POKWASPA, The Blog: A place to examine in depth what really matters to us most

POKWASPA: The Blog is for all peanut allergy news on the radar: Things which infuriate, inspire, excite, terrify or upset us about peanut allergies. Our blog's mission is similar to our Facebook group, but here it's posted in a longer form so we can have the news we discuss available to refer to.

From the highly scientific to the deeply personal. From breakthroughs to personal setbacks. From tears to triumphs: Parents Of Kids With A Severe Peanut Allergy, The Blog seeks to engage, inform and empower parents to be the best they can be to their peanut allergic child by staying on top of what the buzz is right now regarding peanut allergies.

To submit posts for this blog email at parents.peanutallergy@gmail.com


POKWASPA Parents Of Kids With A Severe Peanut Allergy Group

POKWASPA Parents Of Kids With A Severe Peanut Allergy Group
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Tuesday, May 19, 2015

Owner of Atlanta’s 1st 100% Nut Free Bakery seeking votes for CHASE grant

Hello,
My name is Trenise and I am the proud mother of 2 beautiful children with life threatening allergies to all nuts. I am also the owner of Atlanta’s 1st 100% Nut Free Bakery. I am excited to be considered for a grant from CHASE to expand my business and offer more amazing allergy free desserts. If you could please take a moment and vote for me, that would be amazing. I only need 250 to move to the finals and I am half way there.
Blessings,
Trenise

https://www.missionmainstreetgrants.com/b/25093

Saturday, May 16, 2015

CBS2 Los Angeles news story about my daughter's near fatal peanut allergy anaphylaxis, 1998.

This video was shot when Juliet was only one year's old back in 1998.

I was still reeling from having nearly lost her at the hospital after one bite of her first peanut butter sandwich.    Her experience in the hospital caught the attention of the local news because it was only that year that people began to notice an increase in the incidence of peanut allergy anaphylaxis.  But that year, my child-rearing bible had said nothing about peanut allergies in 1996-8.  The What To Expect When Raising A Toddler.  Nothing in those books could have prepared me for what I've learned now.

I hadn't even heard of what a peanut allergy was until the day the 911 operator explained to me why my daughter had stopped breathing.  That was the day everything changed.  Everything.


Thursday, May 14, 2015

Teen spokesperson and professional model, Juliet Larsen, to address teens regarding her life with a food allergy and facing her fears at F.A.R.E. conference

Great article by Christine Peddle in Allergic Living Magazine which is always full of amazing information and entirely up-to-date info regarding auto-immune issues and allergies.

And this edition has an article featuring someone very dear to my heart:  My eldest daughter, Juliet Larsen, who, in spite of life-threatening food allergies has found the courage to pursue a professional modeling career since the age of 14.

Sorry the scans are hard to read!

NOTE: Juliet Larsen to address Teens at FARE Conference this Sunday, Long Beach, CA.  She will discuss how she felt growing up with this particular food allergy and how she did not let her fears of anaphylaxis stand in the way of following her dreams regarding participating in sports, theater events or even pursuing a professional modeling career.  

**This Sunday, Long Beach, California at the 2015 annual  F.AR.E. Conference.





Juliet Larsen working runway as of today! 
-- Beverly Hills Neiman Marcus.


Wednesday, May 13, 2015

NPR radio clip why it's significant and meaningful for major league sporting event to hold peanut-free events

Monday, May 11, 2015, the Los Angeles Dodgers held major league baseball game night where some of the stadium was peanut-free for families with kids allergic to peanuts.

KPCC called me for my thoughts on this, and here's that clip from May 10, 2015



Thank you Dodgers!

Now, Los Angeles Angels of Anaheim, it's your turn to step up and offer fans a peanut-free game, too!

We're very grateful for your food allergy awareness action! Thanks for recognizing the needs of peanut-allergic kids, everywhere and helping raise awareness for a life-threatening condition we never wanted but live with non-stop.

Go Dodgers!

Monday, April 13, 2015

Busy college touring lately - but did want to share a post from a mom's personal blog, Eating Peanut.


Lately, I've been absent more than usual as I have been undergoing the intense parent/child journey lately regarding which college to choose for our child.   College tours!  Decisions.  Huge distraction from my online work.  So, I apologize for any break in posting.


In any case, one of the more interesting blogs I've been consistently posting updates from over the past year is written by Caryn Tatelli, who keeps a personal blog about her daughter's food allergy treatment called  Eating Peanut.  It's a personal blog, like none other, which is why even though I don't post every single blog there is about food allergies in our group, I've been happy to post this one because Caryn's writing is so personal, so beautiful that I know it will allow us a window into her family's soul regarding her child's journey with severe food allergies and oral immunization therapy.

She reached out to me this weekend and reminded me that I have missed sharing her last few posts, but though that I should try to read her post that day as it was about her daughter just experiencing anaphylaxis that day -- after moving forward with her up dose from home.

Eating Peanut explains their story best.  I'm just one of her platforms.  She is the story-teller:  Here is her latest post written yesterday --  And until I can get a handle on college choices and financial aid options I may still be a bit distracted - but I promise to return and catch all of you up to speed on some amazing food allergy news I've been made aware lately.  I promise - I'll be back!  Until then, consider this post:

The Bravest Kid I Know

I am shaky.
And my heart is racing.
  (Epinephrine will do that to a person...and to that person's parent, too...)
My thoughts are whirling as I write this.
(I am not sure I am going to be able to concentrate well enough to finish it, but I want to try.)

I feel like (I hope maybe) writing will help me process what happened.
Writing usually helps...

This morning, Susan had an anaphylactic reaction to her peanut dose, which is 2000 mg of peanut protein, or 8 1/2 Peanut M & M's. 


Susan took her dose a bit later than usual (but not outside the dosing window), because she had an early-morning viola lesson.
She was reading in her bed when, nearly an hour after her dose, her sister walked into her room and observed that Susan's face was really, really red. 

Susan went downstairs to see my husband, and then the two of them went up to the third floor, where my home office is, to see me.  By the time Susan got to the third floor, she was wheezing and said that she was "having a hard time breathing."  She had felt fine (and didn't even know her face was red when her sister observed how red she was).  I could see how red Susan was, and also observed that her nose was really drippy...and that she had beads of sweat standing out on her forehead.  I handed Susan two Benadryl while she pulled out her EpiPen.

We both knew Susan needed epinephrine, although for a split second I had a hope that she might not need it.
I wondered about Susan's future in the clinical trial if we had to administer epinephrine, but I knew that would not stop me.  While I hoped -- for a split second -- to see something that would reassure me that Susan did not need epinephrine, I knew -- from looking at her, from listening to her breath, that she needed epinephrine.

We did not hesitate in our decision to administer epinephrine.

We did not have to discuss whether or not Susan would self-administer -- she took the EpiPen in her hand, removed it from the case, uncapped it and then pressed it against her leg, crying.
She didn't press it hard enough -- I could tell as she did it, and I knew for certain when I did not hear the auto-injector release...that she hadn't pressed it with enough force.

She looked at me and said "I am going to do this."
Susan pulled the EpiPen away from her leg, to allow for more momentum and counted "1, 2, 3, 4, 5, 6."

I said "NOW," her hesitation scaring me...and she jabbed the EpiPen into her leg, holding it there, crying all the while.  As I held Susan, I could feel how hot she was, and hear the rasp of her breathing.

Food allergies are scary.
Food allergy treatment options are scary, too.
I am beyond thankful for epinephrine...
And while all that Susan has gone through since she was enrolled in the clinical trial saddens me...and scares me, too -- mostly because I have seen again and again how quickly an allergic reaction can escalate -- I am also thankful that she has learned first-hand (again and again) how quickly epinephrine helps her.
I am thankful for the multiple opportunities Susan has had to self-administer her epinephrine since she was enrolled in the clinical trial.

The epinephrine helped immediately.
With shaking hands, I paged the on-call doctor for the clinical trial (under any other circumstance, I know that I would need to call 911 -- and I don't want how we handled this situation to ever cause anyone to do anything other than call 911).
She called back right away, and knew it would be me on the other end.
She recognized my number.

I wish that weren't the story of our journey in the clinical trial, but, it is.
We talked -- about how Susan was right then, about what had happened, and about Susan's dose -- working to understand what the cause was.

As usual, there are more questions than answers.

Is it hormones? 
  Certainly, at 12 1/2, Susan is at an age when hormones are changing, when "cycles" are not yet cycles...

What about the way Susan's skin looked yesterday?  Was that related?
  I reminded the doctor of how Susan's skin had looked early in her home-dosing -- red, irritated -- "hivey" to the me who had never seen a true hive -- could that be related?


Was that 1/2 of a Peanut M & M not truly a half?
  There is no way to know -- but I will say that it isn't easy to split a Peanut M & M in half (and, it was never the intent of the study coordinators that we have to split a Peanut M & M, as the dose for 4000 mg of peanut protein -- the original goal, which Susan could not tolerate -- is 17 Peanut M & Ms).


Was there a problem with that particular batch of Peanut M & Ms?
  Interestingly, the 8 Peanut M & M's that Susan took came from two snack-sized packages that her sister and my husband purchased from some boys who were selling them for a fund-raiser (they came in a package that had six snack-sized packages -- which contain a mere five Peanut M & M's each) yesterday.  She had been dosing with pastel Peanut M & M's from Easter.  


  I sent my husband dumpster diving.  (In our own garbage can -- is it less gross to go dumpster diving in your own garbage?  I'm not sure...but I absolutely wanted the wrapper to the package, as I will be calling M & M Mars tomorrow morning...)

**

Is Susan sick or getting sick?
  Not obviously.  She did have a slightly sniffly nose yesterday morning, but nothing had come of it and she was fine this morning -- no sniffles, no temperature, nothing obviously wrong.


Just the other day, we stocked up on pastel Peanut M & M's -- at 50% off and in colors Susan enjoys.  Before we made the purchase, I asked Susan if she was sure she wanted to keep eating Peanut M & M's.  She assured me she did.
Did I tempt fate in some crazy way?



Before we hung up, I had two questions I had to ask the doctor.
  (They were related in my mind, even though they are not actually related...
   I somehow had them jumbled up together.)

I prefaced my first question with an assurance that I already knew the answer (and I did).
(I know I will always err on the side of epinephrine -- I do not want to have to live with the regret of hesitation.)
  Do you think Susan really needed epinephrine?
  Yes -- yes, if her breathing was affected, she did.
  Of course, I knew it all along...but then I had to ask the second question -- the one I knew Susan wanted me to ask but was afraid to voice.  I saw her watching me solemnly as I asked...


I prefaced my second question with the statement that I knew Susan wanted to know the answer...and I could tell by the look on her face that I was right...even though a part of me wondered how -- after all that she has been through -- she could still want to see the clinical trial through.
  The doctor was less reassuring than I had hoped.
  She said she wasn't sure.
  She said she would have to check the protocol. 
  She talked about what might happen if Susan had to withdraw from the clinical trial.
  I valued her honesty, but I wished for something different.
  I advocated a bit, saying that if there was any room for consideration, any "gray area," Susan wanted to see the clinical trial through.  Even minutes after reacting to her dose, Susan was nodding her head YES -- she wants to keep eating peanut. 
The deadly beast she knows and lives must, at least for Susan, be scarier than the deadly beast that lurks.


We talked about next steps, and agreed that Susan would likely follow the same course she had when she had the adverse reaction to her 1/2 of a Snickers Bar in February, although the doctor wanted to check with the other doctors involved to be sure about the plan.


While I waited to hear back from the on-call doctor for the clinical trial, I reorganized our plan for the day.

-- I found a substitute goalie for Susan's soccer game.  (I talked to three sympathetic mothers of goalies who subbed for Susan during the winter indoor season...each of them taken aback when they learned Susan also lives with food allergies...)

-- I handed off preparation for and running of an important Webelos I den meeting to my husband -- I was not comfortable leaving Susan (even with him, and that's on me, not him)...and I couldn't imagine effectively leading four 10-year old boys through the last pieces of the Citizenship badge requirements...

-- I cancelled Susan's plans with a friend (she felt she would be too tired, and we did not want to disappoint her friend at the last minute).

-- I sought (and received) permission for Susan to attend her sister's post-season banquet (the team is strict about RSVPing and paying in advance, and I had not been planning for Susan to attend, but since she was not going to be with her friend and since staying home alone was absolutely not an option, I had to sort that out...).

I watched over Susan.
I took deep breaths.


I wondered aloud about the difficulties we have had trusting our "halves" as I handed Susan the document entitled Getting Your Daily Peanut Doses at Home.  I acknowledged that she would likely have to eat Peanut M & M's for a while longer while proposing she look at the options to see if there was something that might be easier to measure accurately.  (And trust me, this is NOT about the "ease" of things...for if it were, we wouldn't still be in the clinical trial...)  Susan looked carefully at the list of options, and wondered about dividing 3.5 teaspoons in half...and then spied the Reese's Peanut Butter Cup option (for her, the dose would be a single full-sized peanut butter cup -- my favorite peanut butter productever and something I have gently suggested countless times...always reminding myself that since Susan is the one eating her dose, Susan should be the one to pick what she eats.

I should be secretly pleased that she is thinking about eating a Reese'sPeanut Butter Cup.
But I am not.
(I loved how happy she looked with her hands full of Peanut M & M's and I loved the idea of those being her "forever" dose.)
I looked forward to working with her doctors -- post clinical trial -- to get from 8 and the dreaded 1/2 to a full 9...but if today's anaphylaxis was caused by a "too big" peanut or peanuts, we are far, far from increasing Susan's daily dose to 9 Peanut M & M's.


I am watching over Susan now.
I am taking deep breaths.

I am marveling at the fact that Susan wants to stay in the clinical trial.
I am tired, and this has been an incredibly difficult year.
I do not believe in quitting, but, honestly, if Susan said she wanted to be done, I don't think I would even try to discuss it with her...we would just simply be done...having given her best go at finding a treatment (no, not a cure) for peanut allergies.

I cannot imagine ever trusting Susan's daily peanut dose...
  (and perhaps this is what I was meant to learn this year -- that while Susan might be safer in some ways as the result of the clinical trial, she will always need to carry epinephrine, she will always need to be ready to self-administer in the case of an anaphylactic reaction, she will still be allergic to peanut...)


Today, Susan is the bravest kid I know.
I struggled with whether or not I could say that, for I have witnessed children fighting incredibly difficult battles with cancer and I know children who live with terribly difficult medical and psychiatric conditions.
But, for today -- Susan is the bravest kid I know.
She could walk away from this all -- no more daily dose of a food that could kill her, no more sleeping with her EpiPens on her pillow, no more dosing-related exercise and/or showering restrictions, no more missed school for clinical trial appointments -- but she has chosen not to do that.

And as I reflect on Susan's conviction, I find myself thinking that maybe it isn't really so much that she is so brave -- maybe the fears and restrictions she lives with now are "better" than those she had to live with before we started the clinical trial.  Maybe not flying, not seeing movies, almost never eating out and not eating anything that hasn't been thoroughly researched and checked for risk of cross-contamination is also pretty scary.

In fact, I know it is, for I remember that life well.

The deadly beast she knows and lives must, at least for Susan, be scarier than the deadly beast that lurks.


Friday, March 20, 2015

Greatest tool parents of kids with peanut allergies have to protect them at school is social psychology.


Most people would say it's the Epi Pen, or a 504 plan, but here's what I think the greatest tool parents of kids with a peanut allergy have to protect their children from harm at school: Social Psychology:

I firmly think using one's social network to protect our children has been the greatest tool a parent has at their disposal to help keep their child safe at school.

What does this mean?

It means telling people they can't have a food will bring you resistance.  Offering them a choice to help you do a good deed may be far, far more effective.

One tactic is based on might.  The other is using tools of engagement.   Something I've been writing on my FB Group, Pokwaspa, for several years now.

The article, entitled Our Warm Embrace Of Those Allergic To Peanuts would argue that it is social psychology that is the most effective:   You really should read this article, as it's very helpful.

I have been stating this fact on my FB group page for years, but lately I'm not sure the newest wave of Peanut Allergy parents fully understand what I mean by "you catch more flies with honey than vinegar."

Some new peanut allergy parents arrive on the food allergy scene assuming that just because a food can kill their child that naturally they have the rights of the law to protect their children anywhere in schools.  Maybe -- but, sometimes, not so easy to enforce.   Things are still very new.    In fact this wave of so many deadly peanut allergies en mass is also rather new in the scheme of things.

Your kid might be killed by contact with a popular snack food.  But, just try to set rules with people about food.  The fact is, people are very resistant to change about their food.   Food is deeply personal.  It's about home.  It's about how we nurture those we love beyond the breast.  It's about comfort and safety (Well, for us it is!) and it's something people are extremely personally connected to:  Food.

Logic does not always lead change.  Not when it comes to people and their food.  No way.

FOOD is emotional.  You can only approach getting others to change their ways of eating by using their emotions.  That's how what I've learned.

And you can't just stomp your foot and insist people "cooperate" about peanut allergies.  

This approach will be always be met with resistance.    A more effective, long lasting strategy is to inspire engagement.

In fact, this is precisely why I left my FB Pokwaspa page "open" to the public for 7+ years.  I wanted to inspire those who did not have peanut allergies to "eavesdrop" on what our world is truly like for us.  I wanted the world to witness how cruel it is to marginalize us for just trying to keep our kids alive and safe.   I knew only by encouraging the non-allergic to FEEL what our world was like would any real change come about.


In the article,  Our Warm Embrace Of Those Allergic To Peanuts, I read:

"So: What makes peanuts different? Why do American consumers appear to be more accepting of one kind of restriction (on peanuts) than on others?
The answer has a lot to do with the way the message is delivered. In the case of peanut allergies, it’s often parents appealing directly to other parents on a hyper-local level about their child’s condition. The justification for the restriction comes with a personal and emotional appeal. It’s dramatically clear what’s at stake in the request. The request usually comes in a spirit of humility. Perhaps most critically, those being asked to make the sacrifice are placed in the position of being a model citizen and doing a good deed by saying “Yes."
Agreed!!!
The truth is, people are deeply emotional about food.  They flat out rebel against rules about what they like to eat.  Nothing is so fundamental as a person's relationship with food.    If you want them to give up a specific food, then you have to use a strategy that encourages them to FEEL why you are asking them to give something up.  
"-   The fact is, though, when given the chance to help others in a big way with a small sacrifice—one that’s presented to them as a choice—most consumers are eager to cooperate."

The answer has a lot to do HOW the message is delivered to others who do not have a problem with food.  People go wonky over being told what they CAN eat, or not eat.

Trust me: There appears to be no other subject more loaded with reactivity than bans of foods, or even just rules about foods.  I have been saying this for years.

You can't win the war by insisting people change.  You have to reach into their hearts and inspire them to want to help.  That's the key.

This is what I have said for over a decade now.

I have used this philosophy to turn one of the most stubborn, blue-ribbon winning, nationally acclaimed school districts around starting in 2002.

 It wasn't easy.

But, my journey there taught me that you can force people to give up food, and you'll encounter resistance.

OR you can request others join you in your quest to do the right thing, better yet -- you can first touch the hearts of the children who are in class with your child, and then reach out to their parents...and then you may very find that after engaging their hearts first -- then you will succeed.


Tuesday, March 17, 2015

New type of food allergy showing up more now called eosinophilic esophagitis (EoE), an inflammatory response in the esophagus causing trouble swallowing food


COLUMBUS -- A new type of food allergy is showing up more and doctors don't yet know why. It's called eosinophilic esophagitis (EoE), an inflammatory response in the esophagus that makes it hard to swallow food.
"It's considered a newer medical diagnosis, identified just in the last 15 to 20 years. We're seeing a steady increase in the number of people with this condition and we don't really have a clear cause yet," said Dr. Princess Ogbogu, director of the allergy and immunology program at Ohio State's Wexner Medical Center.
It's widely believed that EoE is related to both food and pollen allergies, and may be more common in people with allergies and asthma.
Eosinophils are white blood cells that aren't normally present in the esophagus. They are immune cells that help fight off certain types of infections. If there are too many eosinophils, they can cause damage to the body. High counts of eosinophils are common among those with asthma, Crohn's disease, ulcerative colitis, lupus, eczema and some forms of cancer.
When large amounts of these white blood cells collect in the esophagus, it can cause inflammation, scarring and narrowing of the esophagus. Ogbogu says depending on the person's age, symptoms can vary.
"Children with EoE often complain of stomach pain and refuse to eat. They may have trouble swallowing, vomit frequently, and have failure to thrive," Ogbogu said. "Adults and teens with EoE also have difficulty swallowing and issues with food getting impacted in the esophagus, which can lead to an emergency department visit for removal. They can also get persistent heartburn that's not relieved with medication and even chest pain."
Because most cases of EoE are related to food allergies, Ogbogu says treatment and management include tests to identify the allergen, elimination diets, and medical therapy. Often the culprit is among the eight foods that cause about 90 percent of all food allergies in the United States: peanuts, tree nuts, cow's milk, eggs, wheat, soy, fish and shellfish. Sometimes the symptoms are seasonal and related to pollen that easily gets inhaled and swallowed.
In addition to eliminating the allergen, inhalers are often prescribed as topical steroids that can be used to coat the throat and reduce inflammation. If these treatments aren't helpful, doctors may suggest dilation to help improve swallowing.
"We work closely with our colleagues in gastroenterology to diagnose and monitor EoE," Ogbogu said. "Unfortunately, this condition is becoming more common, but the testing and monitoring hasn't caught up yet. We are learning more every day."
Researchers at Ohio State's Wexner Medical Center are partnering with colleagues at Nationwide Children's Hospital in Columbus to study and learn more about EoE. Current projects include examining eosinophils to learn more about these cells and their effects related to allergies; testing whether vitamin D levels influence susceptibility to EoE; and working to identify the most common triggers associated with EoE.
Follow WKYC's Senior Health Correspondent Monica Robins on Twitter: @MonicaRobins

Monday, March 16, 2015

Meet Other Parents Managing Food Allergies at the 2015 FARE National Food Allergy Conference in Long Beach, CA May 16-17



When was the last time you were in a room with hundreds of parents and others managing food allergies? Maybe never? You’ll get your chance by attending the 2015 FARE National Food Allergy Conference on May 16-17 in Long Beach, Calif. This year marks the first time the national conference will take place on the West Coast! 



This unique opportunity gathers individuals and families managing food allergies, caregivers, school staff, healthcare professionals and others to learn about advances in food allergy research and advocacy, best practices and practical skills for living well with food allergies, and much more. Here are just a few of the exciting sessions you can attend:

·         “Support Group for Parents of Newly Diagnosed Children,” led by a registered dietician and mother of a 16-year-old with multiple food allergies
·         “Primed to Present: What Every Parent Must Know About Managing Food Allergies at School,” led by Gina Clowes, FARE’s Director of Education and founder of Allergy Moms
·         “Finding the Right Food Allergy Specialist for You and Your Child,” led by Dr. Allen Lieberman
·         “Bring Fun Back to the Kitchen,” led by Amy Hull Brown, founder of WellAmy.com and Tiffany Rogers, founder of Allergy Cookie

Both full conference and single-day registrations are now available. Register before March 27 to receive a special Early Bird discount! View the agenda and register today at www.foodallergy.org/conference


On a personal note:  My daughter, Juliet Larsen, who inspired me to create PARENTS OF KIDS WITH A SEVERE PEANUT ALLERGY, is speaking at FARE in a seminar called Living Your Dreams, about her experience in overcoming her fears about following her dreams while managing a life-threatening food allergy. 

Juliet will share insights about what is was like growing up for years known only as "the peanut allergy kid" from pre-school and up.  

She will share how her self-perception changed once she watched Project Runway and realized she is the master of her own fate, hampered only by fear of the unknown.  She faced the future knowing that as long as she stayed are focus and prepared she could reach for her dream not limited by health issues.  


Juliet seeks to inspire all food allergic kids to recognize their own dreams and see them through to fruition with a deep faith in their own ability to keep themselves safe and motivated.  


Having a food allergy is not the end to a dream, it's an opportunity to learn to focus on what matters and prepare well for the future.




Tuesday, March 3, 2015

More stories pouring in about how introducing peanuts early in life "may be the key" to preventing peanut allergies....really?

Except, in my opinion - as a peanut mom for 18 years now is that is this really can't be the whole story, it can't be "the missing silver bullet." --  Not by a  long shot.



If it were really just that easy to stop a peanut allergy from happening just by rubbing it on our babies or feeding it to them early on, don't you think must of us concerned parents might have figured this out already by now?  I do.  We allergy  moms notice everything to do with nuts.




I find these stories so simplistic in theory and so filled with logical loop holes that it's almost hard to post them.  What about the babies who were severely allergic prior to ingesting peanuts at a few months old?  What about them?  What about the baby who might go into anaphylaxis because a mom or dad reads this and makes them eat peanuts when they fall into the category of super, uber, extremely peanut allergic kids?  -- Oh, well.  Clearly some children are helped by this concept and it's important to share news that really help those peanut allergic kids.  I just wish the media would calm down and make sure we all know there is NO ONE SIZE FITS ALL PEANUT ALLERGY.  They are are different.   Some even are more reactive at different times than others.  So, these new theories really do need to take that into account more.

For instance, I have a very good friend with a peanut allergic child who she says was already born with the allergy.

I wrote her and asked her how she felt about these new reports about early introduction to peanuts possibly preventing a peanut allergy.

I wrote: "What do YOU make of this new report that introducting peanuts early prevents PA?"

My mommy friend, Donna wrote me back, "I think it's so simplistic and would have killed my kid. Samantha was reacting badly to my eating peanuts every day of her childhood. I lived on peanuts! I ate peanut butter on apples every day and had it on my hands. I nursed her while eating it. She had horrific eczema and rashes and have bloody poop all the time as a baby. in 1996 they never made the connection btwn peanuts and her rashes on her mouth and bloody poop. I'm sure my ingesting peanuts contributed to her allergy. Of course I can't prove that, but it's a real concern to me to read these reports now."

So, you see?  If you ask real peanut allergy parents about these new reports based on what they've discovered in Israel, you do get a wide variety of reactions from to "Good to know!" to "I don't buy it."

Such is the madness of the peanut allergy world.  Every year a new study reverses the "new study" of the few years before.   It is crazy-making.




However, for the record here's one more story about introducing peanuts early may prevent a peanut allergy later on...

FROM TABLET:



One of the authors, Gideon Lack, is a professor of pediatric allergy at Kings College, London who’d already published a study in 2008 showing that the rate of peanut allergy in Israeli Jewish kids is only about a tenth that of British Jewish kids.
Why? Bamba. 
Bamba is a hugely popular Israeli snack. Bamba is what would result if Peanut Butter Cap’n Crunch and a puffed Cheeto had a baby. Bamba is like a sweet version of Veggie Booty, if Veggie Booty were eaten not only by kale-dusted American hippie children, but by everyone. Ninety percent of Israeli families buy it on a regular basis; a million bags are produced a day. In Israel, the very notion of banning peanuts in school lunches would be greeted with derisive laughter.
For the newly published study , Lack and the rest of the international team of researchers selected 530 four-to-eleven-month-old babies with eczema or an egg allergy (two indicators of a propensity toward peanut allergy). Half the babies were fed a small amount of Bamba or peanut butter three times a week until they turned five. The other half were given a peanut-free diet. The result: 1.9 percent of those who were fed peanuts wound up being allergic to them, compared with 13.7 percent of kids in the peanut-free group. The scientists also looked at 98 babies who tested weakly positive to peanuts before the study began, meaning that they were likely to become truly allergic. In that group, 10.6 percent of the peanut-eaters developed an allergy by age five, compared to 35.3 percent of the peanut-avoiders.
This is big news, but the medical establishment was already starting to figure that earlier approaches to preventing peanut allergy weren’t working. Back in 2000, the American Academy of Pediatrics recommended that kids with a family history of allergies not eat peanuts at all until age three. In 2008, the AAP revised its stance, saying that there was no evidence this strategy prevented allergies. However, it didn’t actually suggest throwing handfuls of Bamba in the air and catching them in one’s mouth. Now that the number of Americans with peanut allergies has more than quadrupled in the last 20 years, an editorial in the New England Journal of Medicine asks if we shouldn’t go that extra mile. “Given the results of this prospective, randomized trial, which clearly indicates that the early introduction of peanut dramatically decreases the risk of development of peanut allergy (approximately 70 to 80%), should the guidelines be changed?” The editorial goes on to recommend additional studies to find out exactly how much peanut is optimal to introduce, and whether the findings are applicable to other common allergies like tree nuts, milk and eggs, but provisionally suggests that “because the results of this trial are so compelling, and the problem of the increasing prevalence of peanut allergy so alarming, new guidelines should be forthcoming very soon.” It concludes that this study, “makes it clear that we can do something now to reverse the increasing prevalence of peanut allergy.” It does not say “AND EVERYBODY SHOULD EAT BAMBA BECAUSE IT IS DELICIOUS AND LIFESAVING.” But that’s implied, right?
Related: Going Nuts
Find this story online: http://tabletmag.com/scroll/189256/do-peanuts-prevent-childhood-allergies








Wednesday, February 25, 2015

Full Podcast of npr's Diane Rehm Show "New Research On Preventing Peanut Allergies"

Click here to listen to Diane Rehm's show












-- from the WAMU 88.5 npr website
   For reasons not entirely clear, the number of people allergic to peanuts has risen dramatically in recent years. Peanut allergies usually appear in childhood. The condition is sometimes fatal, and there is no cure. For children with risk factors for allergies, pediatricians have long advised complete avoidance of peanuts. But a new study by British doctors — just published in The New England Journal of Medicine — suggests that advice was wrong. The study shows that exposing infants to peanuts could sharply cut the incidence of allergies to the legume. Many pediatricians are optimistic but not ready to issue new guidelines. We discuss the latest research.

Guests

  • Dr. Sally Joo Bailey assistant professor of pediatrics at Georgetown University School of Medicine.
  • Dr. Gideon Lack professor, King’s College London, and co-investigator of the peanut allergy study published in the New England Journal of Medicine.
  • Dr. Hemant Sharma acting chief of the Division of Allergy and Immunology, and director of the Food Allergy Program, Children's National Health System.

Great examination on newest findings about the peanut allergies from the 2015 LEAP study

Article courtesy from very useful allergy/asthma website, AllergiesAsthmaChildren.com.  


Breaking Down the Landmark LEAP Study: What Does it Mean?

By David Stukus, MD
Electric. That was the mood when Dr. Gideon Lack presented the LEAP findings to the audience at the American Academy of Allergy, Asthma, and Immunology. It was an honor to be there, and some day I may be telling allergists who haven’t even been born that I was there, like a classic 7th game of a World Series or the recent Super Bowl. By now, almost everyone concerned with the peanut allergy epidemic knows: Dr. Lack and his colleagues George du Toit et al have completed a study showing that they may have found a way to wind down the epidemic a bit. The study has seized the imaginations of health care reporters all over the world. But before we declare victory, let’s take stock of what we know and what we don’t.
Bamba: The snack that started it
Bamba: The snack that started it
The numbers tell a familiar story: Food allergy in children has doubled in the past 10 years, and peanut allergy has nearly quadrupled since 1997. For the roughly 2% of children in the United States currently living with peanut allergy, managing their allergies demands significant lifestyle modification and constant preparation for accidents. Needless to say, quality of life often suffers for parents and children.
Most recent research has focused on treatment, but these results have not been definitive or quite as promising as we had hoped. Causation is another matter. The big picture is too big—the way we eat, the way we drive, the way we grow our food, and the way we treat illness. But what if we can prevent peanut allergies from occurring in the first place? What if we can do something if not for the current generation of food allergic kids, then at least for the next generation? That’s exactly what the researchers involved in the Learning About Peanut Allergy (LEAP) study sought to find out.
As the dimensions of the food allergy epidemic really started to take off, the conventional wisdom for how to prevent these allergies has shifted repeatedly. In 2000, the American Academy of Pediatrics (AAP) recommended that parents refrain from feeding peanuts to infants at high risk for atopic disease until 3 years of age. However, peanut allergy continued to rise, which sent many physicians to reconsider. Careful review of the literature revealed very little, if any, evidence to support the guidelines. In 2008, the AAP published new guidelines in 2008, which in medical terms is overnight, retracting their previous stance, and declaring there was insufficient evidence to avoid peanut and other foods until a certain age, confusing pediatricians and parents alike.
In the midst of these changes, George du Toit, lead author of the LEAP study, identified a dramatic difference in peanut allergy between Israeli children and a similar population of kids in London. What was the difference? Israeli children almost universally consumed a snack called Bamba, prepared with peanuts, during infancy. The British researchers shifted their strategy from avoidance to early introduction. This was all speculation until the LEAP study results were released on February 23, 2015.
Before I dissect the LEAP study, there are a few extremely important things to understand about these findings:
  • This was not a study looking at treatment of children with peanut allergy. It does not offer insight into a cure and is not applicable to anyone who has had prior allergic reactions to peanut.
  • This should NOT be done at home! Every single child enrolled in this study underwent skin prick testing AND physician supervised oral challenge to peanut. Don’t experiment on your infant!
  • The children enrolled in this study were all less than 12 months old, living in the United Kingdom, predominantly white, had severe eczema and/or egg allergy. This must be considered before extrapolating results to other populations, i.e. older children or African American infants in the U.S. with multiple food allergies.
  • This study looked at very specific infants with severe eczema and/or egg allergy. There are other risk factors to consider (namely presence of other food allergies such as milk, wheat, soy and/or history of wheezing) that may have variable effects on this protocol.
  • The cut off point chosen as upper limit for inclusion by skin prick test size was a 4 mm wheal. There are many infants deemed at risk but will have larger skin test findings. The results of this study cannot be extrapolated to this population.
Now for the study findings. In my opinion, this is one of the best-designed research studies I have read, both in regards to study design, but also by incorporating solid and proper outcome measures. 640 infants aged 4-11 months old (median age 7.8 months) were divided into two groups: those with negative skin prick tests to peanut and those with mildly positive skin tests to peanut, as defined by a wheal size of 1-4 mm. Ten percent of infants were excluded from the study due to wheal size > 4 mm.
These two cohorts were then randomized to either completely avoid peanut or eat Bamba or peanut butter (the equivalent of 8 peanuts per serving) three times a week until 5 years of age. Every infant randomized to eat peanut then underwent an oral challenge before starting the study to ensure they would not have an allergic reaction. One child with negative skin prick and 6 (13%) children with mildly positive skin prick tests had reactions during challenge and were reassigned to avoidance categories. This is exactly why consultation with a board-certified allergist is paramount before trying this at home – children at risk will need to have skin test and/or oral challenge to ensure safety before incorporating peanut into their diet.
The primary outcome measure was proportion of children who reacted to an oral challenge (gold standard to diagnose food allergy) to peanut at the age of 5. Secondary outcomes included immune markers. Ninety-eight percent of participants remained in the study until completion, which is astounding for a study of this magnitude. There was no significant difference in the rate of serious reactions between the two groups, and only one needed epinephrine. Most reactions were mild to moderate.
Major take home points: An 86% relative risk reduction in peanut allergy between infants with negative skin prick test who regularly consumed peanut compared with those who avoided peanut. Furthermore, there was a 70% reduction in peanut allergy in infants with mildly positive peanut skin prick test (sensitized) who consumed peanut compared with those who avoided.
By the age of five, among the 530 infants who initially had negative skin test results, 13.7% of those who had strictly avoided peanuts developed a peanut allergy, compared to only 1.9% of the children who had been eating peanuts.
Among the 98 infants who had mildly positive skin results, 35.3% of the avoidance group went on to develop a peanut allergy, but only 10.6% of the babies eating peanuts. Impressive, but not 100% effective.
Monitoring adherence to the protocol is crucial for any research conducted largely away from the laboratory. The researchers not only used food diaries, which can be fudged, but also objective measurement of levels of peanut protein in the beds of children in each group. They found significantly more peanut dust from those who were eating peanuts, and estimated 92% adherence for all participants. Furthermore, immune markers were followed over time for all groups. A significant increase in baseline peanut wheal size on skin testing was observed only in the peanut avoidance group. Serum IgE levels increased in both avoidance and consumption groups over time, but there were fewer participants in the consumption group with very high IgE levels at 12, 30 and 60 months. Lastly, levels of peanut-specific IgG and IgG4, the immunoglobulins associated with tolerance, were higher in the consumption group than in the avoidance group. This mirrors the effect seen with standard allergy shots.
So, what does this change? Most importantly, the study demonstrates for the first time that both primary (no sensitization) and secondary (sensitized, not allergic) prevention can occur with early introduction of peanut. There clearly exists a small window of opportunity in which frequent consumption can promote tolerance. It remains to be seen whether this is due to desensitization, i.e. oral immunotherapy, or true prevention, but the authors are already investigating this through their next-phase “LEAP-On” study. For LEAP-On, the participants from LEAP who ate peanut and were not allergic will now stop eating peanut completely and undergo challenge 12 months later. We all can’t wait for those findings!
What does this exciting news mean for the rest of us? I don’t advocate for pediatricians or families to try this without having important information such as skin prick size and oral challenge results, which only allergists can provide. As for working allergists, especially pediatric allergists, they ought to be on the drawing board right now thinking about how to incorporate this new data into their practices. Many families will be discouraged by these thoughts, citing poor access to pediatric allergists. This puts additional responsibility on allergists to find ways of collaborating more closely with pediatricians to enforce higher standards of treatment even as they expand their outreach. Every single study that has enrolled children for food allergy desensitization, treatment, and now prevention has used very specific entry criteria. This method, however low-tech, should be just as conscientious. Even in the research setting, participants still experience allergic reactions. Keep in mind, this study limited participants from those without high risk for development of allergic disease, which we’ve been trying to communicate since 2008. Whenever an experimental therapy is adopted there will always be pressure to step over the line. This study may be called LEAP, but it’s still only one step.
David Stukus, MD, is board certified in Allergy/Immunology and is an Assistant Professor of Pediatrics at Nationwide Children’s Hospital and The Ohio State University in Columbus, Ohio. His clinical and research interests focus on asthma and food allergies, especially improving education and adherence for patients and families. As part of his research, Dr. Stukus has created novel technology and educational tools using mobile health apps to improve the care of patients, for which he was recognized with the Nationwide Children’s Hospital Department of Pediatrics Junior Faculty Award in November 2013. Dr. Stukus has been an active member of the medical advisory team for Kids with Food Allergies since 2009 and was elected to the Board of Directors for the Asthma and Allergy Foundation of America in 2014. Lastly, Dr. Stukus actively engages with food allergy support groups and participates in social media on twitter through @AllergyKidsDoc. 
- See more at: http://asthmaallergieschildren.com/2015/02/25/breaking-down-the-landmark-leap-study-what-does-it-mean/#sthash.0B0DFhvH.ZidqaGGv.dpuf