Friday, March 1, 2013

Milk Allergy Cure: Glass Half Empty, or Half Full?

So there's been a lot of press coverage coming out of the AAAAI meeting about how OIT is not ready for prime time. Of course, it's nowhere near the volume of THERE'S A CURE FOR PEANUT ALLERGY headlines that hit when they started the therapy several years back, and it will probably take another 10 years before acquaintances stop coming up to me with printout off the internet that seem to imply I'm just not trying hard enough to cure my kid's allergies...but I digress.

One of the best summaries I saw was from Science News (love those guys!). The article led with the bad news:
Researchers at Johns Hopkins University report that many children have seen their allergy return several years after completing a similar regimen of what allergists call oral immunotherapy. “I think they’re not as protected as we were led to believe,” says Robert Wood, an allergist at Johns Hopkins who reported follow-up data on 32 patients.
However, the next paragraph gives the stats for all milk OIT trials:
Of the 280 patients treated for at least seven months, 160 were able to consume 7,200 milligrams of milk protein, the equivalent of about one-fourth of a liter of milk, without a reaction by the end of the study. “They are eating freely all dairy foods,” Levy said. Another 66 patients who finished the treatment can handle smaller amounts of milk regularly, and 15 are still working through gradual escalations.
I think it's interesting that the coverage of these trials has mostly been negative. Perhaps it's backlash from the (unwarranted?) hype that went before. Perhaps it's because the researchers don't want this therapy to be tried in physician offices without appropriate rescue meds/equipment on hand. 

I looked at it and said "Geez! 60% odds of outgrowing! Sign us up!" 

But here's the kicker:
In the other analysis, which included patients from two previous smaller studies, Wood reported that only eight of 32 children who received treatment three to five years earlier at Johns Hopkins were still free of symptoms when ingesting milk. Five can’t touch it, and the rest have occasional to frequent reactions to milk, Wood said. 
So...over time, a treatment that looks like it's successful can suddenly unravel, sometimes with a big reaction. Some subset of kids can end up more sensitive, with a lower threshold than when they started. Plus, during the treatment, they were far more likely to have serious reactions (almost 1 in 10).

SLIT (under the tongue therapy with very low doses of protein) also had some success, although more modest:
Dr. Thompson pointed out that [a parent's choice about which therapy to pursue] depends on the goal of therapy. "If your end point is to have someone consume milk and peanuts regularly, then you might try the oral, but if you're just trying to keep them from having an unexpected severe allergic reaction, then you should probably just go with sublingual. This is often good enough for most parents. They don't care if the kid can eat peanuts, they just want to make sure that if he eats something by mistake or sits at the nonpeanut-free table, he's going to be okay," he explained. get to Choose Your Own Adventure with this one:

If you're a glass-half-empty person, you might conclude that all these therapies have risks and that it's not worth it to go through something, let down your guard, and then have your child suffer a bad reaction, perhaps followed by a lower threshold.

If you're a glass-half-full person, you might conclude that the 6-in-10 odds in the first study, and the 1-in-4 odds in the second one, are still a pretty good bet to not have to live with milk allergy. And, if it goes bad, perhaps there will be a new therapy like Xolair or FAHF-2 that can make things better.

If you're a researcher, you probably look at all this and think: whoa! Are food allergies like cancer, where each person's fingerprint is slightly different? Are there other factors that are working in conjunction with tolerance, such as pollen load, hormones, time of year (which might affect Vit D uptake), or environmental pollutants? Did some kids outgrow because of who they were genetically? Or did some kids remain tolerant because of what they did environmentally? Did the therapy re-educate the immune system and then it regressed for some reason? Or was the immune system not changed at all and the kids were desensitized, not truly tolerant?

Tucked away in the tweets from the meeting was this little gem:
Clinical phase I trials of FAHF2 showed that is probably safe. Phase II trial is underway but requires 30 pills/day!
"Probably" safe? Just a reminder that all these little adventures have no guarantees. So far, we're very happy with the FAHF-2 road-less-traveled, but only time will tell.

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  1. I was following all those tweets too, and while I am normally the glass-half-full Mom all the way, combined with the ana rxn my son had last week (he self-administered the Epi before I arrived!) I am second-guessing even our baked milk. While we haven't been following a specific protocol, and we've stopped and started due to the development of EoE, it appears that even after 2.5 years of those cupcakes, there has been no benefit. Of course, we have NO idea what caused last week's reaction - it might have been tree nut (I doubt it ... he has never had an accidental exposure to nuts, only milk). Whatever it was, it must have been a tiny amount of cross-contamination somewhere - unless it's a brand new food causing exercise-induced (it happened 1 hour after supper during a sport). After he did almost everything right last week, it's left me with a bit more comfort knowing that he CAN handle himself in an emergency. If our appt with the allergist this summer shows some miraculous leaps forward, then maybe I'll change my mind. But for now, I've stopped even the baked milk. With the EoE and now this rxn, he's been through enough. Time to take a step back...

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  2. There was another tweet from allergistmommy: There also existed a risk of severe reactivity in those patients who temporarily halted OIT due to viral infection. #AAAAI

    I thought this was interesting, as my son had a mild cold earlier that week and I HAD stopped the baked milk about 6 days prior to his reaction so as to not confuse his runny nose with allergy symptoms. I know baked milk and OIT are not the same thing, but they also kind of are .... the objective is the same with both, but my son would never qualify for OIT with his history.

  3. It's so hard, isn't it? What feels like progress may just be wishful thinking. On the other hand, I've read that baked milk definitely increases the odds of outgrowing significantly. It may just take a good, LONG while.

    Give him a big high 5 for self administering though! I think people underestimate just how hard this is for kids. They really pushed at the clinical trial for my son to do it himself with an autoinjector (vs. pushing meds through the IV), just so he'd have more experience.

    ~~Breath in~~ breath out~~ give yourself time to get over the reaction, and then decide about the baked milk. As you say, may not have even been related.

    This stuff sucks.

  4. I'm confused by it all. My son's allergist does not believe in using baked milk in increasieng doses leading to less and less baked milk and progressing to actual unbaked milk products as other places advise people to do. I have friends who have children who are no longer allergic to milk by following these protocols. My son's allergist thinks of this as at home desensitization and doesn't want us doing it. I have been feeling we should be doing so, too, even though our allergist recommends against it, seeing these others go from highly allergic to no longer allergic to milk and also some to eggs. My son's allergist feels that we should figure out what types of milk our son can tolerate and give him those. So, before switching to any other form of milk other than very baked we are supposed to skin test and then in office challenge. 85% of kids outgrow milk and egg (or close to it) so does baked milk help this or do those who would outgrow anyway do well with it? I don't know.

    Garden Girl

  5. Garden Girl, no one knows. That's why it's a "Choose Your Own Adventure."

    One thing that seems clear (at least to me) is that total avoidance isn't helping. This generation of kids has more severe and longer-lasting milk and egg allergies. Perhaps that's because the nature of their allergies has changed due to some environmental factor, but it may also be because we've been more careful parents and have limited the casual and/or baked exposures that our mothers did not.

    I really think allergists are backing off from giving much advice at this point because the studies are showing that they may be doing harm for some kids with OIT. But yet -- others clearly are benefiting from it and becoming tolerant. Which one is your kid? Who knows until you try?

    Frankly, using baked milk for us is less about outgrowing and more about having more food choices. My son is 18 (18!) and is still as allergic to milk as ever, so we need to take what we can get at this point.

  6. Here's the research study:

    Does it last? No one knows.

  7. Although most of my daughter's allergies remain, she has outgrown has egg allergy. She had a serious reaction the 1st time she ate eggs. We were living overseas at the time and there were no allergists where we lived so she saw a dermatologist. I don't think he knew a whole lot about food allergies. We were told not to worry too much since most kids outgrow. Definitely not told to be super careful. We engaged in what I know now to be high risk behaviour - decided at home to feed her baked egg one day to see what happened (she was fine). After that, used to let her crack eggs when we baked - she would usually end up with hives all over her hands and hives all over her face if she then decided to touch her face. We would scrape eggs off her breakfast plate at a restaurant and give it back to her. We just didn't know what we didn't know. When we returned home, we were read the riot act. I have wondered in the past though if this high risk behaviour made her 1 of the only 4% who outgrow by age 4??? Maybe the whole 'what doesn't kill you, makes you stronger' thing applies here??? I would never have the guts?/stupidity? to do this now that I 'know better' but can't help wonder if not knowing better helped my daughter outgrow. She still have a +RAST and +SPT for egg but has passed an egg challenge and now eats eggs all the time with no problems.

  8. I have wondered the same thing (and written about it a couple of times). The parents who just take the cheese off their kid's pizza seem to have kids who outgrow faster.

    You gotta go with what the doctors say though. For every 99 kids who do well with it, one will have a big problem.

  9. I'm just curious... has anyone tried sauerkraut to cure dairy allergy? It's way past my bed time so I'm sure this question has been asked and/or answered somewhere. But I'm having such trouble finding any information about it.

    Had a holistic referral to try this approach on my not-quite 2 year old son. Was wondering if anyone has heard of and/or tried this as well.

    Please advise, if so. Thanks!

    1. I don't think it does, by itself. My son (now 4) had sauerkraut for nearly a year in his sandwich. He has had many dairy reactions after that. I stopped because he got bored of it. But we are trying nanoSRT now. The chiropractor recommended a gut treatment which also includes probiotics in addition to other herbs and zinc. We will see how that goes. If my son gets cured of his dairy allergy, I will let the whole world know. He can't touch milk.

  10.! Never tried it, never heard of it.

    Do you have any idea why she would think a common food would have any impact on an allergy?

  11. Not sure. He's a holistic doctor who is very involved with using nutrition to cure. I'm going to give it a shot since it won't hurt for him to eat it. Just was curious if anyone had heard of this. Thanks for replying!!

  12. Well...interesting. I looked a little further and it does look like sauerkraut has a pretty rich bacterial environment:

    I'm no longer willing to just discount this stuff, given my belief that food allergies are tied to changes in gut flora. As you say, it couldn't hurt!

  13. Wow!! Thanks so much!! That's really encouraging to me since most people are so stand-offish and write off anything that's uncommon.

    Thanks for finding this document as well. You have no idea how much I truly appreciate your approach and response.

    By the way, he recommended Bubbie's only. Not sure why, but seems like I enjoy eating it which is pretty surprising, so maybe it's just an easier one for little people to eat.

    Thanks again!!!

  14. Just found your blog. I have a 12 yr. old dd w/severe milk allergy. If you touch her with it on your hands, you will leave a hand print of hives. Any ingestion causes itchy mouth and soon she vomits, emptying her entire stomach. Always carry an Epi, but thankfully haven't had to use it.

    My questions: 1. To the mom asking about sauerkraut - what's the protocol? How long does the child have to eat it before the milk allergy is gone? How much does the child have to eat? etc.?

    2. Has anyone tried baked milk in small doses and increasing to try to desensitize? We are considering this. Currently our dd is allergic to any form of milk, and doctor just keeps saying stay away, but yet with an IgE of 56 each time, she's not improving on this path. We're ready to try something else. Can't seem to find an article showing what amounts have been given of baked milk and how much they increase it and how often. All the articles I have found talk about giving regular milk. We're not wanting to try regular milk. But baked milk would give her many more foods to eat.


  15. Candace, take a look at this post:

    It has some links to protocols for baked milk. You'll see that many kids can tolerate baked milk, even with touch allergies, even with high IgE. However, you should be doing this with the assistance of your doctor (or *a* doctor). You may need to call one of the research hospitals to find someone willing to do this with you.

  16. Candace,

    As the mom asking about sauerkraut, I've since researched and asked a few more questions. First, the holistic doctor recommended giving him one teaspoon per day. Keep in mind that this is through a friend of ours who was asking (without our knowing) on our behalf. I'm willing to try it for as long as possible considering that it's a low-risk option that could provide great rewards.

    Second, as was previously mentioned in the comments here, it seems that there is a link to these types of allergies and gut flora. I researched the GAPS diet, having been asked by no less than four different people in different settings if I had looked into it and/or tried it. I will say that the GAPS diet is super-intensive so I won't do it unless I am strongly encouraged to do so by a doctor (holistic or otherwise). Having said that, I'm definitely not pursuing medications at this point but am hesitant to pursue desensitization since he still doesn't talk and can't tell me how he's feeling. If we're still dealing with this as he gets older, then I might try another way, but for this home, even if he does outgrow his allergy, we'll still be at least vegetarian with strong leanings towards vegan (me for health reasons and hubby has dairy issues as well).

    On a side note, we found out through two mistakes recently that our little guy is actually more severely allergic to eggs (gave him hushpuppies) over dairy (gave him Chick-Fil-A nuggets). With the eggs, he had trouble breathing first along with hives. Then he vomited violently about eight hours after ingesting. With the nuggets (dipped in milk before breading), he vomited only about four hours after ingesting. I hate that we made these simple mistakes but I'm glad that we're learning as we make them.


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