OIT AND FEAR

PREFACE: THIS IS NOT MY POST!!! (BUT WAS GIVEN PERMISSION TO SHARE). THIS IS A LOOOONG POST CLEARLY STATING THE BENEFITS AND THE RISKS. I AM POSTING IT SIMPLY FOR THOSE WHO MAY WANT TO EXPLORE OIT FOR THEIR OWN CHILD OR THOSE WHO ARE INTERESTED IN LEARNING MORE ABOUT IT. THIS HAS NOTHING TO DO SPECIFICALLY WITH COBY'S JOURNEY BUT I AM POSTING IT BECAUSE SOME EXPRESSED INTEREST ANYWAY AND OTHERS MAY BE CONSIDERING OIT FOR THEIR OWN FAMILY. THIS IS A VERY WELL WRITTEN POST. BETTER THAN ANYTHING I COULD HAVE WRITTEN:

OIT & EPI FEAR: It's the #1 fear we hear over and over. Unable to start or explore OIT because "I've seen a lot of posts about having to use the Epi in treatment." So here's a post and a graphic to help you reframe that fear and think about it differently. Because to hold your child back from a treatment with 80-90% success rate because of YOUR FEAR isn't fair to them. It is something you can work on--either through ideas in this post or with a trained professional. Yes, some of you parents should get a therapist to work through your issues with food allergies and in treating them. There is no shame in trying to set yourself free.

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1) PLAYING THE ODDS: OIT WORKS

Imagine having a conversation with your 25 year-old child and explaining you didn't pursue OIT for them because you were afraid. What would their response be? How would their childhood have been different? I couldn't risk that, knowing the very high odds that my daughter's life would be dramatically improved. With OIT we are playing the odds.

Here's the way I think about "trying it" if you've come this far. The studies and practice statistics are remarkably consistent with the 80-95% number. When I looked at my daughter I could not imagine sentencing her to an FA life if she were in the lucky 80%. How would I explain it to her? Sorry, I was too scared to try? If she's in the 5-20% who fail, well, we stop and we have some scary and perhaps unpleasant times but we can stop. I won't regret it.

So your child is already in one camp or the other: the 80% it works for or the 20%. You just don't have any way to know which one. You're just waiting to see the lottery ticket.

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2) STRICT AVOIDANCE AS A TREATMENT IS A FAILURE: ACCEPT IT

Too many people reject OIT as being too dangerous--as if they were evaluating it from a perfectly safe place instead of sitting on a powder keg. Folks, you are driving without a seat belt and airbags and worrying if adding those to the car will cause injuries in a car crash!

The big difference with OIT parents is that we've accepted the failure of "strict avoidance" to protect our kids. And we aren't willing to live a frightened, hyper-alert, always-prepared way of life trying to chase something we have no control over. Peanuts and trace residue are everywhere. People are idiots. Accidents happen and mistakes are made.

If you want to scare yourself, do it with the risks of the choice of "no treatment" Because that is a choice--to accept the current state or risk as an acceptable treatment. Without OIT, The American College of Allergy, Asthma and Immunology (ACAAI) says nearly 15% of patients per year have accidential reactions. Stanford says approximately 25% will have a near-fatal anaphylactic reaction at some point in their lives. So that's your baseline. 200,000 ER visits a year and millions of reactions that never reach a hosptial. Millions. As a friend of mine said, how many photos every week do we need to see in the No Nuts Moms Group of hives, rashes and kids in the ER to accept that strict avoidance has a high failure rate? Saying "no" to OIT means you are choosing this course of "treatment." If you were just starting out, is that what you would choose?

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3) EPI PENS WILL BE NEEDED WITH OR WITHOUT TREATMENT

It's a hard thing any way we look at it. We have allergic kids who are staying allergic. ANA is always gonna be there along with our Epis. With or without any treatment it's there. We have no way of truly comparing our child's risk of ANA on any given day. So choose to accept that both paths have a risk: "Strict Avoidance" has an X% risk, and OIT has a Y% risk. You can make yourself crazy trying to compare X and Y (and many of you do). Better to accept and view the Epipen as a tool to manage it. Better to decide that maybe X=Y since we can't know and not think of the EpiPen as the deciding factor in doing OIT or not.

Some do have to use Epi during OIT. It is a risk, and a reality. If it were closer to zero RISK, OIT would likely be more widespread and done by more doctors. Our docs that do this are the best--they really understand how to minimize the risks. When we see ANA here--and you can see old posts, most of the time the parent can figure out a reason for it--not following "the rules" strictly, or a viral illness etc. But we do see random unexplained incidences.

So yes, again ACCEPT IT that you will see each and every month that a few people have to use Epi. Stop being shocked and amazed and paralyzed by it. Hundreds have left the group and gone happily on to live their lives. When we "see" Epi events we assume everyone is having them. Everyone! The rule of support groups is that we see and hear what the problems are.

No one can estimate a percentage of risk whether your child will have ANA with or without OIT. That's the calculation those of us who proceed did in our heads. For me, even if it was equal--5% or 15% with or without OIT, who knows?--the scale ripped toward OIT because it allows us to live normally and participate fully in life. To get rid of the fear of food, the social exclusion, the emotional stress and worry. We will always pay attention and carry Epi but she gets to have a life and SEE every day when she eats her peanuts that she is safe.

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4) YOUR QUALITY OF LIFE AS A FOOD ALLERGIC FAMILY ISN'T GREAT NOW.

You can argue this one....and if you have a child with no social, emotional or pyschological issues with their FA life, then you don't need OIT. If their teen years won't be faced with many challenges due to the FA's, then you don't need OIT. Leave the group and go live a happy life!

The studies will prove you wrong in how dramatically OIT transforms life not just for the patient but for the whole family, because the quality of life just isn't great with food allergies. Again, those of us who made the choice to do OIT accepted this fact and weren't willing to compromise on it further. We want normal life. 81% of us just want to be safe from cross-contamination and perhaps eat something with peanut in it. We want peace of mind.

You have to decide if the risks concern you since we live with risk of death everyday anyway. You might think you are switching one set of risks for another. Yet by switching these risks we actually have an excellent chance of lifelong freedom. Because the equation is:

Poor quality of life = High daily fear + daily risk of contact / reaction + social exclusion
High quality of life = Low daily fear + daily risk of contact /reaction + social inclusion

When we are able to know we have some tolerance for peanut, the daily fear goes away, pretty much to zero. We therefore can fully participate in life: parties, eating out, traveling, and yes, kissing! The second part of the equation doesn't go to zero, we know we might still have a reaction but the risk goes much lower. This is why OIT is a miracle treatment and the quality of life studies prove it.

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5) YOU WILL STILL HAVE EPI/ANA FEAR BUT IT WILL BE REPLACED WITH JOY FROM NORMAL LIFE

This is the graphic below. On the left, your fear/worry about using the EPi is a huge presence in your life. Your focus is around staying safe and managing it as best you can. There are costs of this way of life--financial, emotional, social, burnout...it's endless. And still the Epi/ANA fear is there. It gets worse as they age--and they will--and spend more time away from you, OR they become socially isolated because they can't go places and do things.

Here's what happens after OIT. PAY ATTENTION!!!!!! ------> You still have the fear. See? It's still there in the diagram on the right. But it SHRINKS. It gets moved out of the way because the rest of your life is filled with good things: social events, shopping is easier, less stress with family, your child can go places and give you a break, you can travel, eat out. I am living this NOW after a 2 year "stint" in the food allergy world, and I can tell you that Epi/ANA fear shrinking just happens over time. I'm still ready, probably MORE ready than before to use Epi if needed, but I feel I would be very calm if it were to happen. Because the rest of my life is moving back into balance. When you become empowered you can deal with a little stress.

The reason we treat is that we want to LIVE LIFE. They get released from the social and emotional burdens. The Food Fear. So while we don't ever get totally free of that little nagging ANA worry, when we see them eat the peanut everyday with no issues there is such a physical and psychological sense of relief it's hard to explain. I didn't expect that but when we got to 1 peanut and I saw her EAT IT it was an unexpected sense of relief.

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6) IF OIT DOESN'T WORK, YOU STOP

We aren't removing parts of their brains, or limbs, or loading them with drugs or chemicals, or x-ray beams....permanent, scary damage....you can simply...stop. If it doesn't work, if anxiety is an issue, if GI symptoms are too much, if there's any pain or problems...you can stop. That day. Just stop. No weaning or complications, just stop. The doctors say they just return to normal. You could decide your own min/max if you want: "3 pukes and you're out!" or whatever line you wish to draw.

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7) OIT HELPS YOU VIEW THE EPI AS A TOOL
I am always amazed at how OIT refines skills at giving the Epi without hesitation and the miracle of the drug. I know it freaks everyone out but I now have an opposite feeling. I feel calm and prepared should she suddenly have one of these bizarre episodes. Where I felt helpless before OIT, the "halo effect" of the joy of eating CC and returning to normal life has made the fear of a possible EPI event a tiny little compartment in my brain.

If you've been paralyzed by seeing Epi events happen in the OIT group-- I urge you to go back and look closely at the old posts. What happens? Did they have a theory as to the cause of the ANA? Usually they do. In every case, do the parents handle it calmly and carefully? Isn't it different than the other food allergy group posts you read, full of panic, and often guilt? Most importantly, did the family quit OIT? Why or why not?

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OLD COMMENT FROM LISEETSA:
"And the results, while we consider it a miracle, it's science and biology. Retraining the body to accept something that previously viewed it as danger.

We can turn any conversation into another topic based on fear, which we all have, and we can find an "excuse" or real reason not to do anything. But you don't want to be stuck in an intersection afraid to go either way.

First, would be to make a checklist of reasonable fears-- "PAIN" being the most actual thing that we've seen related to OIT. So then search it and see what others have said about it. And understand, no one wants to create pain in their child-- we are trying to prevent it from happening ever again if possible. Trust me-- you would DO ALMOST ANYTHING WITHIN REASON to make sure that never happened again.

There will always be a voice in your head saying, "That's great but what if..." when you read celebratory stories. And anyone of us could be the tiny percentage that cannot be helped at this point-- but I'd rather TRY then never know and having something worse happen.

Have faith that if you are HERE in this group, we share the same fears and act upon them differently. To adopt new thinking and new habits takes more for some than others. My grandmother told me decades ago, "In a family this big, if you are going to let everthing anyone says to you ruin your day, you are in for a world of hurt." And I was-- because they were genuinely mean, controlling people. No one is forcing anyone here to do anything. We are sharing our FREEDOM stories and answering as many questions for you as we can. No one is getting paid. Everyone is dedicating their time to helping so everyone can be in a better place."

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QUOTES FROM PARENTS

"That's what I think of is the future..when I lose control of every situation my son is in. He is going in 5th grade and I have gotten a taste this summer. .going to movies with friends and their families, going to water parks with out me, more sleepovers. So far I know the families very good and they all are okay with his food allergies, but it may not be this way forever. He is going to want to go more and more places without me."

"I am helpless doing nothing, so it's time to take control and protect my little boy!"

"Avoidance has not been enough to keep my kids safe from an anaphylactic reaction. We have experienced contact reactions at gymnastics, airborne reactions at the little league field and cross contamination reactions on vacation and at a restaurant. For us, OIT is the only choice."

"Eleven years running and next to no reactions. I can handle my dd's allergies fine. Until. Until the airborne reaction to a bag of peanuts in a conference-sized room. (Whaaat?!?) Until we want to get on a plane without having a nervous breakdown. Until she wants to go away to college. Until her 1st kiss. That airborne reaction a few months ago made me realize, by *not* choosing a treatment I made a choice. I say this without judgement of anyone's choice (or non-choice) of treatment. I say it because I never realized my *non-choice* had consequences....worsening allergies and new allergies (tn)."

"...My daughter like your son has lived a very "normal " life. She's had a few hives or tummy issues but that's it. We have been able to keep her in a mini bubble but she's growing up. I want her to kiss freely (maybe:), travel far, try new adventures all things that are limited because of her food allergies. We are doing OIT for her future so she can dream bigger and live freely."

"....I felt just like you! My son is 14 and although his two Ana reactions were at 4yrs old we have avoided peanuts and tree nuts and he lived a pretty normal life besides the avoidances. BUT when he turned 13 I started to get so much anxiety bc of him always wanting to hang out with friends, weekends away, sleepovers and of course GIRLS! It's sooooo different as the get older and they have to start making their own choices without you being there to keep them straight. He just graduated OIT and my anxiety for his future has greatly decreased. Like most parents I worry about long term side affects but I finally came to the conclusion that for us the pros outweighed the cons. I wanted to finish before he started high school in Sept. He still doesn't like peanuts but he has already felt the freedoms that come along with eating them daily so he pushes through. I worry no matter what but it's definitely a different kind of worry. On a side note he did have one Ana reaction when he got to 4 peanuts. We think seasonal allergies played a part but other than that fairly smooth. I'm almost thankful for the reaction bc he knows exactly how it feels now and would react quickly. He doesn't remember his reactions from 10 years ago. He also was very afraid of having to be given the epi but after he received it he actually laughed and said that was it? So I know of he needed to self administer he could do it now. All in all OIT was a good experience and we received the outcome that we were hoping for."

"While it took YEARS to go from determining we would find a treatment for our daughter to beginning a clinical trial, the moment we truly understood that keeping her safe went beyond controlling what she put in her mouth (and acknowledging that it is IMPOSSIBLE to completely control particles in the air and trace residue left behind). For those who aren't sure what to do, I honestly believe there will be a moment or series of moments that lead to clarity about what is best for your child, and your family. While Susan's journey has been astronomically more difficult than we ever could have imagined, she IS safer now than she was (she tolerates her peanut dose far more days than not and in the case of anaphylaxis, she knows what to do). We want something more, but for now, this is success."

"I never had to Epi my daughter until OIT, but you know what? I was so tired of waiting for THAT reaction to happen to her. We'd had close calls (benadryl. steroids, inhalers) but never Epi (and we didn't stop her from eating CC or made in a factory, we never stopped travelling around the world and eating in different restaurants). THAT day was going to happen (and almost did right before OIT started - someone almost gave my daughter a granola bar with peanuts) and I knew that it could be really, really bad. OIT puts me (and her and Dr B) in control. I have confidence that even through the rough patches, OIT works. I'd do it again in a heartbeat."

"...we have learned a LOT during our long journey so far with OIT. One is that my daughter has absolutely NO desire to continue a life where she lives in fear daily of nuts. And she is willing to go to the end of the earth and back to overcome that. Because she knows it is a small journey for a huge reward. And she is tired of a life filled with avoidance and fear. Second, the experiences we have had have been educational and empowering to her. It haven't been easy, I won't lie. But, she had anaphylaxis recently and this is what happened. She came to me and said, "Mom, I'm having a reaction." She had absolutely no signs of any kind of a reaction. FIVE minutes later, it hit. Full blown. And neither of us was stressed, fearful or concerned. We just gave her meds and took care of her. I see this as a HUGE win. She can now tell immediately, before there are outward symptoms, that she is having a problem. She knows how to take care of it and treat it before it is bad. We ALWAYS have her meds, and we are not nearly as fearful as before. We are SOO much better prepared to handle things now. And, I am confident, that we won't NEED that skill her whole life. Just for a short time."