Obviously everyone's mileage will vary, but I'm happy to see this treatment being more widely adopted
Obviously everyone's mileage will vary, but I'm happy to see this treatment being more widely adopted
https://www.npr.org/sections/thesalt/2015/02/23/388450621/fe...
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.
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.
Careful, that's not really been proven. There's an enormously important difference between these two theories:
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" [0].)
Those involve very different plan of treatment and associated risks, and there's no guarantee the riskier one will give better results.
[0] https://www.news-medical.net/health/Old-Friends-Hypothesis.a...
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.
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...
Or you can order it from amazon:
https://www.amazon.com/Smoki-Peanuts-Flavored-Snack-Pack/dp/...
Trader Joe’s in the US has both regular Bamba and chocolate-dipped Bamba. These are sometimes in different parts of the store.
Makes me wonder if there is something we should be doing with baby formula.
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!
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)
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.
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
Oral immunotherapy seems to be very effective but sticking with it is nontrivially hard.
I wouldn’t tell you to not trust the advice of your doctor. But I would tell you that there is an always argument both ways for something like this. A different doctor may feel differently, and sometimes doctors change their minds when given a bit of pushback. It might be worth asking about the possibility of oral immunotherapy in addition to avoidance, rather than as a substitute for it.
What are they saying? They don't believe in oral immunotherapy?
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.
whats the point of the allergist then?
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.
There are commercial products for this that have such egg powder.
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.
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.
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.
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
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.
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.
do you mean, if there is no reaction to 1/1800th within minutes(?) then try 1/900th, lather rinse repeat?
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.
I don't know why it's taken so long for this to gain broader acceptance.
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.
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.
[1] https://www.honeyshoney.co.uk/blogs/news/local-honey-and-hay...
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 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.