Quote from: GoingNuts on January 10, 2015, 07:37:12 AM
I've been hearing the "we're five years away from a treatment/cure/whatever" for nearly 20 years.   It's like background noise to me now.

This. I was the only person anyone knew with PA growing up, and they were giving my family the "10 years" bit in 1984-85. But obviously no good research was being done on it because barely anyone had it and other things were popping up that were more urgent (cancer, aids). And then I think they killed some people doing the injection tests. So we'll see. very cautious optimism. The only one I personally am hoping will succeed is the Chinese therapy. I already have a pretty high threshold, I don't want to spend all that time desensitizing only to suddenly develop a new allergy and have to start all over or have my threshold from the therapy change without warning.

On the flip side, though, is that for many or most, eventually there will be a reaction.  So, not doing desensitization doesn't = zero risk, either. 

I will say, it is not as simple as many might think.  It is involved, takes time, and restricts DS daily in when he can bathe/shower and exercise and what he eats and when.  It is not available to most of the country as we know and even if it were, it would not be practical for everyone with food allergies.

I had forgotten about the Sampson/Broussard thing.  I think NPR got slammed with plenty of feedback from people with food allergies and with food allergic kids.  Thankfully she hasn't continued to get press on this topic since then. 

I see what you are saying about how someone without FAs might read this article.  I feel the target audience is us, though. 

Quote
OIT was more efficacious for desensitization to CM than SLIT alone but was accompanied by more systemic side effects. Clinical desensitization was lost in some cases within 1 week off therapy.

DIng-ding-ding.

The part that even some physicians in the field don't really "get" about this is that a single OTHER perturbation to the immune system-- such as hormonal fluctuations, other illness, or an allergen exposure-- can abruptly shift the therapeutic dose without warning.  This makes interruptions in dosing rather more likely than not, because there will almost certainly be times when doses aren't tolerated and have to be stopped temporarily.

In some patients, this is a severe problem, and in others not-so-much.  The problem is that there is not any way of knowing who is who at the moment.

This is where our Dr. Awesome (Sinai-trained himself, btw) mutters darkly about hoping that clinicians offering OIT don't wind up killing someone with a peanut allergy in particular, because that is one that seems to have a VERY large degree of volatility for a considerable portion of the patient population.


And yeah-- it's definitely not that I don't love my child enough.  It's that I love her enough that I'm not going to weigh optional life activities very heavily alongside convenience and lack of worry for us... when compared with the very real risks of anaphylaxis for her as an individual when engaging in any of these therapies.

---

Here's another interesting thought-- just HOW MANY people in this choir of ours have experienced somewhat hellish reintroduction of an allergen-- usually eggs, but also milk and more rarely, pn-- after a passed IOFC?    A lot.

So this is definitely not one-size-fits-most.  Er-- well, perhaps it is, actually.  Reintroducing a known anaphylaxis trigger into your child's diet, IMO, is an act of tremendous trust in your allergist, and courage as a parent.   

We've done this now with both milk and egg, and it has NOT been smooth either time.  It feels more like wishing with the Monkey's Paw; if you get your wish, at what cost??  As a parent, one doesn't always want to know the answer, btw.

I wouldn't touch peanut with a ten-foot pole.  Not with my kid, given what milk alone was like, and that's not one that ever sent her to the hospital.    Egg has been more expensive to reintroduce.  Worth it?  Well, honestly?  I'm still not sure.  Maybe.   

Quote from: guess on January 09, 2015, 09:13:45 PM
And I certainly in no way intend to poo-poo what traction we can appreciate, but consider this.

What Joe or Jill Public reads.  In no way inaccurate, but certainly not representative of nuances and risks of treatment known to an informed patient and caretakers of patient.


Dr. Sampson does advocate in the public arena unafraid to handle it in person.  I have to say with respect I'm not sure it's his thing.  Recall the Meredith Broussard-Hugh Sampson showdown on the Loenard Lopate show years ago.  That was not a win for us and it was horribly disrespectful to Dr. Sampson in general.  Broussard's presentation of allergy was more persuasive to the public despite Dr. Sampson's impeccable subject-specific expertise and calm.

I'm almost thinking the big research facilities should hire a good public information officer whose sole job responsibility is managing the message in media.

Word.  I think about the Broussard/Sampson thing often and how that was such a missed opportunity for us.   (And I still hold a huge grudge against Leonard Lopate for the way he kissed Broussard's a$$ while poking and jabbing at Hugh Sampson every chance he got.) 

Quote from: YouKnowWho on January 09, 2015, 08:46:20 PM


And while I get many of those desensitization programs and cures are finally gaining a foothold, I have been hearing promises for nearly 10 years.  Maybe I am being impatient.

I've been hearing the "we're five years away from a treatment/cure/whatever" for nearly 20 years.   It's like background noise to me now.

And I certainly in no way intend to poo-poo what traction we can appreciate, but consider this.

What Joe or Jill Public reads.  In no way inaccurate, but certainly not representative of nuances and risks of treatment known to an informed patient and caretakers of patient.

QuoteSublingual Immunotherapy
We are also looking at sublingual immunotherapy (SLIT). This is where we give children a small amount of peanut extract to hold in their mouth. The cells of the mouth take up some of the peanut protein, causing some desensitization to occur. Our findings so far are consistent with what other researchers have seen, in that SLIT does afford some protection for food allergies, but not to the degree that we're seeing in OIT. The big benefit is a significantly lower amount of adverse reactions. We are currently focusing on how to make this therapy more effective at providing a higher level of protection on par with OIT.

What we read, and know, including limitations and risk.  This was linked to the article for readers to click through.  How many will, and if they do how many of those will read this and understand it as we could?  The conclusion is something we know of current longitudinal studies in both SLIT and OIT, not to mention the risk of EoE for OIT treatment.  A reasonable person may ask why are we not doing it all now with every child to cure them?  Do we like living with allergies and not love our children enough? 

QuoteBackground

Oral immunotherapy (OIT) and sublingual immunotherapy (SLIT) are potential therapies for food allergy, but the optimal method of administration, mechanism of action, and duration of response remain unknown.
Objective

We sought to explore the safety and efficacy of OIT and SLIT for the treatment of cow's milk (CM) allergy.
Methods

We randomized children with CM allergy to SLIT alone or SLIT followed by OIT. After screening double-blind, placebo-controlled food challenges and initial SLIT escalation, subjects either continued SLIT escalation to 7 mg daily or began OIT to either 1000 mg (the OITB group) or 2000 mg (the OITA group) of milk protein. They were challenged with 8 g of milk protein after 12 and 60 weeks of maintenance. If they passed the 60-week challenge, therapy was withdrawn, with challenges repeated 1 and 6 weeks later. Mechanistic correlates included end point titration skin prick testing and measurement of CM-specific IgE and IgG4 levels, basophil histamine release, constitutive CD63 expression, CD203c expression, and intracellular spleen tyrosine kinase levels.
Results

Thirty subjects with CM allergy aged 6 to 17 years were enrolled. After therapy, 1 of 10 subjects in the SLIT group, 6 of 10 subjects in the SLIT/OITB group, and 8 of 10 subjects in the OITA group passed the 8-g challenge (P = .002, SLIT vs OIT). After avoidance, 6 of 15 subjects (3 of 6 subjects in the OITB group and 3 of 8 subjects in the OITA group) regained reactivity, 2 after only 1 week. Although the overall reaction rate was similar, systemic reactions were more common during OIT than during SLIT. By the end of therapy, titrated CM skin prick test results and CD63 and CD203c expression decreased and CM-specific IgG4 levels increased in all groups, whereas CM-specific IgE and spontaneous histamine release values decreased in only the OIT group.
Conclusion

OIT was more efficacious for desensitization to CM than SLIT alone but was accompanied by more systemic side effects. Clinical desensitization was lost in some cases within 1 week off therapy.

In general, I would describe part of my advocacy heavily involves making other see beyond treats and stock epinephrine, or even managing anxiety.  None of those address physical access issues.  Advocacy also involves building upon what someone does already know or think about the condition.  Something this accurate, if not sufficiently contextualized, is a net positive.  I do wish he had not made a birthday party a sole defining example.

Dr. Sampson does advocate in the public arena unafraid to handle it in person.  I have to say with respect I'm not sure it's his thing.  Recall the Meredith Broussard-Hugh Sampson showdown on the Loenard Lopate show years ago.  That was not a win for us and it was horribly disrespectful to Dr. Sampson in general.  Broussard's presentation of allergy was more persuasive to the public despite Dr. Sampson's impeccable subject-specific expertise and calm.

I'm almost thinking the big research facilities should hire a good public information officer whose sole job responsibility is managing the message in media.

/soapbox

Agree with Guess.  Would it be nice not to worry at an optional event, sure.

But he misses on not talking about the areas of our life that are not optional.

We come across as a wah wah, my kid can't have the cupcake. 

And while I get many of those desensitization programs and cures are finally gaining a foothold, I have been hearing promises for nearly 10 years.  Maybe I am being impatient.

But to act like those are available to anyone with food allergies and then wonder why we continue to play victim when our child could be cured...not good.  I know he meant well but this was meant for Allergic Living, not Huff Po.

All true, and I don't disagree a whit with what you express here on home territory, we being the choir.  I'm not sure the public reading the HuffPo article can understand the nuanced appreciation of a veteran allergy parent who has been through hell and back in MFA treatment, including cost, access to such a program with vetted doctors and risks in outcome, and that allergy is not limited to an eating related disability.  Nor will they be able to understand that we just can't go to the chiropractor-herbalist down the street and whip up an herbal formula. 

He's writing it for we who understand and appreciate not realizing (in my opinion) what the non-allergy rest of the public will be reading. If this were published on Allergic Living that would be awesome.  On HuffPo, without key context, I dunno.  You have more faith in the rest of the public than I do to understand the critical context of allergy research and treatment, and the real cost of quality of life beyond cake.

Although I should note that my understanding is HuffPo is an aggregator of articles so knowing it may have been written for the home audience (us) and HuffPo may have just reprinted.  Still, however it made its way to HuffPo that's what I'm concerned about.  News outlets being what they are don't really do much to shine a great light on allergy.

If my kid can go off to a party without me worrying, he can get a hug, handshake, go on a flight,etc, too.  It certainly is about more than a cupcake.

So far our son is doing very well with desensitization and it is making a big difference for us.  He previously had serious contact ingestion reactions and we are not really worrying about that anymore.  He can eat many more foods.  He can sit with people eating things he could not in the past. It is making a positive difference in our lives.  I'm glad we are doing it. 

For any of the uninitiated reading this article that may wander across the internet to find this, what Dr. Sampson should have explicitly added is that none of these treatments are FDA approved for mainstream roll out.  Not even close.

More directed to FASers of every stripe whether the regular rowdy crowd or kindred spirit lurkers, if this is Dr. Sampson's mere "glimpse of just some" research gimme more because we've all known about these for a long time, participate in the studies and live out the rough patch imperfection from the experimental treatments.

It's more than the party.    It's school, work, legal assistance, air flight to make important family contacts or events, the privilege to not worry about receiving a hug or handshake. 

I wholeheartedly appreciate Dr. Sampson's work and words of encouragement, but I wish this had come from within the community and had fuller context about the treatment limitations and that this is not about cupcakes but access and quality of life beyond the birthday party.

My opinion.

http://www.huffingtonpost.com/mount-sinai-health-system/is-better-treatment-possi_b_6424426.html

Hugh Sampson, M.D.
Director, Jaffe Food Allergy Institute
Icahn School of Medicine at Mount Sinai

Your child, who is allergic to peanuts and tree nuts, just received a coveted invitation to a big birthday bash. She is excited... but you're terrified. What foods will they serve at the party? Will they use the same ice cream scoop for the butter pecan as the vanilla? Will they offer candy containing a trace amount of peanuts?

More and more American parents today are living with the fear that their food-allergic child will accidentally ingest a problematic food and trigger a life-threatening allergic reaction called anaphylaxis. According to the Centers for Disease Control and Prevention, the prevalence of food allergies increased approximately 50 percent between 1997 and 2011 among U.S. children aged 17 and younger. Currently, there is no way to predict one's risk for severe allergic reactions, and the only approved treatment methods for food allergies are avoidance, and administration of the drug epinephrine to stop a reaction should one occur.

At the Jaffe Food Allergy Institute, we are working to change that through research focused on developing more accurate diagnostic methods and better treatments, as well as preventions for food allergies. It is an exciting and promising time for food allergy research. Below is a glimpse of just some of our research aimed at improving treatment strategies:

Baked Egg and Milk Studies
The standard practice for managing egg and milk allergies has been to pull all forms of these foods from a child's diet. Recent studies have shifted our thinking about this treatment approach. Our research on milk and egg allergies previously showed that the majority of children with these allergies could tolerate products containing baked eggs and milk, such as muffins and cookies, because of the way heat changes the allergenic proteins. We also found that including baked milk or eggs in the diet speeds up the development of tolerance to regular egg or milk, compared to strict avoidance. We are now further studying the mechanisms responsible for these results, with the hope that our answers could dramatically change children's diet restrictions, while shortening the duration of their allergies to regular milk and egg.

Oral Immunotherapy
Our own research has shown that the prevalence of peanut allergy alone tripled among children between 1997 and 2008, with more than 1 million kids now affected. While children often outgrow allergies to some foods, such as egg, milk, wheat, and soy, allergies to peanuts and tree nuts usually persist. We are currently studying whether providing young peanut-allergic children with an experimental treatment of oral immunotherapy (OIT) will eventually eliminate their peanut allergy.

In OIT, we give a tiny amount of peanut flour periodically and then slowly increase the amount to determine the maintenance dose needed to desensitize the child to peanuts. It's similar to what we do with allergy shots for pollen allergies, except this is a very small amount of the allergen given by mouth. OIT does seem to provide good protection for accidental ingestion of peanuts, but the downsides include a significant number of adverse reactions that occur before the maintenance dose is found, and the requirement for therapy to continue long-term to remain effective.

Sublingual Immunotherapy
We are also looking at sublingual immunotherapy (SLIT). This is where we give children a small amount of peanut extract to hold in their mouth. The cells of the mouth take up some of the peanut protein, causing some desensitization to occur. Our findings so far are consistent with what other researchers have seen, in that SLIT does afford some protection for food allergies, but not to the degree that we're seeing in OIT. The big benefit is a significantly lower amount of adverse reactions. We are currently focusing on how to make this therapy more effective at providing a higher level of protection on par with OIT.

Epicutaneous Therapy
Another method we're researching is epicutaneous therapy to see if an experimental skin patch reduces allergic reactions to peanuts in children. In this study, for which I am the primary investigator, the child wears a small skin patch, similar to a little circular Band-Aid, which has a small amount of peanut protein in the center. Older children wear the patch on the inside of their arm, while younger children wear it on their back, and the patch is changed daily.

A very small amount of the peanut protein permeates the outer layer of skin, where special immune cells ingest it and make their way to local lymph nodes. Here, they activate a type of regulatory immune cell, which dampens the immune system's response to the peanut protein. In our research, we have seen virtually no systemic reactions in the children participating in this clinical trial, and we hope this therapy will prove to be a more permanent way to turn off an allergic reaction.

Chinese Herbal Therapy
Finally, we are about to start a human clinical trial of an herbal product designed for use as an investigational drug for children with multiple food allergies, a condition that can be particularly challenging when it comes to dietary restrictions. In preclinical studies, this herbal formula, which is derived from ingredients used in traditional Chinese medicine, proved extremely effective in turning off the allergic response in a mouse model of peanut allergy.

Research conducted over the past few years, and now underway at our institution and others around the country, has generated promising developments in diagnosing and treating food allergies. I am optimistic that in a not-too-distant future, parents will be able to send their food-allergic child off to that party, with the confidence that he or she will return home safe and sound.