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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Saturday, July 11, 2015

Tech Agriculture firm and North Carolina team create "new" allergen-free peanuts making our life even more maddening and scary.


“Studies have found every dollar invested in agricultural research returns $20 to our economy,"    writes Brian K. Mabry from the USDA’s Office of Communications.

-- Really?  So how about every dollar parents spend on ER visits and Epi Pens because nobody takes seriously peanut allergies?

Who is going to return dollars to our pockets for having to buy expensive life-saving meds every 6 mos, for  our children to protect them when they eat something they will soon  NOT be told is "safe," when there will be ZERO way to make sure that is true?

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According to Modern Farmer Magazine:

Allergen-Free Peanuts And More USDA Research


On June 24, the USDA released its annual Tech Transfer Report, essentially a very, very long explanation of how and why the USDA spends millions of dollars on scientific research each year. The USDA lists all the accomplishments that grants from the department have made possible, and it usually brings a few things to our attention.
This year, those include a project from North Carolina A&T State University that may allow people with peanut allergies to finally enjoy one of the world’s great legumes.
Thanks to a new partnership between North Carolina A&T State University and a Canadian tech-ag firm, hypoallergenic peanuts will be coming to stores soon. The process for creating these peanuts is remarkably simple. After roasting, shelling and peeling, the peanuts are soaked in an enzymatic solution that removes roughly 98 percent of allergens. It could well be one of the biggest advancements in food science of the past decade, and the USDA wants to be associated with it and other work that could be popular among the public. “Studies have found every dollar invested in agricultural research returns $20 to our economy,” writes Brian K. Mabry from the USDA’s Office of Communications.
This year’s Tech Transfer Report also shows an impressive diversity in subject matter. There’s a biological control of Asian citrus psyllid, which causes the disease known as Huanglongbing and was responsible for last year’s Great Lime Shortage. There’s a new method for pasteurizing eggs that relies on radio frequencies, and could provide a much faster and cheaper method for ensuring safe eggs. There’s even a way to measure the concentration of nitrogen in the soil—incredibly important, given the low quality of our soil at the moment.
You can read the entire report here.
Image via Flickr user UACESCOMM
FULL REPORT HERE:
https://www.ars.usda.gov/sp2UserFiles/Place/01090000/FY14_%20Ann_TT_%20Rpt.pdf

Monday, June 22, 2015

Caryn Tatelli and Susan's plan for maintaining OIT and keep ingesting peanut post the clinical trial.

The Plan...to Keep EATING PEANUT!

This is the e-mail I sent to the Principle Investigator and the other doctors and staff involved in the PRROTECT study at Lurie.  I am sharing it because it lays out our thought process and next steps clearly, and I know many people who have followed Susan's journey are interested in knowing what our plan is.  This morning, Susan joked that we will call this "Eating Peanut, Phase 2."  And...perhaps we will.


Dr. P.,

As Susan’s completion date for the clinical trial draws near, I wanted to write to thank you, Dr. R. and Dr. M – as well as (...) and (...) and the various other clinical trial coordinators we knew along the way – for all you have done to support Susan during the clinical trial.  While I know Susan did not achieve the level of peanut tolerance anticipated, we are thankful beyond words that she achieved the tolerance she did.  

As you know, we have been very concerned about Susan’s occasional inability to tolerate her daily dose of 2000 mg of peanut protein, as we wonder what that means when it comes to protection against casual exposure and/or cross-contamination.  Susan’s seemingly random anaphylactic reactions also leave us constantly just a bit on edge, always slightly uncertain about how she will tolerate her daily dose.  While I understand that with more than seven months of daily dosing at 2000 mg of peanut protein Susan should be able to consistently tolerate her daily dose, as you know, that has not been the case.  Clearly, Susan’s journey toward tolerance of peanut has been atypical, and we hope that her commitment to the clinical trial proves beneficial to others.

Since our last clinical trial visit, I have done extensive research and have spoken with a number of different people in the food allergy community (researchers, doctors and parents).  As you know, despite (or maybe because of) how difficult the journey has been, Susan is very clear that she wants to continue eating peanut.  While she is open to the idea of decreasing her daily dose in the short term, in the long term, she wants to be able to eat enough peanut daily that she does not have to worry about miniscule variances in her daily dose causing anaphylaxis.  While Susan appreciates the freedoms she is likely to have as the result of the clinical trial (she has already, for example, been to several movies in the theater and we are talking about taking a short flight), she wants greater freedom.

I have become convinced that if Susan is to achieve long-term true tolerance of peanut, we need to take a step back, to look at things differently.  I am interested, for example, in looking at Susan’s gut health.  I am concerned that some of the very medications added early in the clinical trial (to support her tolerance of peanut) might be interfering with her absorption of peanut.  I also believed the addition of probiotics might make a difference in Susan’s ability to tolerate peanut.  Recently, I have read some very interesting things about the importance of Vitamin D in the diets of children with severe food allergies.  While I do not know if the answer for Susan is as simple as any of the above ideas, I feel that we must at least try things differently.

After extensive research and discussion, we have decided to work with Dr. Sakina Bajowala, at Kaneland Allergy.  I understand that there are a lot of concerns about oral immunotherapy offered in a private practice setting, and some of those concerns are what led us to initially pursue treatment in a clinical trial for Susan.  That said, as the clinical trial draws to a close for Susan, we have become increasingly interested in pursuing a highly personalized treatment for Susan.  I have come to believe that the best way to get a specialized treatment approach is in a private practice setting with a doctor who has extensive experience in oral immunotherapy.  

We appreciated your approval of and Dr. R.'s willingness to co-follow Susan with Dr. M. (Susan's primary allergist), and want you to know that our decision is based on what we hope Dr. Bajowala can offer Susan.  I remain hopeful that Susan’s journey – while clearly outside the expected norm – is helpful for others, for surely there are others like Susan.  If you, or Dr. R., would like to co-follow Susan during her post-clinical trial care and treatment with Dr. Bajowala, she is amenable to that, and we would welcome the continuity of care.

Thank you again – while our clinical trial experience was more difficult than I ever could have anticipated, we now know the depth of Susan’s strength and the strength of her commitment.  Thank you for giving her (and us) hope.

Caryn

Insights into the OIT process via personal blog Eating Peanut: BIG BIG DECISIONS

Big, Big Decisions


It is a terrible, overwhelming feeling to realize that there are no goodclear treatment options for your child.  

(And let me take a moment to say that when I realized this, I offered up a silent word of thanks that my child was not facing a life-threatening illness, although I am constantly aware of the ways in which Susan's food allergies threaten and limit her life.  As overwhelming as this realization was, even at the time, I knew it could be worse.)


I have always known that Susan's peanut allergy was unusual in it's severity, and that is why I had such high hopes for the PRROTECT study.  I really believed that Susan might truly benefit from oral immunotherapy for peanut supported by Xolair...

And she has.

And yet, as the end of the clinical trial has drawn near, it has become increasingly clear that while Susan benefitted from the use of Xolair to support her desensitization to peanut through oral immunotherapy, we have fallen far short of where I had hoped we might be.

Actually, Susan has fallen far short of the course outlined in the consent for the clinical trial, too.  So, as much as I wish this were just about disappointment and a wish that Susan had gotten to a point where she could tolerate more peanut than she currently does, this is about something bigger -- this is about the question of what happens when a subject does not achieve what is expected during the course of a clinical trial.  This is about the question of what could, what should -- what can safely -- happen once the clinical trial is over.


I have spent hours [actually, I am sure, if you add up all the minutes, all the moments in which Susan's clinical trial experience has crossed my mind, momentarily (or, honestly, longer) distracting me...and all the time I have spent reading research, e-mailing with people, talking to experts, doctors, other parents...the tally is more like days, maybe even weeks]...contemplating the future.


Nearly eighteen months ago, we sat in a room in the Clinical Research Unit (CRU) at Ann & Robert H. Lurie Children's Hospital with a clinical trial coordinator and reviewed the consent for the PRROTECT study.  There was nothing new, as the clinical trial coordinator had provided us with a copy of the consent form prior to our initial visit.  Susan and I went through the consent carefully, as the clinical trial coordinator asked us to review it again there, before signing it.  I read.  Susan read.  Occasionally, we talked.  

Mostly, though, we just read.
There was nothing new -- but there was something...different...about sitting there, reading the consent, knowing that if (when) I signed it, we would be embarking on the first step in what I hoped would be a journey toward greater freedom for Susan.

That something...different...pulled my mind this way and that.

I remember -- ever-so-casually -- asking about something I read...or rather, didn't read.  The consent addressed the 8000 mg peanut challenge at week 31 (which later became a 4000 mg peanut challenge).  What it did not say was what happened to those subjects who failed the challenge.  And sitting there, in the serious space that the CRU is, I found myself thinking about that...turning what felt like an omission over in my mind.  What did happen to those subjects who did not achieve tolerance of 8000 mg of peanut?   The clinical trial coordinator was very reassuring -- explaining that really, every subject should reach "tolerance"...and that it was nothing to worry about.  

I pressed on.  
(Anyone who knows me well knows I always want to know...What if...?)

Well...What if...a subject doesn't achieve tolerance of 8000 mg of peanut protein?

I didn't like the answer, which was that if a subject failed the challenge (at the time it was 8000 mg of peanut protein, but by the time Susan reached Week 31 of the PRROTECT study, the challenge had been reduced to 4000 mg of peanut protein), the subject would not be allowed to continue eating peanut once the clinical trial concluded.

Oh.
Well.  
I allowed myself to be assured -- this kind of outcome was not the expectation.  
Perhaps in an exceptional case, the subject would not achieve the desired tolerance, but as the PRROTECT study was specifically designed for children with extremely severe peanut allergies (just like Susan), I allowed myself to believe that Susan would not be one of "those subjects."

I heard the clinical trial coordinator explain that "those subjects" would not be allowed to continue consuming peanut at the conclusion of the clinical trial.

I heard that...and I thought...even if Susan was one of "those subjects"...surely some tolerance would be better than none.  This idea flitted across my mind...unbidden and unwelcome...and I remember pushing it away, choosing to focus on the likelihood of success.  

And while I heard that...I also remember very clearly thinking that there was no way "subjects" who had achieved tolerance of peanut would actually be asked to stop eating it.  I found myself thinking that surely there had to be some middle ground...some way for "those subjects" to be allowed to continue eating peanut.

This idea of a "failure" flitted across my mind...unbidden and unwelcome...and I remember pushing it away, choosing to focus on the likelihood of success.  

MindoverMatter.
The Power of Positive Thinking.
(And all that).

But now that Susan IS "one of those subjects," not a "subject" but a child on the cusp of adolescence (becoming her own person), the reality is stark, and sadly underscores one of many problems with clinical trials involving real people.   

For while there is no protocol that allows Susan to continue eating peanut, how could anyone really ask -- or even expect -- Susan to stop eating peanut at this point?  And even if -- within the protocol and the guidelines of the clinical trial -- there is no space for Susan to continue eating peanut, how could we -- as her parents -- support anything other than Susan's continued consumption of peanut?

We have -- in the last 18 months -- seen Susan safely go to the movies...not once, not twice, but countless times.  We have even allowed her to go to the movies without an adult present.  Susan has started thinking about those ethnic foods she wants to try (the list is long -- with Thai, Indian and Greek topping the list), about flying (Greece is high on her list -- but I'm in for an over-ground-only flight only first!) and about ice cream, donuts...and baked goods.  I said it once, and I will say it before -- Susan is a foodie trapped in a food-allergic child's body.

I have heard that some "subjects" have not wanted to continue eating peanut.
But, Susan, is not a "subject" -- she is my daughter.

And she very much wants to continue eating peanut.

Despite the difficulties Susan has had (or maybe because of them), Susan has never expressed a desire to stop eating peanut.  She has never (even when she was eating the Nutter Butters she found "disgusting") complained about taking her daily dose.

How could we, as Susan's parents, support anything other than Susan's continued Eating (of) Peanut?


While I would much rather take the road more traveled when it comes to anything medical, I started examining roads less traveled.  And while the idea of a road less traveled alarmed me initially, I found myself warming to the idea...

As the end of the clinical trial draws near, the options have became clearer, and it seems like we have three distinct options:

1)  STOP eating peanut.  (Unimaginable to Susan, and, frankly, given what she has gone through, I did not see how we could ever, as parents, take a stance that required her to give up her hard-earned daily peanut dose, despite the risks it seems to carry.)

2)  STAY the course.  Keep at it.  Hope that, with time, Susan's body will come to more "gracefully" accept (read:  tolerate) her daily peanut doses.  While we never actually hammered out the details, with discussion, it became apparent that the doctors involved in the clinical trial would likely support Susan in continuing to eat some amount of peanut on a daily basis.  However, simply keeping at what we have been doing felt a bit like insanity.  If one thing has become clear, it is that Susan does not easily tolerate her daily 2000 mg dose of peanuts.  She has had several epinephrine requiring reactions to her daily dose over the last eight months, and a handful of concerning incidents (where we did not administer epinephrine, but watched ever so closely) -- the single episode of vomiting, the hives, the flushed cheeks and chest...

3)  TRY SOMETHING NEW.  Keep eating peanut, but re-examine things.  I have long felt that Susan barely tolerates (at times) her daily 2000 mg dose of peanut protein.  The random hives and flushed cheeks and single, seemingly random episodes of vomiting are, to me, constant reminders of the edge of the precipice upon which we walk.  I know the researchers believe that this far in, a minute variance in dose should not make a difference in Susan's tolerance of her daily dose, but I also know that Susan's experience is different.  For some reason that is not year clear to us, Susan does not reliably tolerate her daily dose.  As I gathered information and assessed options, I found myself wondering about the medications Susan takes daily (Famotidine, Omeprazole and Zyrtec), and wishing we could add probiotics and maybe even Vitamin D.  


In the weeks that followed Susan's second-to-last clinical trial visit, I reached out to many people -- doctors, researchers, pediatric allergists, parents of children living with food allergies, and friends who have followed our journey from the beginning.  I did more reading than I did before signing the consent for Susan's participation in the clinical trial (and I did A LOT way back then), and a plan started to form.

I am beyond thankful to those who gave of their time, who answered my questions, who helped me think things through.  I especially appreciate those who wear multiple hats -- parents of children with food allergies who are also researchers or allergists...and parents of children with food allergies who are also advocates of research.   Everyone agrees that there is no easy answer.  Everyone supports Susan's desire to keep eating peanut.  One dear, wise friend observed how fortunate we are that we have options, and the wherewithal to pursue them -- even if none of the options seemed quite perfect. 

In the end, we have what feels like a great next step.  We are in unchartered territory -- few "subjects" find themselves in the position Susan will be in at the end of the clinical trial -- with no clear "next step."  While I am sorry that Susan did not achieve the outcome desired in the clinical trial, I am thankful beyond words for the doctors and researchers who have gotten Susan to this point.  We are thankful for all that they did to get Susan to the tolerance of peanut she has achieved, and we are immeasurably optimistic about the future...

Friday, June 5, 2015

2015 Baccalaureate speech of graduating 2015 senior with severe peanut allergy: Talks about how growing up peanut allergic shaped her.






Won't even try to pretend I don't know this senior, I do. She's my kiddo.







I almost lost her before the age of two, and she's the one I started my successful Facebook group (pokwaspa the Facebook group and this blog) for.   She's the one!


She and I both taught each other how to best deal with this allergy and I wanted to share our journey with others, too.  To encourage and help them so we can all learn how to best raise a child with this food allergy.  She's who I did all of this for.  Her.  So the truth is, I couldn't be more proud of her right now,  if I even wanted to.   


She made it through so much in her short life, and along with that dreaded life-threatening food allergy to peanuts to cart around while she did so many other things, too.   We did it.  -- Well, no, she did it. Juliet did it all.   With grace, with dignity and hard work and a lot of determination.   She has had a variety of issues that did not go easily for her, but she never let any of them stand between her and her dreams, which I think is so important for all food allergy parents to hear.

Juliet will be graduating from Los Alamitos High School next week and was asked to give the baccalaureate speech last night.  

It was simply beautiful -- because it was from her heart about who she is, and why she is who she is.  (And guess what it had to do with? Peanut allergies.)   At least someone is telling the truth about how much this thing affects us, and she did so to her entire school last night.

She's headed for far horizons next year, too.  She's headed from California off to Barnard College of Columbia, in NYC.  (Class of 2019) and naturally she'll be taking her food allergy along with her.  However, after all these years of learning how to proceed with cautious but fearless courage, I know she'll be just fine because she's got a great head on her shoulders.  She's become the best advocate for herself and her allergy than there could possibly be.  

I had to share this with those of you in the peanut allergy community because I know every peanut allergy parent and kid will be able to relate to at least some what she says in her speech, which is why I've included it here on our blog.

Text of Juliet's speech below:






Juliet Larsen, baccalaureate speech, 6/4/2015

"Greetings Los Alamitos High school seniors, and company! 

...My name is Juliet Larsen. 

Some of you might know me as the girl who’s (sings) “all about Los Al.”

But before I transferred to this school in 10th grade, I was pretty much known strictly as “The Peanut Girl.” Talk about feeling like an outsider, it wasn't really until I got to Los Al that I even thought I had a chance of ever “fitting in.”

You see, I have an anaphylactic food allergy to peanuts that almost killed me when I was 15 months old; and since then, I’ve struggled with finding my own identity outside of being just “The Peanut Girl.” It was difficult for me to fit in when I was constantly terrified about that one bite of the Halloween class party cupcake that would send me to the hospital with my throat closing up or go into cardiac arrest from a sudden drop in blood pressure as happened when I was younger. Classmates thought I was too worrisome, and it was difficult to make and keep friends to say the least.
As I grew older, I tried anything I could to make a name for myself despite my allergies and the anxiety that always accompanied them. I tried basketball, acting, singing, volunteering, and eventually professional modeling. But none of them worked. I never fit in.

At the beginning of Sophomore year, I transferred to Los Alamitos just trying to get a fresh start – I decided I was going to just focus on academics, and I knew this school would give me the strongest education possible. And while it’s true that Los Alamitos did give me an academic training better than anything I could have ever asked for, the gifts I value most upon graduating are those that don’t show up on my transcript. 

I found teenagers that were always thinking about the world around them, and caused me to look at life from a different angle than I had before.

I saw students who gave every ounce of effort and dedication to their passions, from our back-to-back show choir national wins to our CIF champions.

I found teachers who valued me for the thoughts and beliefs I had, rather than whether or not my homework checks were written in nice penmanship.
I found support in so many ways, from entire schoolwide pep rallies to lunchtime club meetings to late night Starbucks study sessions while pulling all-nighters. 

Most of all, I found people who overcame their own challenges as well. I realized that I wasn’t an outsider, and for the first time, I felt like a part of a tight-knit community. 

I want to tell you all today that you all inspire me. Your struggles are valid, but your worth is so much more. 

To my friend who realized her worth is not defined by college acceptances, but knowing she did the best she could. You inspire me.

To my friend who lost his mother this year yet continues to keep positive and motivated to move forward every single day, you inspire me. 

To my friend who defies, even transcends previous stereotypes surrounding autism every day, you inspire me.

A few years ago, I didn’t know what the meaning of success was. But now I know it is about feeling accepted for who we really are, and having the support to be everything we strive to be. Our lives are ephemeral. And that’s why I’m grateful for every second, every minute, every tear, every smile. 

All of these moments at Los Al have been priceless to me, and I am so honored to be graduating with you – those who have shown me how precious and complex life is. 

The heart and soul I’ve seen at our High School inspires me every single day. It’s what made me get up every morning… no matter how early or tired that I was.
Today, I can’t help but be excited to see what each of our futures hold.

Congratulations, Class of 2015!

And thank you for letting me be me…"


And thanks to each and every other peanut-allergy parent out there who has helped me be the best parent I could be, too.

I do not think I could have done any of this without all of us in this far-flung family of peanut-allergy moms, dads, siblings, and of course, fellow peanut allergic kids to help me be the best parent I could be.

Thank all of you so much.

L. Larsen.

Wednesday, May 27, 2015

Collection of posts from "Eating Peanut" and one post from FARE in which Susan describes her OIT clinical trial in simple, easy terms: Educational read re: the process of clinical trials for those with peanut allergies

Several Posts from the Tatelli blog called "Eating Peanut" including one to raise funds for Susan's FARE Read-a-thon

"Self-Injecting Epinephrine" -- Susan's "A - Z Essay"

Susan had an interesting assignment over the Memorial Day weekend for her English Language Arts class.  The assignment was to write an "A-Z Essay" about a new experience or a "first."  The concept of an "A-Z Essay" is new to me -- and harder than it might sound.  In order to fulfill the requirements of this assignment, the essay must be exactly 26 sentences long, and each sentence must start with a different letter of the alphabet -- in alphabetical order. 


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

Video of Louise and Juliet (as baby )from 1998 in CBS local news about rise in peanut allergies

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:


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.



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