Our son is very allergic to peanuts and less so to cashew, and sesame. We went through oral immunotherapy and it's been absolutely life changing. He used to need an epi pen in case of chance encounter, but now he eats 2 whole peanut m&ms every day to keep his dosage up. It's been difficult finding an allergist in Germany that's willing to accept this and move forward
Obviously everyone's mileage will vary, but I'm happy to see this treatment being more widely adopted
Sorry for being nosy, but did you do oral immunotherapy with or without professional support?
I AM NOT A DOCTOR OR OTHER HEALTHCARE PROFESSIONAL
I looked into oral immunotherapy for tree nut allergies. There's a paper from 2022: https://onlinelibrary.wiley.com/doi/10.1111/all.15212
They did it in a few stages:
1. First three days: test the child with increasing amounts of cashew protein, until the child has a reaction. Use the amount ingested for that reaction, to determine the single highest tolerated dose (SHTD = the maximal amount of cashew protein each patient could tolerate).
2. Next 24 days: the child ingests the SHTD daily.
3. After that: every month, the dose was increased (I think at an in-person visit), and taken at home for the next 30 days.
For #1, I looked at the amounts of protein they gave the child. Table S2 (in one of the supporting documents) shows how much they gave on days 1, 2 and 3. Of course they stopped increasing once the child had a reaction. If you convert the amounts of protein into equivalent numbers of whole cashews, then you get:
- day 1: start with 1/1800th of a small cashew, increasing up to a fifth of a small cashew.
- day 2: 1/5th small cashew, up to 2 small cashews
- day 3: 2 small cashews, up to 22 small cashews
22 small cashews is about equivalent to what they want to achieve by the end of the therapy, i.e. if you don't have a reaction after eating that many, you won't have a reaction to a greater quantity.
It seems a bit hard to DIY it, because:
- The first three days requires very small amounts of cashew protein. At home we don't have either (i) isolated cashew protein, or (ii) tools to measure such small amounts (starting with 0.1mg cashew protein, or 0.5mg cashew).
- For the first three days, we'd need to be very vigilant to watch out for a reaction. I don't know whether, in a supervised setting, they'd observe or measure other factors than just an apparent reaction, to make sure the procedure is safe.
I AM NOT A DOCTOR OR OTHER HEALTHCARE PROFESSIONAL
For curiosity sake, curious if the tree nut allergy here was typical reactions (hives, nose, etc.)?
I have a tree nut "allergy" but doctors always call it more of a "hypersensitivity" because my reactions are usually involving terrible stomach cramps and pain accompanied occasionally by swollen throat (more so for almonds than cashews).
I've wondered if it's worth trying to do this myself.
Why wouldn’t you see the doctor? Cost? Not covered by insurance?
I have in the past but they weren't much of a help. Allergy scratch test results didn't correlate at all.
They referred me to a throat doctor to make sure it wasn't anything in my digestive system. So ended up doing an endoscopy. No notable findings there either.
So never been given any kind of ideas of things to try other than keeping a food journal, which has been useless to me.
for allergies most doctors are utterly useless. they either dont know the topic or the tests are unreliable and in the end you come out with no more info than you came in.
Sounds like Oral Allergy Syndrome. I also have it with almonds and stone fruits.
Sudden loss of appetite, followed soon by nausea, and then vomiting.
Since you seem to be either a doctor or some other kind of healthcare professional can I ask what would you prescribe for aching butt?
Cortisone
do you mean, if there is no reaction to 1/1800th within minutes(?) then try 1/900th, lather rinse repeat?
Correct. The specifics are in the second page of this doc: https://onlinelibrary.wiley.com/action/downloadSupplement?do...
The intervals start at 10 minutes (start of day 1) and go to 90 minutes (start of day 3).
The dosage increments (in mg of cashew protein) start at 5x, but are mostly 1.5x or 2x.
Ok I’ll bite - Wouldn’t have guessed it necessary to bookend a comment with all caps disclaimers, yet it’s happening, so I’m going to guess you have an interesting or cautionary anecdote around it we can possibly learn from?
Nope. Just being cautious!
With. First they did a blood test (instead of a scratch test) to identify possible allergy levels. Then the allergist had us come into the office to take e.g. a few micrograms of peanut powder and watch him for reactions. Then we maintained the dose at home every day for the next couple weeks, taking zyrtec with it to avoid hives, etc. Then we'd go back in, try doubling the dose as a challenge. If he had a bad reaction, we stayed on the same dose another few weeks, and if not, it became the new standard level. Rinse and repeat for about a year until we got to 2 peanuts, 1 cashew, and 1/4 tsp of tahini, which we maintained now for the past ~1.5y. We're due for another blood test and challenge here soon, as the allergist suggested there's a small chance that the immunotherapy could result in the allergies essentially receding
Our son is allergic to nearly everything (peanuts, nuts, dairy, eggs, sesame, wheat) and we haven't found an allergist willing to work with us. Do you know if there's an age factor for immunotherapy effectiveness? He's 2 1/2 yo.
2 1/2 is right in the window, with the general consensus being that the earlier you start, the better the results. Studies found the best results with 1-year-olds, then it exponentially decreases with each year, until there's little benefit with 4+ year olds.
We did it with Latitude [1], with the support of our allergist, who had sent his son through them with successful results. It's not covered by insurance, and is expensive in all of time, money, and attention. The field is very new and data is still sparse - our allergist actually was very curious to hear results because he's adapting his practice as new data comes out from actual treatment.
[1] https://latitudefoodallergycare.com/
Age is a known factor for oral immunotherapy’s risk and effectiveness, and the commonly cited fuzzy threshold is starting before 2 years of age. The data isn’t that strong, but “start very young” basically has practitioners’ consensus.
You have to shop around for allergists willing to do it. Our first allergist told us they weren’t comfortable doing it but it was becoming an increasingly popular option and referred us to several allergists who did it. We’ve also spoken to allergists who were bearish on it. It’s because there’s very little published data.
In Israel this is done naturally by feeding children Bamba, a puffed peanut snack, at a very early age. Research shows significantly decreased levels of peanut allergy.
https://www.npr.org/sections/thesalt/2015/02/23/388450621/fe...
Bambas are recommended in the U.S. as well, but our kid entered anaphylaxis after eating just 5 bambas his first time, at about 6 months of age. It's certainly possible to have a peanut allergy despite early exposure. Recommendation in the U.S. is now for pregnant women to eat peanuts to expose the fetus in utero, but even this doesn't always work.
Kid is desensitized now after a year of oral immunotherapy, so add us to the chorus of voices saying "It works", but it can strike early and severely despite the parents' best efforts.
It's not just about early exposure to allergens, it's also early exposure to pathogens. There's a growing body of research that constant disinfection of hands and surfaces is what really caused the allergy outbreak. Humans need to prime their immune systems with exposure to pathogenic bacteria at an early age so that it can learn to fight them and not other substances which leads to allergies.
Careful, that's not really been proven. There's an enormously important difference between these two hypotheses:
1. The individual human immune system needs to be calibrated by wider exposure to actual pathogens.
2. The individual human immune system needs to be calibrated by wider exposure to benign bacteria that we've co-evolved with. ("Old friends.")
The treatment plan each suggests is very different, with different risks, and there is no guarantee the riskier option will give you better results.
Yeah, we hadn't heard of this when our son was born, but the allergist mentioned it. When our daughter was born, we gave her something like this at his recommendation. The ones we got were some puffs that have a whole pile of allergens in tiny doses. Causation vs correlation and all that, and a small sample size, but our daughter doesn't have any issues with any allergies.
The economist Emily Oster wrote an excellent series of books about pregnancy anf early kid years, where she dives into details about various studies, whether they are causal, etc. It's one of the best practiacl explainations of reading research I've encountered targeted at non-academics, really well done. She has a chapter on peanut exposure allergies and i think inrecall that these early-exposure results are in fact from causal research vs just correlational research (basically there are at least two types of papers out thwre -- correlational and causal. As you might guess causal is harder to get for many reasons). Great books; she may also have published some chapters on her substack (substack came after the book I think).
I realize as I write this that you are probably saying that for your own experience you can't disentangle correlational from causation, to which I would say -- correct!
Emily Oster is a national treasure that is still flying under the radar for most people.
As above, she presents excellent science in an approachable manner for non-science minded folks. She also has enough of the technical details for this with the knowledge to be confident she has done a strong analysis.
If you are a parent and haven’t checked her stuff out, please do. (Zero affiliation or connection)
If you live in the USA and have eastern-european or balkans shop in your area you can buy "smoki" which is essentially the same thing.
Or you can order it from amazon:
https://www.amazon.com/Smoki-Peanuts-Flavored-Snack-Pack/dp/...
To continue the message of availability…
Trader Joe’s in the US has both regular Bamba and chocolate-dipped Bamba. These are sometimes in different parts of the store.
People mention this quite often to me because my toddler is on oral immunotherapy for peanuts, and there’s a small but important distinction here. It’s extra important when relatives start to think it’s okay to be casually leaving peanut products lying around within the toddler’s reach. (It’s not)
The general consensus among allergists is that early exposure reduces the chances of developing the allergy in the first place, but people on oral immunotherapy are still allergic, they just have a high tolerance and can still have anaphylactic reactions. Some will outgrow the allergy, but for peanuts most don’t and the data doesn’t yet exist for whether peanut oral immunotherapy increases the likelihood of outgrowing the allergy.
There are some early studies out [1] that indicate remission is possible with OIT. (For laypeople, "desensitization" ~= can tolerate some peanut exposure without a reaction, but still needs to carry an epipen and remain on the maintenance dose for life, while "remission" ~= no longer has a peanut allergy). The numbers were 71% desensitization and 21% remission for OIT vs. 2% both for a placebo. It was heavily dependent on age, with 71% of 1-year-olds, 35% of 2-year-olds, and 19% of 3-year-olds achieving remission.
Data will be scant at this time, because the full treatment takes a long time and needs to be adhered to closely. It's 30 weeks of OIT, followed by 2 years of a maintenance dose, followed by a 6-month hiatus to verify whether the maintenance dose can be stopped while still achieving remission, so data necessarily lags the start of any clinical trials by 3+ years.
[1] https://www.nih.gov/news-events/news-releases/oral-immunothe...
It’s sad as well.
The original studies on peanut allergy and bamba in Israel came out many years ago.
It’s taken people so long in the US to learn about the value of introducing small amount to babies at a young age to protect them.
I can only think of the many families and children who have been negatively impacted due to the lack of awareness and understanding in America.
I thought there was a study that suggested the weapon of first resort should be breastfeeding mothers eating the allergen-triggering foods so the kids get exposed to them indirectly.
Makes me wonder if there is something we should be doing with baby formula.
What are they saying? They don't believe in oral immunotherapy?
They tend to be critical against immunotherapy in general, if it's not for those allergies where the therapy has a good chance of working and is without risk. Otherwise avoidance of the allergen is preached. We encountered that with a cat hair allergy, treatment was refused.
whats the point of the allergist then?
My question exactly.
To be fair, for hay fever the therapy was offered. And reading it up back then, the treatments against animal hair are often not successful, and they have a certain risk. Plus no standardized medication, so there are problems with keeping the exact dosage needed. All that combined made me conclude that not wanting to lead such a treatment is not a completely unreasonable position for a doctor. One would have to find a doctor specialized enough to do it anyway.
For cats, just feed them egg from chickens that live with cats, as the egg has antibodies against the allergen in cat saliva, and the egg will cause those to get neutralized before the cat spreads them to its fur.
There are commercial products for this that have such egg powder.
It seems that is basically the same mechanism as the Purina Live Clear cat food? That one we tried, and did not notice a definitive effect. What did help was keeping the cats out of the bedroom, and later being pregnant removed the allergy so far almost completely for her ;)
The purpose of a system is what it does. If they make money by identifying allergies and then treating those people for those allergies, as opposed to parents giving their children 2 peanuts a week, then their livelihood is under threat.
If kids were left to get dirty and put the occasional thing in their mouth, which kids have been doing since the dawn of time, then there wouldn’t be such an allergy problem
I find that view to be overly pessimistic, and not reflective of what health care providers actually do. Practitioners of all sorts work hard to cure and prevent diseases every day. Every time a cancerous tumour is removed, it significantly reduces the chances of that person needing follow-up care. Every vaccine that is given reduces future hospital visits. Every piece of good advice to exercise and eat right keeps somebody away from the doctor, rather than turning them into a repeat customer.
Doctors aren't evil. They aren't scheming to lock patients in by offering suboptimal treatments. They provide the best care that they're able, within the limits of the knowledge and resources available to them.
I’m not saying the individuals are evil or making any moral claim at the individual level at all, I’m talking about the system and the behaviours that are incentivised.
Even if they believe it, there's a list of treatments and procedures for each diagnosis that insurances are required to cover and oral immunatherapy might not be on said list.
Is health insurance a common thing in Germany? Don't they have universal health care?
Universal Health care is via public health insurance.
You can pick from several public providers, but the price is basically fixed and deducted directly from your salary/payed by the state if you’re unemployed.
There is a 2nd system of private insurance providers. Those tend to get you preferential treatment at doctors because they pay them more than the public insurance which has fixed rates, but they will hike prices as you get older and you can’t go back to the public System.
Is this effective and available for milder chronic hayfever and runny,partially blocked nose, generally speaking?
I've heard that consuming honey from your local variety of bees can help - but the evidence base isn't great [1]
[1] https://www.honeyshoney.co.uk/blogs/news/local-honey-and-hay...
This is nonsense. It doesn’t work.
I think this myth might stem from people not getting hayfever, moving away from where they grew up, and then suddenly getting hayfever and attributing it to where they moved to. But the truth is it just can be (frequently is I believe) adult onset (20s very typical I believe).
At least, that was my experience, I blamed Cambridge, then moved back or even when I visited before that had it just as bad in the town I grew up in. (Cripplingly painful eyes, sometimes migraines. Nose generally fine, but steroidal nasal spray is the best I've found off prescription for my eyes. Eye drops only really seem to help by way of lubrication for me (even though they are active), and pills (best I've tried is fexofenadine) don't give that instant relief.)
I visited my local allergist for this (in the USA). Basically the treatments available to me were either shots or eyedrops. The shots required visiting the office almost daily, then weekly, then less frequently. The eyedrops can be self administered. I was told both treatment options are not permanent and need to be basically done in perpetuity. The cost was a couple thousand dollars per year (basically no insurance coverage).
Seems like the treatment options are evolving pretty rapidly and these options aren't available everywhere. Or this is what I was told.
You were told wrong. Shots have a ramp-up period and then a five year maintenance period where you get one shot a month. Afterwards, you've effectively been cured.
A friend just started the shots and there was no ramp up, he's getting the shots every four to six weeks from the start. When I looked into it ten years ago, you had to come in weekly for a long time, which discouraged me from doing it.
My hayfever is mild. Since some years ago, I chew some grass ends, mostly at the beginning of the season. I do seem to get much reduced symptoms compared to what I used to get. But of course I can't be sure it's causal. I have completely stopped taking antihistamines.
Yes, my girlfriend gets allergy exposure shots for cat dander. It's stupid expensive and time consuming. You will meet your insurance deductible for several years. The outcome is only somewhat good as well.
Yes it is: https://www.aok.de/pk/magazin/koerper-psyche/haut-und-allerg...
I heard that you can choose between pills every day for a prolonged period OR three injections over a year. Not sure how accurate this is, but every "allergologe" provides this in Germany.
I asked our allergist about oral immunotherapy for my daughter and he cited a study that found that avoidance was more effective in preventing severe reactions.
I mean, avoidance is more effective than vaccination in preventing you from getting the flu, but that’s not the point of getting vaccinated.
So there’s one factor that doesn’t get discussed much: adherence to a fairly draconian treatment regimen for “forever”. Our allergist screened us for whether they thought that as parents we had the resolve and diligence to figure out a way to get a baby/toddler to eat a full teaspoon of peanut and cashew every single day. And as any parent can tell you getting them to eat a specific thing every single day is non-trivial.
Oral immunotherapy seems to be very effective but sticking with it is nontrivially hard.
We asked about swim lessons and were told avoidance is the best way to prevent drowning.
This type of advice makes sense in an absolutely litigious risk free training context.
Seems like a problem when avoidance goes even a bit wrong though. :(
Wow that is really good to hear. I am on immunotherapy for a different type of allergy and can't stop talking about its effectiveness. It has been life changing.
I did a whole immunization against dust mites and I feel like it didn't work at all. q.q
I've been wondering if there's something else causing me to be allergic to them, like something I eat or so, idk. But I'll have to get tested again
As a child I was diagnosed with a dust mite allergy too, but much later found out I’m actually allergic to certain pollen and cats.
I do a skin prick test every year and make sure I update allergens. It takes about 6 months to see the results and whole treatment could take upto 3-5 years. I took a break from the treatment during covid and the allergies came back. So it is important to get monthly shots.
If you are willing to say, what was your son’s peanut allergy level?
One of our sons is 6/6 on peanuts and they were very hesitant to try oral immunotherapy, more or less saying they weren’t willing to given the risk of anaphylaxis.
I don't remember for sure, but I'm pretty sure it was 1 below the max level. I seem to recall it was on a scale of 5 with our test, but it might have been on a scale of 6
We did this for our son (peanuts and cashews) and it was also life changing. He’s on a daily maintenance dose for life, but we no longer fear the possibility of either allergen being near him in public places or cross contamination in food. He still has to carry his epipen, but now the prognosis for “oops he ate something with peanut in it” is no reaction at all until he’s several peanuts in. He’s not cured and can still eat his way to anaphylaxis with a bag of peanuts, but he can take a few bites out of a PB&J sandwich and nothing will happen.
One detail in particular makes a huge difference: oral immunotherapy seems to be significantly more effective in babies (starting before age 2) with significantly better outcomes. Adults and young children have a much higher incidence of side effects (most common one is a constantly upset stomach) that makes avoidance potentially still better for overall quality of life, but our allergist told us that among their <2 year old cohorts they’ve seen zero out of [upper two digits] experience any of those side effects at all. We started our son when he was 1 year old.
In our case the kid started eating peanuts basically as soon as they started eating solid foods, so the allergy happened despite early exposure. Actually we caught the allergy early enough to start OIT early because of early exposure.
Our daughter too, she’s been on a maintenance dose equivalent to two peanuts, once a week. It’s been life changing. She’s had several trips to A&E before the treatment but after a few years she was able to tolerate a dose equivalent to ten peanuts (although that still made her quite nauseous).
Me too. My younger sibling, as a child, had (and still has) allergies (at the time, peanuts, tree nuts, eggs, sesame & sunflower). About a year, maybe 2, after starting to eat small amounts, they could do sesame, stovetop (!!) eggs, and nut butter. The problems went from 'allergic reaction' to 'won't eat the eggs and nuts'. (I think at one point the solution was pancakes with nut butters and sprinkles. Kid still had a hard time eating it.)
I don't know why it's taken so long for this to gain broader acceptance.