OIT Provider List, I was also connecting them to train one another considering OIT is not taught in medical schools. They only had themselves, as they still do actually. With all this work, from counseling members in our Facebook support groups, to helping the doctors, to developing and maintaining the websites, and educating the public who were not in our closed support groups, we needed more help than our volunteers could manage. I was paying for all these hosting bills, tech bills, and ad bills myself. And my son had been fine since 2010.
I had lost so much time with my small children while helping others find help for their children, and paying for it financially as well. Not only that, people were stealing our content and pretending as if they had done the work themselves. They stole our name “OITWorks,” our slogans “OIT Set Me Free,” and even “OIT101” and “Private Practice OIT” to promote their seminars. Rarely did anyone ever give us credit or lead people back to us as the original source. We were doing the work and paying for it in so many ways, and they were making the money.
Alas, we decided to incorporate our efforts to support our cause and protect our work. Members preferred “OIT Works” over “Private Practice OIT” so that was the name we agreed upon for our nonprofit.
Breaking it down:
Our Facebook closed support groups and pages:
Peanut Anaphylaxis Cure, Private Practice OIT, OIT101, OIT Trials, OIT UK, OIT Canada, OIT Australia, Uniquely OIT, OIT 101 – Oral immunotherapy treatment for food allergies, OIT Works, Private Practice OIT Public Group, and several closed and private groups for allergists only.
OIT Works: Nonprofit and administrative correspondence in blog form for our members, doctors, and donors. This site will also host our future media projects.
Unite and support our Private Practice OIT Allergists.
Help interested allergists receive training.
Expand Private Practice OIT offices into more neighborhoods.
Make people aware that OIT is safe, effective and AVAILABLE now!
Fund our OIT breakthroughs in patient care, physician training, infrastructure, technology, and media.
OIT101: Hosts our OIT Provider List of doctors, publications and articles about OIT, family success stories, and basic education of OIT.
OIT Society: Reserved for doctors only. They can fill out forms requesting to join our OIT Provider List, private doctor groups and email list, update their profiles on OIT101, and access training material that has been brought over from our private Facebook and email groups or created for this specific purpose. This private platform contains our OIT Toolbox and Guidelines for members of our OIT Society as well as requirements to stay in a good standing as an OIT Private Practice Provider.
One big OIT happy family?
I would like to think so but that’s not actually true. It started when the leading researchers of the OIT studies decided to explore other options for the advancement of OIT instead of announcing to the allergists and the public that they had conducted all the phases required to prove that OIT was “safe and effective.” Some of those options include a food allergy patch similar to a birth control and stop-smoking patch, an allergy-free peanut protein, a peanut vaccine, herbs, and pre-packaged peanut flour pills. None of which have come close to the success rate of OIT, which is unheard of at 95-100% depending on the study/practice location.
The cost of the pre-packaged pills alone is stated as $5-10k for the first six months and $400/month for life. Stop taking the pills, become allergic again. The company says that it relies on “good housekeeping” practice to keep their product free of cross contamination. So their argument that a compounding pharmacy or doctor’s medicine lab is not “sterile” is silly. Their “good housekeeping” standards are no better than any other food manufacturing company. You will find no food on a compounding pharmacists counter or scale in a physician’s medicine measuring lab. Nevertheless, the pre-packaged pill does nothing a board certified allergist doesn’t already provide. A Private Practice OIT Allergist will not stop the dosing at 1 or 2 peanuts either. They desensitize for all foods as far as the patient can tolerate or wants to consume. The patient is released, SET FREE, from dosing and allowed to incorporate their doses into their regular daily diet. By using REAL FOOD OIT, Private Practice OIT Allergists sets their patients free to eat whatever they want, whenever they want, how much they want in the real world.
Which brings us to the other bump in the road for OIT. If the pre-packaged food allergy pill company has their way, “lower level medical workers” will be able to mass distribute their product. And what’s so ironic is the same Facebook food allergy ANTI-OIT groups would not consider individualized OIT with a board certified allergist but they welcome a “lower level medical worker” prescribing a template protocol product. Agencies like FARE and Allergic Living refused to educate their members about Private Practice OIT, and now because they are partners with the company who makes the pre-packaged pills, suddenly OIT is ok. It’s all over the news. Of course they are not sharing how some children cannot handle the starting doses which can be 250 times greater than what a Private Practice OIT Allergist would administer. Are they publishing anything about the children who stay on a template dose for weeks in great pain, pushing through, in order to increase again? It’s all “rigged,” as my 11 year old says.
And those “lower level medical workers” have an issue with actual doctors, “We’re smarter.” Ok, well then why aren’t you a doctor then? Some of these medical workers were employed by a study and instructed to take the template protocol doses to the study subject. They recorded data. But that does not qualify them to teach OIT to an actual doctor. But they are leaving the study setting and opening their own consulting companies to set up and/or oversee an allergy practices OIT program. The actual doctor doesn’t know what to do? They turn over their practice to a study staff member, not the director or lead researcher. Then their patients start posting in our support groups that their treatment is going drastically wrong. Well the trainer wasn’t trained in individualized OIT. The doctor isn’t trained in individualized OIT. It’s a mess. And OIT is rather simple. There’s no need for accessory drugs– but in several cases Xolair “fills the fridge” with their product for free and the practice ties that drug to OIT success and charges the patient over $1000/mo for the Xolair pre-OIT injections. Again, it’s all rigged.
Then we have competing allergist selling allergy-free droplets through the mail without ever meeting their patient. We have doctors administering 60 peanuts/day to children, chewing on charcoal instead of using epinephrine to control reactions, and claiming there is no observation period– even when their patients are reacting riding bikes an hour after taking their doses. And there are other doctors who believe food allergy injections are successful even after a death at Jewish National when a study subject received the real thing v. placebo.
What OIT Works, Inc does, is wrap up all these frayed motivations and practices, and set them to the side. We do not engage. We try not to. If you ask one of our Private Practice OIT Allergists, they are just doing their jobs. The more patients they treat the more money they make, but they know they can only treat so many patients at a time safely. OIT patients require more time than someone just there for a checkup or allergy shot. Our allergists are on call 24/7/365. Some doctors do not want that intense commitment. And that’s fine. But they should at least know what OIT is and what it isn’t. No one has done that yet except us. We have nothing to gain except setting people free– free from ignorance, opportunity, and a life time prescription of an unnecessary pharmaceutical product.
So when you see “OIT Set Me Free” or “OIT Works” or “OIT101” or “Private Practice OIT” you’ll know it’s us. Or trademark infringement.