P.O.K.W.A.S.P.A. (PARENTS OF KIDS WITH A SEVERE PEANUT ALLERGY GROUP

P.O.K.W.A.S.P.A. (PARENTS OF KIDS WITH A SEVERE PEANUT ALLERGY GROUP
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Friday, July 18, 2014

A consumer research firm researching Epi pen injectors to pay $ for working with allergy folks in North CA

Since I often post things on our POKWASPA blog I don't allow on FB, I'm going to post this message which came to me recently.

Perhaps there's folks in Northern CA who would care to participate in this study.

Hi Louise, I hope you don't mind me messaging you, but I was searching on Facebook Peanut Allergy and your group popped up on my screen. My names is Maria and I am from Northern California. I work for Interface Analysis Associates (www.interface-analysis.com) here in San Jose CA. My company is a consumer research firm and we study medical delivery devices in order to improve their safety, ease of use, and learnability. We are currently studying a new epinephrine injector and are looking for real users to participate in the study. It would be an in-person study in Saratoga sometime in July-Aug 2014. It would be either one or two 30-minute sessions and would pay $100 - $150 cash. All our studies would be completely non-invasive study – all injections would be simulated into injection pads. We are just looking for your feedback on the device and its instructions. I see that you are currently live in Los Angeles, but I was hoping maybe you knew of anyone out here up North who might me interested in participating. It’s a fun way to make a difference in the future of medical devices for children and adults, and to earn some cash. If you or anyone you know is interested or would like more information, please feel free to give us a call at (408) 834-8443. Thanks!

Wednesday, July 16, 2014

FOOD ALLERGY FAMILIES: Please sign this petition to MAKE SURE EPI PENS ARE COVERED IN THE AFFORDABLE HEALTHCARE ACT!!!

Lisa Kane began this very important petition which I had no idea was NOT already in place for all of us food allergy/peanut allergy parents:  Apparently epi pens are NOT covered in the Affordable Health Care Act as it stands:  WE HAVE TO CHANGE THIS.  

Please join me in signing this and forward to those who will also help sign, too.

Our food allergy kids need us to protect them every step of the way.  

So, let's make get it done.

Louise Larsen, founder Parents of kids with a severe peanut allergy.



Include Epinephrine Injectors as covered medication in the Affordable Care Act

    1. Lisa Kane
    2.  
    3. Petition by
      Glenview, IL


http://www.change.org/petitions/president-of-the-united-states-include-epinephrine-injectors-as-covered-medication-in-the-affordable-care-act?share_id=KtaGaXRmzV&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition


According to Food Allergy Research & Education (FARE), an estimated 15 million Americans have food allergies. This life-threatening disease affects 1 in every 13 children in the US, and this number continues to rise. A 2013 study by the Centers for Disease Control and Prevention found that food allergies among children increased by approximately 50% between 1997 and 2011.
 A reaction to food can range from an itchy mouth to a hive to anaphylaxis, a severe and potentially deadly reaction. Once an anaphylactic reaction starts, epinephrine is the first line of defense. Access to epinephrine can be the difference between life and death for a person with food allergies. If administered quickly enough, it can slow the allergic reaction and provide time for emergency medical personnel to arrive.
Children with food allergies must carry epinephrine with them at all times. These medications, while life-saving and vitally important, carry a steep price tag. A twin pack of Epi-pens, the most commonly prescribed epinephrine injector, costs $350.
There is no amount that a parent will not spend to ensure the safety and security of her child, but $350 for just one dose of medication is challenging to budget for. Furthermore, most families are required to purchase multiple epinephrine injectors -- one for home, one for school, etc -- and each one of these medications must be replaced each year.
We ask that you mandate that insurance companies pay for epinephrine injectors under the Affordable Care Act. Currently, insurance companies have to include some kind of prescription drug plan, but they have the option of choosing which medications they will cover and which they will not.
For people living with allergies, carrying an epinephrine injector is not optional. Epinephrine is more than preventative medication; it is potentially life-saving medication.
 ----
Food Allergy Research & Education: Facts and Statistics. (2014). Food Allergy Research & Education. Retrieved July 14, 2014, fromhttp://www.foodallergy.org/facts-and-stats

Thursday, June 26, 2014

Peanut Butter and Jelly, by Jennifer Zimmerman

I offered to post links for our POKWASPA members who keep a personal blogs dealing regarding peanut allergies (that doesn't involve promoting a product or sales) here on our group blog page.

So, below is a personal blog post from Parents of Kids With A Severe Peanut Allergy member, Jennifer Zimmerman!

Peanut Butter and Jelly
Our experience in a pediatric clinical trial using a peanut protein patch to reduce or cure peanut allergies. 

Thursday, June 26, 2014

We Got Our Patch!


It happened! 

Matt getting patch number one!

Matthew received his first patch this week! 

We headed to our appointment first thing Tuesday morning. We knew we were going to have to go to the hospital two days in a row, so we had decided to stay in the city overnight. It's only about an hour and a half from our home to Baltimore, but it's also our vacation week so we thought it would be fun to make it into a trip.

I had called our research coordinator ahead of time to see what kind of plans I could make. I needed to know if Matthew should expect to feel sick at all. Did he need to take it easy? Could he swim?

She said that we didn't need to take any special precautions, she didn't expect him to feel sick and he would be able to swim. Yay!

If your kids are like mine, it's not a vacation if the hotel doesn't have a pool, and while Matt is used to not doing things the other kids get to do sometimes because of his allergy, I didn't want him to be left out.

So I made our reservations, packed our bags and headed to Baltimore!

We had planned that one of us would take Matt to the Children's Center and the other would take Ryan and Jessica to Port Discovery Children's Museum a few blocks away. I volunteered to go to the museum, because it sounded much more entertaining than sitting in the pediatric ward for three hours!

My husband was surprised I chose not to go to the appointment. "Don't you need to go so you can blog about it?" he asked (a little tongue in cheek). I told him that no, I trusted him to go and take notes! Ha ha.




The Children's Center
 
Port Discovery Museum





So Dave and Matthew went to the hospital. After vital signs and an assessment, they put the patch in his left inner arm, then observed him for three hours (while he played video games of course) and then removed it.

The patch stays on for three hours for the first week, then six, then twelve and finally twenty four hours a day for the remainder of the study. 

After we remove the patch we are to wipe the area with a clean wet cloth and then observe. They showed us a log book with information as well as a place to record when and where the patch was placed everyday, and document any reactions he may have.

After the appointment, Dave and Matt met the rest of us outside the museum. I took a look at his arm and only saw the tiniest reddened area, which went away shortly thereafter.

We walked up to the Inner Harbor and had some ice cream. Well, four of us had ice cream, but as usual, the store uses the same scoopers to dish out the peanut butter ice cream as they do all the other flavors, so Matt couldn't have any. We would have just left, but Matthew was a good sport, as he so often is, and was happy to just buy two Cowtails instead.



Matthew settling for Cowtails while his little sister chows down.



Then we headed to the hotel and just relaxed, had dinner and swam. 

Matthew had no reactions at all, and seemed to feel completely fine the rest of the evening.

And so ends our first day! A seemingly uneventful vacation day for some, but for us it's the start of something potentially amazing!






Jessica presenting the "grandeur" of our hotel room.




The kiddos in front of the fountain at The Market Place, just outside the museum. They look mischievous because they were getting each other wet right before I took the pic!

Saturday, June 14, 2014

More important Peanut Allergy petitions to sign

https://petitions.whitehouse.gov/petition/change-labeling-laws-so-all-foods-be-labeled-appropriately-may-contain-and-manufactured-statements/nwrJn9k2

Monday, May 26, 2014

"EATING PEANUT," re-posts from the personal blog by POKWASPA member, Caryn Tatelli

POKWASPA DISCLAIMER:

This is a very articulate account of a mother's reaction to her daughter undergoing OIT treatment in the Chicago area.   

While POKWASPA has stated they will not endorse any kind of treatment for regarding treatment of peanut allergies unless proven safe by government sanctioned, mainstream authorities (such the National Institutes of Health and the Food and Drug Administration) we felt this particular window into this mother and daughter's journey could be very educational and instructive to many of us.

We are hoping and holding our breath that this medical journey does not cause any longterm harm to anyone as we want nothing but the best, safest, healthiest outcome for all involved.

Thanks for reading this disclaimer before reading on about this personal blog regarding Caryn Tatelli's journey with her daughter's OIT called "Eating Peanut."

Note:  Below are screen shots of the posts that the blog author originally posted a link to on our blog, I decided to be fair while moving her posts to our own blog, I would repost a screen shot of her post along with the comments from our FB page over a link to the same post found on her own personal blog.

In the future we hope they will continue to send us links to their personal blog at PARENTS.PEANUTALLERGY@gmail.com where we gratefully accept submissions of personal blogs to re-post on for our POKWASPA group on our own blog.













Susan
Photo by Julie Kaplan

Saturday, May 24, 2014

She's Afraid


She's concerned.
Worried.
Scared.
Afraid.

And I can only imagine what else...

Stressed?
Anxious?

How do I know this?  In all of her years of wearing Epi-Pens in fanny packs and then carrying them in her purse, Susan has NEVER, ever slept with them.  Friday night, for the first time ever, she did.  

I sent this picture to a small group of friends who are supporting Susan (and us) through this experience, with a short text message, explaining the significance.

A dear friend (who is also a social worker) observed that what Susan was doing was "situationally normal."  By sleeping with her Epi-Pens right next to her, she was (at least hopefully) gaining a sense of control and doing something that made her feel (more?) safe.  OF COURSE.

And, while I was deeply saddened to see Susan's Epi-Pens right there next to her -- because it proved beyond anything she has ever actually voiced that this journey is frightening -- I cling to my friend's descriptor:  "resilient.

And I have added a few descriptors of my own:  

Resolute.
Determined.
Brave.
Incredibly, undeniably brave.

Friday, May 23, 2014

It takes a superhero to change lives: We call her Mom: -- Zooey, Issue #20, May 2014

Honor of a lifetime!  A feature in ZOOEY magazine by who? By yours truly.

The feature is about my journey raising a child with a severe peanut allergy.  And it's just a taste of what my book is about.  I have been working on a book about everything I've learned in my seven years of founding and administrating a very active, fast-growing support group of nearly 6,000 thousand people called Parents Of Kids With A Severe Peanut Allergy.  A group of parents who find themselves in the very same boat of being new parents at the same time they also find themselves unexpectedly saddled with the additional burden that their beloved child can die from something needed to survive: Food.  That their children can be literally snatched away from them and ruthlessly killed by just the minutest contact with a favorite food found literally every where.  And just what is this ruthless killer that lurks everywhere?  It is -- drum roll -- peanuts.     

Yep. We are "Generation: Peanuts = Death."
Wow.  Did not expect that one.

As for reading this particular story here: Well, don't strain your eyes trying to read the print. It's from a pdf file and the reality is if you care to read it in depth, you can buy your own copy of Zooey, here. 
Zooey happens to be a pretty cool publication filled with cute vintage-inspired fashion, great decor tips with wonderful stories of inspiring people.

PS:  I'll let you in on a little secret.  It was my peanut allergic child, the one who inspired me to not only write this piece, but also to start the internet support group of almost 6,000 members called PARENTS OF KIDS WITH A SEVERE PEANUT ALLERGY, who introduced me to the very talented and gifted editor in chief of Zooey Magazine, Lucia Tran when she shot an editorial by for Zooey magazine in May, 2012.  You can see my then-14 year. old here. 


I don't always say this in my support-group, because not everyone wants to hear about other people's kids, when they are temporarily stuck and frozen with fear and anger and just getting started with grappling with the many stages of grief all parents go through after a diagnosis of a fatal food allergy.  I never know what stage of their process when they first arrive in my group, but the reality is peanut allergies do not have to put an end to living a rich, full life.  That life which you first imagined for your child prior to their diagnosis of having this life-threatening food allergy is not over with!  However, there is a very long process to go through before one can get there.  People can't rush the process.  There is a certain new set of skills to master and engage in before this kind of acceptance and freedom can occur.

We parents have a journey we are literally forced to go on alongside our allergic children before our child can be truly safe and sound.   It will take years of our intervention and training before it's actually appropriate for all food allergic kids to fly the nest and reach for all those dreams, again.   However, it can be done once you and your child become truly educated, completely re-trained about how to proceed with a new set of behavioral tools, a  new mindset, a new bottom line which can never be crossed, once you get to this place of acceptance and mastery of how to avoid the food allergens, then it's fine to pursue any dream as long as they never forget they have this condition and accept the tremendous burden and dedication of skills that goes along with how to survive it.  But, it can be done.  It just -- takes time.  

It's important for parents to hear this.  Living a normal life can be done.  Before you know it, one day your child is securely living a peanut-free life.  It will become their "new normal."   And their life-threatening food allergy will no longer be something to cry or get angry about, it will just be life as you know it.  That's the place to get to.  That place.  That's the new normal we need to strive for.  It's about acceptance and engaging in a new lifestyle of constant awareness that is for the rest of their life nothing can be eaten without the specific ritual of scrutiny on a food allergic child will understand.  And that's okay.  It's life as they know it.

The reality is, even though I have a severely allergic kid, but she is NOT a prisoner of that allergy.   Sure, the allergy is terrifying.  Yes, it is entirely unfair.  But, not everything in life is fair.  Life threatening allergies  are awful, but they do not mean a person needs to be a prisoner of their fears, nor does fear keep have a place robbing children of their passions and dreams.   

My peanut allergic kid overcame enormous fear to become independent, active, brave, active participant in her own dreams.  She went through many periods of depression and isolation and tremendous anxiety after several brushes with her own fragile mortality.  But, she is NOT diminished by her invisible disability, she is inspired to rise above her fears and still be the master of her own fate.  I won't enable a "can't do" way of thinking.  I feel life is all too short and we have to take advantage of every minute we have on this planet to grasp life and find our joy.

My peanut allergic kid is smart.  She has a plan.  She is strong and she is a survivor.  And she is not alone.  She is every child with a life threatening food allergy if they just stay focused, stay educated and not give up on their dreams for a brighter tomorrow.


And this article and the book to follow is just a taste of my story about how I raised her. 
(If you can't read the images, 'cause it's too small?  Oh well!  Just order your magazine here Zooey! :)





Friday, May 2, 2014

ALLERGIC TO NUTS: Short sketch from Inside Amy Schumer at Comedy Central (NSFW)

ALLERGIC TO NUTS
SEASON 2, EP 205 04/29/2014 VIEWS: 8,014

Stars Amy Schumer and Parker Posie.


Here's my response to Comedy Central's Inside Amy Schumer's show ALLERGIC TO NUTS. (NSFW)

"Dear Comedy Central,

This is so insulting I don't even know what to say. Making fun of people with a peanut allergy is the oldest and easiest thing to do. Middle school bullies are far more imaginative than this, and unfortunately 11 year olds are not writing for your show. They should be. They're usually much funnier without sacrificing humanity to get a cheap laugh. Making fun of peanut allergies is a cheap laugh. It's just so easy to do. Peanut allergies suck. A stupid little peanut can kill people instantly. It's even got a funny name. Everyone resents the crap out of those with food allergies for being such a buzz-kill when dining out. Wow.

So, by all means make them look like jerks worthy of killing for having the audacity to inquire from a waiter if there's nuts in their food. Going after those with a nut allergy is so easy to it's like shooting fish in a barrel. It only proves you are actually one of the least creative comedians in the industry. Larry David took on this subject and actually made it funny. As funny as one can make it. He didn't make the humor about the victim's pain, but the main character's attempt to help her. (Richard Lewis helped, though.) Even Comedy God, Louis CK, tried make Peanut Allergies funny in his stand up act stating "maybe people with peanut allergies should just die," too. However I found his joke fairly loathesome and little more than a cheap shot, as well.

But, I get it. I do. Comedians gotta ride the 3rd rail, however that's not where the comedy starts and ends. You don't sit there and say "what is taboo now?" and then trample on it. To be creative you need to put comedy into a context It isn't "funny" if it's merely shocking or vicious. That's not creativity. That's way too easy. Jokes rooted in the premise that "we secretly hate you and wish you'd die." is only funny only when there is nothing new left to say. If this is what mainstream humor calls acceptable entertainment, what's next?

The Inside Amy Schumer show is now squeezing some comedic milage from those with life-threatening nut allergies. They think it's funny that people who worry about dying from a common food or who asks a waiter about a meal's safety is so freakishly annoying that they deserve to be murdered. Humor based on the premise that because non-allergic people find those with nut allergies annoying, tedious or an inconvenience should just hurry up and die is not a message I'm comfortable with in the mainstream media. Really? Nut allergic people just don't deserve to live anymore? That's funny?

Louis CK probably agrees with Amy Schumer on this. Maybe it was only written after they watched his stand up since it's so similar in theory. They both agree killing off severely allergic people is not only hilarious but entirely fair game. Even if kids are the ones who are most at risk.

Well, thanks for reminding me Hollywood is still filled with assholes. Whoever wrote this is a complete asshole, which is "Hollywood-speak" for asshole. Look, Larry David was able to turn peanut allergies into real comedy. You're not Larry David. And good luck with whatever it is you are. -- Founder of Parents Of Kids WIth A Severe Peanut Allergy."

Your thoughts?

Thursday, May 1, 2014

Petition to make it mandatory to label any cross contamination top 8 allergens

https://petitions.whitehouse.gov/petition/make-it-mandatory-label-any-potential-cross-contamination-top-8-allergens-food-labels/t13zb40h

Monday, April 28, 2014

One mother's open letter to California lawmakers in support of SB 1266

I am writing in support of bill SB 1266!

My name is Louise Larsen and I am the founder and director of the online support group POKWASPA (Parents Of Kids With A Severe Peanut Allergy)   We are a large group of 5,300+ members, and growing larger every single day.

I live in Orange County, California, so this California bill is a subject near and dear to my heart as I am the mother of a severely peanut allergic child who nearly died in my arms after her first bite of peanut butter.

At the hospital I was informed by the ER they did not think they would succeed in keeping her alive from her peanut reaction and they asked me to prepare myself for this possibility.  That moment changed my  life.   Luckily our child was one of the lucky ones and she pulled through her severe anaphylaxis, but ever since that day back in 1997 I made it my mission to raise awareness of the dangers of anaphylaxis and severe peanut allergies.

Even though most people I personally know are aware of my food allergy activism, some parents have shared with me that even though they too have kids with severe allergies they don't carry an epi pen or have one in school for their child.

Their reasons for not having epi pens in place for their children in schools are varied.

On reason is fear.

Fear of calling attention to the child in that way.  Fear that the school will think the parent is a "helicopter parent" for identifying their child with a peanut allergy.   Fear of admitting to themselves their child really could die from just eating the wrong food.  Some parents tell me they don't have an epi pen for their child because they think getting a pen would just be too scary.  These parents explain that they don't want to give the allergies that much power in their life and they feel having an epi pen would make it too real.  They tell me they've just told their child not to eat the allergic food that's how they manage the condition.   Some parents have not even mentioned their children's allergy to the school at all.  Not to the home room teachers who supervise class parties and field trips.   Who will save these children's lives if there is an accidental reaction before their parent has filled their prescription for this medication and provided it to the school?

Another reason for not having epi pens in place for students in school is parental denial.

While these loving and well-meaning parents struggle to grapple with their personal issues about their child's potential anaphylaxis, their children remain at risk without life-saving medication every single day in our schools.  These kids do not have available to them the only thing that will save their life should accidental exposure occur.

All of these California children are left unprotected until the time that the parent finally accepts the reality of anaphylaxis.  But until the day comes when parents have epi pens in place for each of their allergic children,  these California students are at risk.  Parents may believe merely avoiding exposure will keep their child safe, but statistics prove otherwise.  As a food allergy activist I can assure you keeping kids safe 100% away from some foods, like peanuts, is nearly impossible in school settings.  Until the day we can ensure all California citizens handle life threatening conditions the same way,  we should stock epi pens in schools to protect all California students.  It's the only ethical thing to do while the world and parents struggle to deal with our frightening new reality about a rise in anaphylactic allergies, we cannot afford to waste time in taking action to protect those who would perish without having epi pens available when needing them.

Another observation from my years of managing POKWASPA (Parents Of Kids With A Severe Peanut Allergy) is this:   Life-threatening allergies are on the rise.  They are not going away, but they are more common every year.  Some people may not even know their child has an allergy to something until the day of the anaphylaxis.  Anaphylaxis also can happen at any age; it can happen to students as well as adults at school.  The incidence of life-threatening allergies is not subsiding and we should act now to protect lives, all lives of those who attend or work in California schools.

California can do more to protect it's state's students from sudden death from lethal and sudden anaphylaxis, and this bill, SB 1266, is a great step forward.

On behalf of the children currently enrolled in California schools without epinephrine in place for their severe allergies, I thank you and on behalf all the parents of POKWASPA (Parents Of Kids With A Severe Peanut Allergy) I urge California lawmakers to pass this bill.

You have the chance to help create this ground-breaking, life-saving law for kids with severe allergies, which I hope proves inspiring to every state in our nation who doesn't have a stock epinephrine bill in place already.

Thank you for your consideration.

Sincerely,

Louise Larsen
Founder, Parents Of Kids With A Severe Peanut Allergy

https://www.facebook.com/groups/POKWASPeanutAllergy/
http://parentsofkidswithaseverepeanutallergy.blogspot.com

Saturday, April 26, 2014

POKWASPA MEMBER IN PA REQUESTS FOOD ALLERGY PARENTS TO SUPPORT BILL TO PROTECT KIDS

From POKWASPA member and Pennsylvania resident Amy Fitzpatrick

Your action is requested to protect kids with severe food allergies

who ride school busses: They need this bill for all bus drivers 
to have permission to use epi pens. Read:


PENNSYLVANIA PARENTS:  Please contact your state representative and urge their support for HB#2049 so that our children can safely ride the bus to school.

Currently, most school districts subcontract out their busing services to private companies. Those companies do not allow their drivers to administer Epi-Pens for liability reasons. This bill extends the same good samaritan coverage to private school bus drivers that currently applies to teachers. 

Without this bill - without a driver willing and able to administer live-saving epinephrine to my daughter, she could die on the 30 minute bus ride to school. I know many of you are in the same position or know someone who is.

Your help is needed urgently, ASAP, like this weekend, now.

This bill will be up for a vote in the education committee: APRIL 30th.  (that's this Wednesday!)