Friday, March 7, 2014

Life After Food Allergies

OK, so that post title is a little hyperbolic. My kid is still allergic to peanuts, and possible hazelnuts, lentils and some varieties of beans. (Doing a home black bean challenge today.) But really, I've felt over the last week like a HUGE burden has been lifted.

I think my son feels relieved as well, but what I've mostly been noticing is the anger. He's a really easy-going, loving kid so when he says things like "I'll try not to die" when I ask how things have been going, it's obvious that he's dealing with some simmering resentment toward my overprotectiveness and probably toward his allergies in general.

When we were at the food challenge last week, I did float the question out there to his allergist: If his numbers are still high, yet he passed, is it possible he outgrew this allergy years ago? It was a very impolitic question and she squirmed a little before answering that everything has its time and we should just be grateful. But I know it's what you all want to know: was this kid truly allergic to all these foods and the FAHF-2 really helped? Or were his parents and doctors just really overprotective and doing food challenges that should have been done years ago?

I don't know.

What both our regular doctor and the doctors at Children's Memorial told us is that RAST numbers do matter for most kids. Our kid just appears to be the exception. His RAST for peanut going into the study was <1, just barely over the qualification threshold. Since the trial, it's spiked back up to something like 10 (having trouble finding those results but will post the actual number if I find it).

Regarding milk: his last reaction requiring a hospital trip was around age eight. My husband and I have been racking our brains this week, trying to remember other reactions to milk after that point. While there were many mild mystery reactions over those years, neither of us remembers anything serious that could be definitively attributed to milk. Thanks to my husband's amazing record-keeping, I do know his RAST results over the years for whole milk:

2003: 11.3 (class 3) - level year of last known anaphylactic reaction
2007: 7.62 (class 3)
2012: 5.71 (class 3)

Yes, those numbers are low compared to some kids. Yes, the numbers have dropped over the years. However, he's never been lower than Class 3 for milk and has had anaphylactic reactions. Where was the magic perfect testing point? As I've noted in another blog post, the Mt. Sinai recommendations are very aggressive, indicating that even children with known severe reactions should be evaluated for tolerance every 24 months.

So...like you, we were in the position of second guessing our doctors. To be fair, the research about adding baked milk to the diet to speed tolerance is new information, but should we have pushed harder for these challenges?

My son's last known soy hospital trip was 2010. Here are the soy numbers:

2003: 12.0 (class 3)
2007: 2.81 (class 2)
2010: anaphylactic reaction
2012: 1.18 (class 2)

Where was the magic moment for soy?

His last RAST in 2012 for black bean was 3.02, class 2. We are doing that one at home today.

During the Children's Memorial screening for the clinical trial, they ran hazelnut to see if they could use that if he passed the challenge for peanut. That number was ~12. The doctor wants to do a food challenge this summer for it and has every confidence he will pass. Apparently she agrees with us that numbers have stopped mattering much for this kid.

This post has become all about the numbers and that's fine...I know that's what a lot of you are interested in knowing. I would have wanted the same thing in your shoes. I would have scoffed at reports of a food allergy cure and assumed the parents just weren't aggressive enough about the diagnosis or resolution of the food allergy involved.

There is clearly more going on with resolution of an allergy than a drop in test numbers. Unfortunately, that's probably the only thing that's clear. Some have pointed to a rise in IgG4 as a more telling diagnostic criteria, or decreased basophils. Perhaps total IgE has to be taken in consideration when evaluating the likelihood of passing a challenge. We were not privy to the results from the clinical trial so I can't share those numbers, but perhaps they will be published at some point.

While we were doing the milk challenge, we talked quite a bit about the clinical trial. I expressed my frustration to my doctor about the delay in any results. Her response was not reassuring: "Often when there's a delay, it means they got mixed results. They may not publish at all." It may be that this medication will not work for everyone. It could even be that it doesn't work well for anyone, and that my son's experience was unrelated to the medication.

I'll write more later on how things are going (he's doing great and eating everything with no problem). But until then, here's an appropriate song:


Addendum: my husband did dig out and send me the clinical trial results. For those of you who have asked, here are the really technical numbers (which, frankly, I don't understand completely so I can't explain):

Basophils: 0.050
Eosinophils: 7
Total IgE: 851 (a significant drop from the last study)
Total IgG: 962

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35 comments:

  1. May I ask how long your son was on FAHF-2, total? I believe the trial was 6 months, but I was wondering if he continued treatment, once the 6-month period ended.

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  2. He was not given the option to continue the medication - it was only six months. However, the mouse studies have shown that the medication continues to have a protective effect after it's discontinued (although no one knows how long it lasts).

    We were told he might have the option to go back on it once the trial wrapped up if the results were positive, but so far we have not had that opportunity.

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  3. Hi FAB,

    Thank you SO much for the detailed info! Really great information. Would it be at all possible to list out any food challenges that were "fails" (to any degree) a year or less prior to taking FAFH-2 that have since become non-reactions when consumed?

    I am totally with you that RAST numbers are only 1 piece of the puzzle and their elimination is NOT the only way to prevent an allergic reaction. If it is possible to prevent basophils from engaging the IgEs (which is called preventing "basophil activation"), then that also does the trick--which is the mechanism purported by FAFH-2. I think this is because when enough basophils interract with an IgE, the IgE bursts and releases the histamine. From our research, FAFH-2 has not been shown to eliminate the IgEs (but rather to limit the rise of IgEs in the event of exposure).

    Thank you, thank you, thank you for posting the post-FAFH-2 addendum numbers. If you get a chance, it would be very, very appreciated to know those 4 numbers some time (just) prior to the FAFH treatment.

    From out research, a drop of 50% in eosinophils and basophils is a sign of the effect of FAHF-2.

    Thank you so much FAB! We were in a very dark place when we learned about FA the hard way. Your blog is a literal light in the dark.

    Best,
    Shylock

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    1. Shylock, I am interested in knowing where you got your info on FAHF. I would love to know more! I tried to click on your name and message message you but it didn't work. ,

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    2. Shylock, I'd love to help, but we have only the one set of numbers from the trial and our regular doctor does not track all the esoteric blood cell counts - it's strictly a research thing. The numbers I listed were at the end of the study - again, we don't have visibility to what they were before. The only number I do remember from previous tests was his total IgE from the clinical benchmarking trial we did in 2008, which was around 5000. That has dropped considerably.

      The only food challenge he failed was green pea in 2007. And, as I said above, he essentially failed a soy challenge in 2010 when I accidentally bought soy instead of coconut ice cream and he ate it. He did have significant wheezing with that reaction and I did give him an Epi and take him to the hospital. Otherwise, no doctor-supervised challenges (other than 3 intentionally-failed peanut challenges during the trial).

      I'm afraid you're going to have to wait for the publication of the research results to see more detail.

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    3. Hi FAB, thanks for the clarification. So, for me, like you, RAST is not something I am that interested in (although the general drop has to be a good thing). I will wait eagerly to know if the expected 50% drop in eosinophils/basophils was repeated again in the Phase 2 study and, of course, if the treatment generally was shown to prevent anaphylaxis--which I think is the primal goal for parents of FA children--although I am sure having the enjoyment of cheese and dairy is even more wonderful. :) I will, impatiently, wait for the results. Thanks for all that you have shared--it may very well have been a life-saver--God willing.

      Hi Carrie, my wife and I have read all of the FAFH-1 and FAHF-2 papers (about 4) and a number of related papers, which I why we feel that a 50% drop in eosinophils is generally what to look for to know if FAFH-2 worked--since in the Phase 1 study that was what generally happened.

      We are administering "do-it-yourself" FAFH-2 as a tea for our DS, along with a number of other supplements, probiotics, and diet changes. We are also practicing avoidance, even from oral and skin challenges, so we really obsess over the blood results.

      FAFH-2 is really just a collection of somewhat common herbs (with ginger, ginsing, cinnamon, and sceshuan pepper being some of the more common ingredients). That said, the papers on FAFH-2 on mice, and a number of other basic supplements (like licorice) or probiotics have been shown in scientific studies to perform wonders. It's totally unexpected, which is why we didn't even look into FAFH for a long time. But I am confident that FAFH is the best thing available and effective.

      I hope EoE does not results from overcoming allergies from FAFH. I did read a recent set of articles on kids getting EoE when the recovery from food allergies from the "eat nuts to overcome your nut allergy" approach. That actually makes sense, because eosinphils for that approach. But for FAHF, which acts by reducing eosinphils and basophils, I really doubt (hope?) that would happen.

      Best,
      Shylock

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  4. Thanks so much for posting about your experience! Every time I THINK I understand my kid's multiple food allergies, I really wish I knew more and following your experience with the study does make my head spin a little. I am of course familiar with IgE but I'll admit I have no idea what a basophil is.

    I think we do obsess over RAST numbers for my little one, so thank you for sharing the dates/numbers/anaphylaxis incidents... her milk RAST was 20 a year ago and is now 11, so she's up for a baked milk challenge soon (she has failed two in the past). Yet her egg is at 80, and the allergen for which she has had her worst anaphylaxis and hospital trip, sesame, is at 15. I think I really need to study up on this much more!

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    1. I can answer in basic terms: a basophil is a white blood cell. Like a mast cell, it stores histamine (the chemical that kicks off an allergic reaction). The theory is that FAHF-2 suppresses basophils. That's why it doesn't matter if IgE stays high - the basophils are no longer there to sound the alarm and cause a ruckus.

      Remember that the numbers really don't mean much once an allergic reaction to the food has occurred. It's just how much of the allergen sticks to the lab plate. My son had serious reactions to things where his RAST is essentially zero. The numbers are just to give a sense for whether the allergy is resolving. I'm not even sure doctors have full confidence that this works, as they do not always seem to be tied to the other things that may help allergies resolve (drop in white blood cells and rise in "good" IgG).

      I've recommended in other blog posts that parents look at the numbers for entertainment purposes only. Otherwise, it can be heartbreaking when the numbers drop and the child still fails a challenge. Our doctor's words were probably good ones: it happens when it happens.

      Good for you (and your doctor) for continuing to do challenges! I wish we had challenged all of these well before we did. The thinking changed over the years, but a lot of doctors are still in the mode of RAST being essentially zero before they'll try a challenge. Are you guys doing baked milk?

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    2. Not doing baked milk at home yet because she failed two previous baked milk challenges (hives halfway through one muffin the first time, and even worse hives a year later when we tried again). She failed baked egg too.

      We go to Mt. Sinai and they definitely are not waiting for her numbers to drop to 0 before we can challenge foods. She passed challenges to peanut, almonds, coconut and shrimp at age 2 and those four foods really expanded our options! (That said, they were probably false positives to begin with, says our allergist. But still!)

      After baked milk, hoping to challenge hazelnuts and cumin... those are the others where her numbers are low enough to give it a shot.

      Still a restricted diet avoiding sesame, egg, milk, tree nuts (except almonds) and mustard but EVERY little bit of new food is a cause for joy in our house.

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    3. Oh, and after your explanation I went and read the new book about FAHF-2 and now I kinda want to just drag my kid up to Dr. Li's clinic... but she's not even 4. It's hard enough to make sure (and we DO make sure) she complies with all her daily asthma and eczema routines... we'd have to be really creative to get her to take all those pills.

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  5. May I ask what made you guys willing to do food challenges now when you weren't in the past without big changes in RAST? Was it just confidence in FAHF-2 or some other combination of stuff? Would you consider challenging peanut again sometime soon? Would your son want to go back on FAHF again if it was offered?

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    1. Carrie, it wasn't that WE weren't willing to do challenges, but that our DOCTOR recommended against them. He has had past reactions to all the allergens we've tested this year and all still have Class 2 or 3 RAST results.

      After the trial, though, I think we were all curious to see what would happen. One thing the trial did for us was to de-mystify a failed food reaction. I watched my son intentionally fail right in front of me three times. While it was scary for everyone and really uncomfortable for him, it was not catastrophic. It gave us a lot more confidence to push through and see what would really happen. Once he passed soy (something that he had a reaction to in 2010 that involved wheezing and an Epi-Pen), we had more hope that some of the other allergens would also be passes.

      We don't have any immediate plans to challenge peanut as we know he is still allergic. However, we are a lot more confident that he can tolerate trace amounts of peanut because of the medication.

      We do know everything could change. The effects of the medication have not lasted forever with the mouse model. One of two things will probably happen here: he will either stay tolerant because he consumed these allergens and his body got used to them, or he may lose his tolerance at some point down the road. It's also possible he'll develop EoE (that has happened with many kids who outgrow a Type 1 reaction). This is a research drug and we are really aware there are no guarantees. But, for now, we're just taking it a step at a time.

      I don't know whether he would want to go back on the drug. It will probably depend on whether he has future issues. It would certainly be more palatable with the reformulated version that doesn't require 30 pills a day, but it was really difficult for him. (It wasn't a piece of cake for me either, as I got to be the schedule taskmaster.) If he started to lose tolerance for any of these allergens, especially milk, I'm sure he would go back on it.

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    2. Thanks for sharing, FAB. I was just curious what flipped the switch in the allergist' eyes.

      I'm very very grateful for your blog.

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    3. You're very welcome! Honestly, I think my husband and I got a littler pushier because of my son's age, but she wouldn't have gone forward with the challenges if she thought there was no hope. I do think she was curious (she's participated in other food allergy research herself).

      I think this is a very hard topic. None of us want to second-guess our doctors. At the same time, they are not LIVING these allergies. I do think there are doctors who discount how difficult avoiding an allergy can be. Plus, the research on all this stuff is changing monthly and not all doctors are keeping up.

      And then there's the very cynical take on all this: if the kid has a serious reaction as a result of a challenge, there's liability associated there. No challenge = no liability. I would hope most doctors would not have this mindset, but it's not unreasonable to assume many are risk adverse.

      I really hope the criteria for and frequency of food challenges is something the allergist community will comprehensively review at some point. I don't think many doctors see their patients' anxiety and lifestyle as within the scope of their medical practice. That's a missed opportunity..

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  6. Is yours a group practice? I'd be interested in knowing who it is, because we have not found good allergists and now that that what we are seeing Dr Li, We just use our pediatrician for scripts and bloodwork. Our last allergist was horrible. Was not up to date on research at all and got when I asked about the UKnow.

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    1. Carrie, I replied to you on another thread - if you message me privately on Facebook, I'll give you our allergist name/practice. I do try to respect my son's privacy at least a little, although it's hard to claim that after I've posted his test results.

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    2. Ha. I thought I posted that request here, but never got notified and when I looked looked again, couldn't find it. That's why I asked again. Sorry. I didn't expect you to post it here but didn't know how to message you privately.

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    3. You can actually send a message to "Food Allergy Bitch" on facebook. Just go to my page there and click on the message button. (I can't message anyone from the page who doesn't message me first.)

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  7. Hi FAB,

    Hope all is well. One quick follow up question. Is it accurate to say that prior to using FAFH-2 (including testing as far back as 2 years prior), your DS had relatively minor reactions to some things and anaphylactic reactions to some others things--and that after the 6 months of FAHF-2, the things that had led to minor reactions no longer have reactions at all and the things that led to anaphylactic reactions now lead to, at most, relatively minor reactions?

    (Pardon that long sentence.) I'm not trying to be facetious to "prove" that anything was due to FAFH-2, but I am very curious if, as far as we know, if it is expected that taking FAFH-2 is consistent with elimination of anaphylaxis (which was the golden result from the mice studies).

    For our part, the elimination of anaphylaxis would be more than enough for us.

    Best,
    Shylock

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    1. I wish I had a clear answer for you, but I really don't. The only serious reaction my son had in the last several years was in 2010 to soy. He also failed a food challenge to green pea. Everything else during his teen years were mystery situations with mild symptoms where we just watched him to make sure things didn't progress. When we started baked milk dosing, he did have mild symptoms (tingly mouth, stomach ache) to cheese, so we just stuck with straight baked milk at that point.

      He has not had ANY symptoms of any kind that I know of since the FAHF-2. He had no issues with the milk dosing after the trial, and he's now eating almost everything freely (other than peanut, hazelnut, lentils and the beans we haven't tried).

      However, his reactions during the trial were really relatively minor. They never let him get to wheezing or vomiting - it was just changes in breathing and in his throat that caused them to call it. It's hard to tell if the FAHF-2 mitigated anaphylaxis because they never allowed him to get to what I would call full-out anaphylaxis. I'm obviously grateful for that!

      So, to sum up:

      - He reacted to soy in 2010
      - He reacted to green pea during the challenge - 2011?
      - He had mild symptoms to baked cheese before the trial

      After we did the medication - nada.

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    2. Hi FAB,

      Thanks so much for the continue help. So soy, green pea, and cheese are history! And these had all been both mild or strong reactions at least a few _years_ prior to the FAHF.

      For peanut, hazelnut, lentils, and the other beans, it sounds like it is generally assumed that your DS will still have _mild_ reactions to these things, meaning if he eats minimal quantities from accidental exposure, then anaphylaxis is not expected. Is this accurate? And it sounds like there has not been anaphyaxis to these things in some time anyway even before FAFH (so getting mild reactions to these things would not necessarily be much of a change).

      I apologize for going over it so many times--just want to fully absorb the result from anyone who has had FAFH can share. Thank you!

      Best,
      Shylock

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    3. He has had serious reactions to lentils. He has had mild reaction to most beans, including green beans. That's why we finally just stopped giving him any beans or peas. He has never had a known reaction to hazelnuts - that high RAST came out of the blue.

      The doctor expects no reaction to lentils, but I am going to have them do that test in the office. Same with hazelnuts, as that can cause severe reactions (although he's never experienced one).

      With regard to what's "expected"...I don't think any of this is expected! However, he is not avoiding "may contain" peanut at this point.

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    4. Hi FAB. Our DS has a high RAST score to walnuts, which we also think is weird because he has always eaten them. We have a lot of theories about it (maybe the protein is too big to pass through the gut into the blood stream).

      When you say that your DS has had a serious reaction to lentils, was this before or after FAFH-2 (or both)?

      Since starting the "do-it-yourself" FAFH and diet changes, we're also seeing a lot of great results (less scratchy skin, asthma gone, and blood work phenomenal--but we're too scared to food challenge).

      Best,
      Shylock

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    5. All the lentil reactions were when he was a toddler. No lentil exposures we know of since then.

      Walnut is cross-reactive with (evil) birch protein and a few other proteins:

      http://www.food-info.net/uk/intol/walnut.htm

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    6. Hi FAB, Ok, interesting. So, to sum up, up to 2 years before taking FAFH, there had been minor reactions to some things and major reactions to other things.

      Since taking the FAFH for 6 months, all major (known) major reactions are now gone and only minor reactions remain.

      It seems that not all of these things have been fully tested, but those that have been are consistent with this. As of now, the results from the mouse study (that if you take FAFH then you should not get anaphylaxis to amounts from accidental exposure) have held true.

      Of course, this is just one data point (your DS). But every data point counts! Thanks so much for sharing!

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  8. For what it's worth, Dr Li believes for the herbs to have their full effect, they need to be taken longer than six months. She estimates 2-3 years for most people. That does not mean you cannot see benefits prior to that or with "only" 6 months of treatment.

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    1. Hi Carrie, very interesting information. If I understand correctly, your child has been a patient of Dr. Li's and is/was on FAHF-2 (perhaps among other things)? Would you mind going over the improvements in your child's health since starting the treatment (especially if evidence exists that anaphylaxis has been blocked during accidental exposure)?

      Thanks very much,
      Shylock

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    2. Two of my kids see her privately. We We have only been on a protocol that involves herbs like fAHF-2, but so much more. We do not expect to see any reversal for at least a year and have not tested anything expect kidney and liver function.

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    3. That's very interesting. If you would not mind, I would love to know the full details of the treatment (what herbs, diet changes, anything). We've done so much self-research with the scientific papers and put a lot of things into practice (also getting help from some TCMs). I'd love to share treatment details--if you wanted.

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  9. There's still so much unpredictability when it comes to food allergies but I am amazed at how much has been discovered in recent years (both diagnostic and coping/handling). It will be interesting to see how things change over the next decade but in the meantime if it means I have avoided more foods than needed or for longer than needed, I'd rather have been safe than sorry.

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  10. I totally agree with Tiffany on this. The diagnosis is not always accurate and has many loopholes as such. Some times, you find yourself on the wrong side.

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  11. Hi FAB, Eager to hear if there are any further updates. Has it been a blissfully, quiet and stress free last 4 months? :-)

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  12. I try strict avoidance to prevent food allergy. But since I've read your blog I have learned so much. Thank you.

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