Welcome October!

Happy October Members!

Before we get started, let’s rejoice with celebrations and victories! One recent post by Gail Reynolds Frank was filled with funny stories of life transformation as her daughter moved through OIT treatment. Here are a few favorite quotes:

“I don’t even know where they went to eat! Who cares? Sarah was annoyed she had to wear a dress…”

(Of OIT) “…we LIVE like it’s a cure.”

“The Epi-pen becomes your Epi-friend and you know if, for some strange reason a reaction occurs it simply stops a reaction immediately and you text your doctor. Epi becomes the spare tire in your car, the fire extinguisher in the kitchen, the band aid in your purse. With it you are invincible and unafraid. Life is incredible when food is just food!”

“…a teen headed out for a night with friends can be focused on complaining that she has to wear a dress.”

CONGRATULATIONS to Sarah and all of you who are

CHANGING YOUR FOOD ALLERGY STORIES!

In our group news:
Recently, we removed members from various facebook support groups for mentioning doctors not on our List. Though we have explained our reasoning ad nauseum, I will be more blunt in hopes everyone finally understands. Caps are utilized for emphasis– and maybe a little screaming.

1. We are volunteers. No one pays us for what we do. If you do not understand what we do, read our groups to get an idea. There are members to add, questions to screen, referrals to explore, doctors to interview, connect for training, add to the List (which physically takes about 4 hours/physician), updates to the websites, meetings with lawyers and nonprofit experts to ensure what we have created continues to thrive and exist, etc…

Only Private Practice OIT Allergists have been appreciative and helpful of our Mission.

Most importantly, only Private Practice OIT Allergists have risen to the needs of their patients and offer actual life-saving food allergy treatment to our children.

Sure, hospitals and research facilities want free advertising but Private Practice OIT Allergists are helping us help them to build a network of specialists who do not operate

under the bureaucratic constraints of most

typical professional organizations.

We are NOT typical.

Private Practice OIT Allergists are our thought and action leaders for food allergy treatment,

and as of THIS date,

ONLY OIT HAS BEEN PROVEN “SAFE AND EFFECTIVE.”

Had the hospitals and research facilities done their jobs, WE would not have HAD to dedicate our time, energy, resources, etc… to do their job by sharing the news and building the infrastructure for the sub-specialty of OIT under the specialty of Allergy, Asthma, and Immunology.

2. It is not uncommon for doctors who are removed from our List to threaten suing us. It’s only happened a few times but we’ve come to expect it. Though we copy all your complaints in the event we need to defend our action, we would never betray your privacy unless forced in a court of law. That said, we have neither the time, money, or desire to play litigation games. We are funded by your donations and what my husband has graciously and resistantly spotted us to pay for website hosting, tech help, pens, postage, fees, etc… It’s much easier if we KEEP DOCTOR NAMES WHO ARE NOT ON OUR LIST OFF OF OUR PAGES.

3. If you do not like our “rules” and/or think we are doing this for any other reason than stated above, you are invited to start your own group to promote researchers and hospitals. And no, you may not copy anything from our groups. Everything you see on our pages is due to my efforts and the help of our amazing doctors members. We are protected by copyright and intellectual property laws. We’re not here for you to copy and take credit/profit regardless of your intention. If you want to build a community, do it like we did– one member at a time. If you want to build a database of stories and information, do it like we did– one need at a time.

4. It’s one thing if it’s taking me too long to add your doctor and we know s/he will be added. It’s another to assume just because they offer OIT they are a good fit for our List. Here’s how I most recently explained this to our Admins.

“Her doctor isn’t on our List. So what if s/he “trained” with one of our doctors? Our doctors tell me who to add if that’s the case. Just buying the protocol for $X does not make you qualified to be on our List. And this is exactly why I do not rush to add them. If they’ve had a few patients, they’ve worked through these issues, either by going through me to connect them with an experienced doctor, or reaching out to them on their own. [The doctor is having trouble… BECA– USE THEY WERE NOT TRAINED THOROUGHLY. ] … [And, as an after-thought, they have a few conversations with our doctors about what to do for their patient] …that does not mean they [were actually TRAINED] or [automatically] get on our List or mentioned on our pages. If their doctor isn’t on our List (yet or ever) no. They cannot utilize our attention or time…We don’t need to know any of this———— go to Dr. X, who IS on our List and you wouldn’t be in this place. Don’t bring us your unsupported [hardships].”

*** If you post hardship questions, please mention that your doctor is on our List. Otherwise, it takes longer to confirm and approve your post.

5. I have referred patients and counseled/coached families for years even though their doctors were not on our List. I am not doing that anymore for various reasons–mostly, I do not have time. And when I think of the audacity some doctors have to expect me to continue pouring our time, energy, and resources into their patients without even having the decency to accept my call so I can confirm what I am telling their patient is accurate, no. I’m not doing it anymore. If your doctor is not on our List and you have questions, read and search our pages. Almost everything in OIT has been discussed from Peanut Anaphylaxis Cure to Private Practice OIT to OIT101 to OIT Trials. Additionally, we have our private group for EoE if your dosing plan has been altered or interrupted for suspected or confirmed EoE. Call their offices and insist they make time for your questions. Or find a doctor on our List because I know they will. *** There are a few exceptions to this rule. Members whose doctors were on our List and we have maintained our relationship nevertheless. Hopefully, you know who you are. Our support of you does not stop just because your doctor was removed. Sometimes you need even more support.

6. For those of you who cannot understand why I am not listing every hospital, researcher, doctor who may or may not be offering OIT, it is because we have a particular set of values and considerations that guide us. If doctors, regardless of their affiliation, cannot commit to us, their patients, and each other, we don’t want them. If they do not offer OIT in the same general sense, at least maintain the safety levels and or willingness to work with each other for the patient’s sake, we do not want them. Even when we were scrambling for doctors to help us, we maintained a standard for what we would allow to be done to our children or selves. That is what rules us. We have the most patient, determined, skilled, and conscientious human beings who happen to be board certified allergists on our List. We are beyond blessed. We will not waste our limited time, energy, and moods defending our policies and practices to anyone.

7. We do not want your “publicity” if it means compromising our values and twisting the reputations of our physicians– we are not putting them in the line of fire or debate. OIT is not a “get rich” trick. And we don’t have to “compete” with typical professional allergy organizations because we specialize in something they do not have–Private Practice OIT Allergists.

Those organizations have been paid boatloads of money from allergists and doctors, nurses, administrators, in various fields of medicine, to provide current news and education. They have failed. How do I know? My family is out enjoying their day and I am here working on OIT– appreciatively. I still might not get that doctor on our List, but he is demonstrating Grace and Understanding, which reinforces and strengthens our determination to make sure people know who they are and what they offer. We have technical and structural things to work out. If we had a fraction of revenue that the professional organizations have, he and perhaps 60 others would be on our List by now. Eventually, there will be hundreds, and thousands, across the planet. We can fall apart in complicated times, or we can be grateful and keep doing our best by any means necessary– even taking breaks.

“I’m at the pool watching my children. Why aren’t you calling my doctor.”

Yeah, … that only gets you deleted and blocked. Here’s how your conversation with the doctor office goes, “Hi there. I’m at the pool watching my children so I might have to hang up but I’ll call you back when I can. I’m calling about your OIT program. A friend of mine said you were going to start offering OIT in the fall …….”

Then YOU can provide US with your helpful information– all while you tan.

8. Example:

“Dr. Well-Respected is offering OIT at our local hospital. I thought you would want him/her on your List and to tell everyone because some people aren’t independently wealthy and cannot travel. We are not rich so we’re going to him/her regardless.”

Good for you! Start your own group and let your members know. If and when an allergist who works at a hospital is running an outpatient OIT clinic, and they have complete control over how they treat their patients, like our Private Practice allergists, I will happily share that information with our doctors and let them determine how they would like to proceed. Who do they want side-by-side on their List? If we have no conflicts or former negative experiences, it shouldn’t be a problem. It will be the physician on the List, not the hospital. Trials are different. See our OIT Trials group.

As for OIT funding, we all make our decisions and establish our priorities. You will have to make arrangements for traveling to the office, having your other children taken care of, any missed school assignments, preparing doses, etc… whether you live across an ocean or 10 minutes away. “My children will not eat food from that country.” If OIT is that important to you, you will find a way. They will learn new tricks. We can always find objections and sometimes money is simply not there. No one is judging you and neither should you. Read. Read more. Keep a journal of your thoughts and the information you gather while considering treatment.

If you find a local allergist who is interested or offering OIT, please let them know about us and we will help if we can. You are 100% allowed to pick up the phone and make your own calls!!!

There is no need to ever wait for me to call on your behalf. I love you for having such faith and trust in me, but if I made this happen for my son, and acquired immeasurable help from other parents to procure help for thousands of others, you can do this too! You can contribute time, knowledge, or money to speed things along and expand our OIT world.

Thank you members, our amazing Admins, and Allergists!