OIT to cure food allergies

[Acorn]

This time of year always brings several food allergy threads. I don't know much about OIT treatment but two friends have their children involved. For one of the girls, she has overcome a peanut allergy. It's amazing to me but hard for her because she doesn't like the smell or taste of peanuts but will need to keep eating a daily dose. Are these treatment plans available in other places? What do you think will be long term results?

[mellifera33]

We did a desensitization protocol with my daughter about two years ago. She is now able to have milk and egg products without restriction. Our local children's hospital does not do peanut OIT yet--but we hope to do that in the future also. I don't think that there are good studies of long-term outcomes, but our allergist has has good results in his patients doing milk and egg desensitization. He did mention that he sees better results with very young patients. 

[lexi]

I have wanted to do this but haven't found a doctor in my area who does it. I wish my daughter was not allergic to dairy or eggs. It's so scary and so hard. I've wondered if it works in the long term and the thought of trying it terrifies me. But if it would work...sigh.

[linguistmama]

This website has a list of doctors that offer OIT.

 

http://www.oit101.org/find-an-oit-allergist/

 

My daughter finished OIT for her peanut allergy in May and it has been amazing!  It is a miracle to see her eat peanuts everyday instead of constant anxiety about them.  We are fortunate that our daughter does not dislike peanuts.  Many parents have to get creative with giving the maintenance doses. Our daughter is free eating as much as she wants, but some children choose to stop at a smaller dose.  That way they are bite proof from an accidental exposure, but do not have to eat as much of a maintenance dose. This facebook group is very supportive of OIT if anyone has questions for a larger audience:

 

https://www.facebook.com/groups/OIT101/

 

We decided to do OIT because we knew that we could not avoid exposure no matter how careful we were.  With OIT it was in a controlled way and our doctor's success rate is over 90% so it was highly likely to be successful.  I believe they are doing studies about the long term effectiveness where participants stop taking the maintenance dose.  We're happy to just give her peanuts everyday, but we are interested in the long term studies for when she is an adult and may or may not remember to take them without us.

[Acorn]

I was curious but couldn't ask my irl friends, is it covered by medical insurance? Is it considered experimental? Is the peanut treatment offered near us not common across the country?

 

I've known other children who outgrew food allergies? Do you think that for the one success case I know that she would have eventually outgrown it anyways?

 

It is just fascinating cutting edge research. I admire the people I know for attempting it.

[Spryte]

My son's allergist has recommended against it.

[linguistmama]

Many insurance plans cover it, ours did. The numbers I have seen say that about 20% are likely to outgrow a peanut allergy. Our first allergist was not supportive and we ended up switching. OIT is not for everyone of course.

[Ellesmere]

I started out very interested in OIT and still keep an ear out for new information on it. This is just what drove our decision against-- just IMO. As of now, with no reasonable way to pay for it (which will vary depending on the office and your insurance),being too far to travel (some people are ok with moving or flying), and having a good chance of not being able to complete a protocol due to other conditions, plus other boring details -- it is not right for us.

 

Our allergist is not in favor and while I don't agree with every single argument ever made against it, I see her points, particularly with regard to long term results and our situation being particularly unfavorable. I do look longingly into it because we have had to Epi ... but my head keeps saying it just is not the right decision for us.

[weddell]

We have started it with two of my kids. We are lucky that our local allergist is doing (one of only two in IL)! Definitely read the OIT101.org website linked in a previous post, there is so much information there. The facebook group mentioned in the same post is also really great. 

 

There is a lot of mis-information out there about it. OIT isn't for everyone, but I would hate for people to dismiss it for the wrong reasons or because they don't understand it. Even a lot of allergists are really behind in the research and are spreading bad info. Here are some OIT myths: http://www.oit101.org/top-10-oit-myths/ . 

 

The biggest one is that people won't do it because it isn't FDA approved. Here is the answer from the OIT website:

 

Dr. Chad Mayer explains the answer simply: “Many question if this procedure is FDA approved. OIT does not utilize a medical device or medication and therefore does not fall under the purview of the FDA and it will not approved or disapproved by the FDA.â€

Dr. Richard Wasserman shares his perspective: “Regarding your question about FDA approval, the FDA does not approve treatments. They only approve drugs and devices. FDA “approval†is not required for a physician to treat a patient with OIT. In fact, the FDA will only approve a “drug†for use in desensitization by OIT. There are investigators who are studying the use “pharmaceutical quality†foods for desensitization. Most physicians currently doing OIT use off-the-shelf foods. If the FDA approves, for example, a peanut formulation for OIT, it is likely that the cost will increase dramatically because instead of paying a few dollars for a pound of peanut flour, it will become a drug. I don’t think this will help patients.â€

There are a couple peanut allergy treatments that are in clinical trials and will likely eventually get FDA approval. So far they do not seem as effective as OIT and they will be expensive. The peanut pill is just the same peanut flour used in OIT and putting in in standardized doses making it easier for doctors to administer. But then doctors lose the ability to tailor the doses to what the patient can tolerate. It also means that doctors who aren't really qualified to do OIT will prescribe it and that seems like a recipe for disaster. OIT is time intensive for both the doctor and the patient. It relies on doctors being super on top of what is going on and being specialists in OIT. 

 

OIT has been studied for over a decade at this point and has a very high success rate in private practice (higher than in clinical trials because of the strict rules required in trials). Although not common now, the science is definitely moving towards this being the answer to food allergies. I think over time the methods are going to be refined even more as we learn about the long term requirements (you have to frequently eat your allergen to maintain the desensitization), and hopefully make the whole process easier and more available. 

 

Our insurance is paying for it because the visits are just in office food challenges that they have always paid for. I pay my regular co-pay each visit. We also paid a supply fee upfront. This is to cover the food and supplies they buy. Our doctor has a local pharmacists that compounds the low peanut doses (the first doses are measured in micrograms! suspended in liquid) and the fee pays for that. 

 

 

[YaelAldrich]

My daughter graduated from peanut OIT two and a half years ago. We love the freedom she has, even if she isn't crazy about eating peanuts. I've posted a bunch about OIT on here. You can look up her story here or on OIT 101. Would do it again in a heartbeat.

[wapiti]

 

http://www.oit101.org/find-an-oit-allergist/

 

Thanks for this link.  It seems odd to me that there's only one allergist in our state offering this and it isn't the large practice nationally known for allergy expertise.  But, I am unaware of the lay of the land on this topic.  My asthma boy (who is also peanut-allergic) is doing shots for environmental allergies, which would seem to be a similar idea, though thinking out loud, I suspect the gut, where so much of the immune system resides, adds an entirely different dimension to the immune action.  We are no strangers to outside-the-box treatments, so we will keep an eye on this one.  For accidental exposure, the late high school and college years probably worry me the most.

[mellifera33]

I was curious but couldn't ask my irl friends, is it covered by medical insurance? Is it considered experimental? Is the peanut treatment offered near us not common across the country?

 

I've known other children who outgrew food allergies? Do you think that for the one success case I know that she would have eventually outgrown it anyways?

 

It is just fascinating cutting edge research. I admire the people I know for attempting it.

 

Insurance coverage wasn't an issue, since DD's milk and egg allergies were not anaphylactic, and we used regular milk and egg from the grocery store in tiny amounts for the protocol. We had a few extra office visits, but those would have been covered anyway. The peanut protocol seems to be harder to find. I don't think that there are any local practices that offer it. 

 

My daughter outgrew her coconut allergy without any interventions. After a couple of years of avoiding it, we did an in-office challenge, and she was able to eat quite a bit of shredded coconut meat without any reaction. She loves coconut now. :) I don't know if she would have outgrown the milk and egg allergies, but desensitization was the right choice for her. Her diet was so limited when we were avoiding milk, egg, peanut, tree nuts, and coconut!

[Spryte]

Thanks for this link.  It seems odd to me that there's only one allergist in our state offering this and it isn't the large practice nationally known for allergy expertise.  But, I am unaware of the lay of the land on this topic.  My asthma boy (who is also peanut-allergic) is doing shots for environmental allergies, which would seem to be a similar idea, though thinking out loud, I suspect the gut, where so much of the immune system resides, adds an entirely different dimension to the immune action.  We are no strangers to outside-the-box treatments, so we will keep an eye on this one.  For accidental exposure, the late high school and college years probably worry me the most.

 

We're watching it, too.  And feeling cautiously optimistic about it as a future option.

 

For the moment, there is not an allergist offering this within 4 hours of us - and that makes it very difficult, if not impossible for us.  To do it, would mean a major time/travel commitment weekly.

 

But more than that, our son's excellent, nationally known allergist has advised against it for the time being.  DS has multiple life-threatening allergies, we are way past peanut here, so I'm not sure if that's factoring into her advice.  I do think it's still considered experimental, and as such - our insurance would not cover it, though we'd still do it, if she recommended it.  She knows our son's level of allergy, and his allergens, and we trust her.

 

What tipped me into agreeing with her to wait, though, wasn't the research or the results that people have supplied anecdotally, we have heard rave reviews, and of course we want to do anything, anything to help our son.  So I was considering the doc who is just over 4 hours away, and committing to at least investigating further.  When we really got into a discussion about it, she was pretty excited about the research (as am I), but concerned because all of the docs doing this in office, before the research is completed, are contributing to a body of anecdotal evidence, but not participating in the  controlled studies that will give the type of scientific evidence that will lead to this being offered by more board certified allergists.  That appealed to the scientist in me, and sort of tipped the scales.  That, I could understand, because it *is* being researched, there are studies being done.  My DS does not qualify for those studies, but eventually they will be completed, and this will be more mainstream.  I hope it will be a cure, or if not a cure, at least another way to manage serious allergies.

 

My own life was saved by an out of the box treatment, but there was a huge body of peer-reviewed evidence to back it up.  DS has had controversial treatments for other conditions, and we all see an alternative med doc.  So, same here, we are not opposed to out of the box treatments.  At all.  

 

I hesitated to write this out, because I don't want to come across the wrong way.  I fully support anyone choosing this option for their family, and I think it's very cool.  We'll probably go the same way, once more studies are finished, and I'm looking forward to it.

[wapiti]

DS has had controversial treatments for other conditions, and we all see an alternative med doc.  So, same here, we are not opposed to out of the box treatments.  At all.

 

What strikes me as funny now that I think about it is that ds's allergist is part of an immunology practice where our other ds is receiving treatment for a condition so controversial that other mainstream docs in our area disagree on its existence.  In other words, our immunology office is already way outside the box (yet aren't ready to offer OIT at this time).  I like them because of their particular view of the big picture, which turns out to be the very reason the allergist joined the practice not long ago.

Edited September 11, 2016 by wapiti

[Lady Florida.]

We have a friend whose daughter had a severe peanut allergy and she graduated from OIT >1 year ago. It's amazing to see her go to a restaurant and order anything she wants. She does have to always eat something with peanuts or peanut butter as her "medicine". Some doctors say every day, some say several times a week.

 

 

1. , is it covered by medical insurance?

 

2. Is it considered experimental?

 

3. Is the peanut treatment offered near us not common across the country?

4. I've known other children who outgrew food allergies? Do you think that for the one success case I know that she would have eventually outgrown it anyways?

It is just fascinating cutting edge research. I admire the people I know for attempting it.

 

Numbering is mine so I don't have to break up the quote.

 

1. Many (most) insurance companies don't cover it. Our friend's didn't and they made severe sacrifices in order to have their daughter go through OIT. Unfortunately not everyone is in a position where cutbacks in other areas will provide enough money for the treatment. It's worth at least checking with your insurance.

 

2. It's considered experimental partly because there aren't enough long term studies to know if it's effective. This is often the reason insurance won't pay for it. They don't want to pay for a treatment that might not last. I find that silly. They pay for my back injections that only give me relief for a relatively short time, yet they won't pay for something that could give a person (usually a child) a chance to NOT DIE because they ate something that was cross contaminated. Sorry for the rant. Yes, it's considered experimental.

 

3. I saw that someone posted links to show you where you can find doctors who provide OIT.

 

4. Peanut allergies aren't usually outgrown. 

 

Different doctors use different protocols, which probably keeps those studying its effectiveness from getting good results. Our friends chose a doctor in NC who used carefully measured peanut flour for the doses. They drove from Florida to Raleigh every other week for over 2 years. She was almost ready to graduate when he decided to close his practice and accept a research job with a major company. They found a doctor on the other side of Florida who accepted her for the final stages of treatment (at the time they were looking for a doctor he wasn't treating peanut allergies).

 

Some doctors, like my friend's, use peanut flour. Some use peanuts or even peanut M&Ms. You'd need to check with any doctor you're considering and find out how they treat. Most will keep the patient for about an hour to make sure there's no adverse reaction, especially when they have their "updose" appointment.

 

It is fascinating and amazing. I hope someone can standardize the treatment or several types of treatment so real studies can be made and more people can benefit. 

[NoPlaceLikeHome]

I started out very interested in OIT and still keep an ear out for new information on it. This is just what drove our decision against-- just IMO. As of now, with no reasonable way to pay for it (which will vary depending on the office and your insurance),being too far to travel (some people are ok with moving or flying), and having a good chance of not being able to complete a protocol due to other conditions, plus other boring details -- it is not right for us.

 

Our allergist is not in favor and while I don't agree with every single argument ever made against it, I see her points, particularly with regard to long term results and our situation being particularly unfavorable. I do look longingly into it because we have had to Epi ... but my head keeps saying it just is not the right decision for us.

Are you able to travel to John Hopkins for an evaluation for possible food challenge? We were told son had severe peanut allergy based on skin test results by 2 different allergists and that said he would have to avoid nuts the rest of his life. JH evaluated his history did RAST blood test and based on those results gave food challenge and gave green light to eat nuts. even with mild tongue itch or a couple hives on face or slight abdominal discomfort which disappeared after 40th dose or so.

 

If you are not close to JH, perhaps they could refer you to someone else. JH was covered by insurance too but check with your insurance.

 

The OIT list does have quite a few doctors around the country too.

 

[blue daisy]

My 9 year old has a peanut allergy in addition to a number of environmental allergies.  When we learned of his peanut allergy at age 1, we took him to our local clinic which is also a very well known and respected clinic/hospital and the allergist there basically told us to avoid all exposure and bring him back for a check up in 3 years.  We were not ok with not doing anything so we took him to an allergy clinic about an hour away that uses sublingual drops to treat allergies.  He's been on that program for several years now. For the first year, they treated everything except the peanut allergy, then gradually added peanut to his drops.  At his next appt, we are supposed to do a peanut test and then he would have to eat a peanut M&M a day for treatment.  We are so excited about the therapy because it changed us from a position of being afraid of everything he touched or came into contact in public (did a kid that just ate a PB&J just go down that slide at the playground? Or did a kid read that library book while eating peanut butter?)  to a place where he can live a pretty normal life and eat pretty much anything except actual peanuts of peanut butter. But we don't worry so much about the "processed in a facility that processed peanuts" foods anymore.

 

Our insurance does not cover the actual drops (because they are not FDA approved) but they cover the allergist visits and testing.  We go once a year for a visit and testing and then they mail us the drops every few months.  It is absolutely worth the cost to us if it means he can live a fairly normal life and that a reaction would be mild if at all vs. life-threatening.

[Ellesmere]

Are you able to travel to John Hopkins for an evaluation for possible food challenge? We were told son had severe peanut allergy based on skin test results by 2 different allergists and that said he would have to avoid nuts the rest of his life. JH evaluated his history did RAST blood test and based on those results gave food challenge and gave green light to eat nuts. even with mild tongue itch or a couple hives on face or slight abdominal discomfort which disappeared after 40th dose or so.

 

If you are not close to JH, perhaps they could refer you to someone else. JH was covered by insurance too but check with your insurance.

 

The OIT list does have quite a few doctors around the country too.

Thank you for the information about JH. No, we wouldn't be able to travel. Without going into a lot of personal details, it's too far for the cost/benefit ratio to make sense, but if we were closer, JH would be on the short list.

 

My allergist did a thorough evaluation of my food history, symptoms, skin, RAST, and component testing for peanut and based on that combined with my raging birch pollen allergy, she has concluded that my peanut allergy is not the one that is likely to trigger a severe reaction. I only tested positive to the Ara h 8 and based on that *AND* my other results/history, she was comfortable telling me that, for now, peanut is not what's going to send me over the edge. This link slightly goes off topic but it discusses the benefit/caveats of component tests: http://www.aaaai.org/ask-the-expert/component-testing-peanut-allergy

 

We do have a family member that went through the same thorough evaluation for peanut and a couple other allergens and the unfortunate conclusion is a have a high risk of anaphylaxis. I'm the only one who has had to Epi, but it was not to peanuts.

 

Anyway, thanks. From what I understand the OIT practices wouldn't begin a protocol without being absolutely sure that a person even needed it -- so I wouldn't even be a peanut candidate for OIT, the other allergic family member might be. But between practical and medical concerns that we have (and certainly not shared by everyone) we are optimistic about OIT for others, and are ok with staying the course with our current allergist.  

[ikslo]

My son's allergist has recommended against it.

Same here. But she does it with other patients (I thought - but just looked it up and perhaps she only does the food challenged, not the oit). DS' numbers are just too high for her to even consider it at this point she says.

Edited September 11, 2016 by ikslo