Trust and Food Allergies

The candles are off the cake, slices served to eager children.  A little girl has her fork by her mouth, a small bite of cake hovering and awaiting a response.  She was dropped off to the party, so there’s no one in particular for her to ask, so her tentative voice asks no one in particular. . .

“Does this have tree nuts?”

I ask her if she’s allergic, she says she is.  I ask her if she has her EpiPen and she pauses and then reveals she does not.  She really wants the cake.  She seems to regret asking the question.

I can’t get it out of my mind, what would I want another mom to tell my child?  How can I frame this in a way that doesn’t come off as judgmental because I am not in that other family’s shoes and I don’t know what advice they follow to manage allergies?  As I contemplate the situation a few things converge – food allergy awareness week, whether I’m quick to discount lay advice online, and community generated parenting advice.

First, we’re almost upon “Food Allergy Awareness Week” – I will actually be away from my own family for a few days to present at a conference in Orlando as a one-third representative of the Allergy Law Project (“ALP”).  I was invited because of ALP and will be reimbursed for my air travel and will have a room provided (see, there’s my disclosures at work). That has me contemplating audience – who are we trying to reach in an awareness context – could it be diagnosed individuals as much as people who may not know about allergies except for seasonal ones?

Second, a friend has made some very cogent points about a concept floated in an ALP post where we discussed non-lawyers dispensing legal advice.  She cautioned me that in law, medicine, and the like, we can’t discount the power of community information shared by informed individuals who have lived a given scenario.

Third, I’ve been reading the book “Parent Hacks” by Asha Dornfest – I pre-ordered a copy of my own but also received a review copy and Asha’s site and book have elements of empowerment and community based information that had me thinking about the tips, recipes, and more that food allergy parents share on social media and elsewhere.  (I reviewed the book on Amazon, so you can see my specific thoughts there via this affiliate link.)

Does anyone recall the part in Donald in Mathamagic Land where Donald Duck is advised to tidy his mind?  I’ve viewed my mind that way often – jumping to and fro – so blogging is often a way to achieve some organization.

Source: The Encyclopedia of Disney Animated Shorts
Source: The Encyclopedia of Disney Animated Shorts

Unrelated aside, well, aside, these things connect for me but they probably appear hodge podge to anyone else.  I promise I’m going somewhere with this.

A few things I know, in relation to the thoughts above:

  1. Communities have power, especially through the internet, to share useful and even life saving information.
  2. There are awareness battles to fight within a community as well as without.
  3. Bringing together 1 & 2 is a matter of safe spaces, supporting one another, and cogent discourse.

When there was nowhere else for me to go, there were blogs and other forms of social media.  Perhaps my law license gives me a little more ability to dig deeper into what I read, but I absolutely am sure the first place I heard about 504 plans was on a food allergy mom blog.  The first book about food allergy I read was Robyn O’Brien’s The Unhealthy Truth from our local library.  Who am I to discount parent based medium when it helped me so directly?  Well, there’s a balance, much like when I rambled on about FTC dot com disclosures.  Common sense comes into play with any information you read about online, in the news, or elsewhere – but the scaffolding we each build upon is different.

I was at a self help center “ask a lawyer” meeting and the prospective client had some bad experiences with attorneys.  She wanted my advice as an attorney but not representation by anyone because of her bad experiences.  I can’t fault her.  The same would go for a person who had a bad experience with an allergist or professional who was not an adequate shepherd of their trust.  Which all goes to say that I don’t fault people for looking elsewhere when they may have reason to believe they aren’t getting the truth from a segment of professionals.  But we can’t move from one extreme to another.  I wouldn’t presume to say a food was “safe” for another child, I can only know what works for our family – and yet you’ll find people posting online “we have x, y, and z allergies – is food abc okay?” and relying on the responses.  Is the asker or the answerer more at fault in that scenario (if any fault were to be placed)?

We have a responsibility to share accurate information about food allergies because we live it every day, but with the appropriate caveats we can share as well as protect one another.  For example, let someone know the limits of advice (“this worked for us, your mileage may vary” versus “this is how it is done”).  Community message boards, forums, and even facebook can all be very effective awareness and advocacy tools but we should disclaim and warn wherever appropriate.  I do see this form of appropriate disclosure quite a bit, but there are some situations where people become defensive and hostile if asked to clarify their experience or acknowledge the limits of their advice.

This leads me to thinking of my presentations next week at the FARE Food Allergy Conference in Orlando.  Mary and Laurel both have conflicts and can’t attend so it was up to me to carry the Allergy Law Project banner, so to speak, and take this great chance to reach others within our allergy community to share our resources and mission.  I know, however, that these are well informed individuals at different stages in their out advocacy journey and I would not presume to imply that their personal experiences are diminished in the face of the letter of the law.  On the flip side, I do think I want to address how to recognize when one is maybe out of their depth and needs more resources.

Just as physicians bemoan the snake oil salesmen of the world, lawyers do get frustrated at the harm that can be done when someone gets bad advice.  That said, bad advice can come from lawyers just as it comes from lay people, but professionally there are remedies for people harmed by bad advice from a lawyer.  You have reason to believe a higher expertise is at play, after all.  The next layer of complication though comes from giving a presentation as a lawyer, or writing an article, and the recipient changing the message or making it their own.  If I talk about 504 plans or rights under the ADA, I do want people to feel empowered to advocate for themselves.  I really do.  But I wouldn’t ideally want them to claim some authority if they share that information with another person.

Back to the little girl at the party, a lot of this comes down to trust.  Who we trust and how.  Whether trust is enough – we can trust that we won’t get in an accident or we can also wear a seatbelt.  We can trust that a label is accurate or we can also carry epinephrine.  We can trust that a school administrator is on the side of our child’s safety or we can advocate for a 504 to supplement what are hopefully already sound school policies.  What we should avoid is implying that something is a safeguard when it is just a shared experience -the audience doesn’t always have the ability to tell the difference so it is up to the speaker to relay that to the listener proactively.  That is simply being a responsible person.

At the outset of any business relationship, I tell clients, there’s a point where everything is going to be great – you and your business partner get along great, you trust each other, it is simply going to be awesome.  And then down the line people change and circumstances change.  At that point there’s an appreciation for the operating agreement that seemed so specific and pessimistic.  If you’re the one to point out to a fellow allergy parent, for example, that maybe they shouldn’t send their kid to a birthday alone and without epinephrine, you have a situation ripe for conflict.  Allergy Awareness Week is a time and a chance to share information and perhaps reach people within the community who have received poor advice or who are relying on sources who are not responsible about the effect of the information they provide.  People should absolutely have access to resources to represent themselves, they just shouldn’t be effectively representing someone else outside of their own sphere.

While I’m in Orlando, by happenstance, Asha from Parent Hacks will be stopping on her book tour and I really hope I can make time to go meet her because her community based website has been such an inspiration to me as a blogger.  She always keeps her own voice, even if something is sponsored, because she discloses whenever a concern could be raised and is not afraid to spark discussion.  I remember when she wrote about the pressure parents can feel about Valentine’s Day.  She suggested that we remember what our children feel about what may simply be a Hallmark holiday.  But she made no apologies for not being a fan of the day when her kids were small.  She didn’t claim that her approach was better or worse, she just offered her personal insight.  That is the power of blogging and community based information.  Putting something out into the world without judgment but so that someone else maybe sees their own struggle put into another’s words.

I hadn’t really looked through the Parent Hacks book when my ordered copy arrived because because I’d been in the middle of some health issues at the time and everything about life and the universe pretty much managed to put me in tears.  And then I saw this…

To Caron Arnold, Sara Carlstead Brumfield, Kara Hagen, Tracy Hengst, Adrienne Jones, Jim Jones, Elana Kehoe, Stu Mark, Rob Monroe, Duane Morin, Heather Petit, Jill Pohl, Kendra Riemermann, Marjorie Wheeler, Homa Woodrum, and the readers of ParentHacks.com. This book and my gratitude are yours. We made this together.
“To Caron Arnold, Sara Carlstead Brumfield, Kara Hagen, Tracy Hengst, Adrienne Jones, Jim Jones, Elana Kehoe, Stu Mark, Rob Monroe, Duane Morin, Heather Petit, Jill Pohl, Kendra Riemermann, Marjorie Wheeler, Homa Woodrum, and the readers of ParentHacks.com. This book and my gratitude are yours. We made this together.”

And I teared up anyway.  There’s something amazing about feeling like you are friends with someone you’ve never met in person and then somehow having your life weave into theirs in something so concrete as a book you can hold in your hands.  A book that is about bringing a parenting community together with tips, tricks, and “hacks” to make taking care of kids a little easier.

There’s this larger parent community with islands of compassion and support like ParentHacks.com and I think there are those islands similarly in the food allergy world in the form of in person support groups, conferences, meetings, KFA, FARE, social media groups, and more.  The tone we set is important and the information we give is as well.

Like Asha, my gratitude is this community’s.  I can’t wait to meet some of you next week and share my hopes for continued legal safeguards, labeling, and the strong food allergy community at large.  Hopefully I’ll figure out what to do about the little girl from the party in the process – I need advice on that front for certain.  Thank you to FARE for this upcoming opportunity and for embracing the independence that is at the heart of the Allergy Law Project‘s mission.

Statement From FARE Regarding Sesame Labeling

When I wrote about my experience on May 13, 2015 lobbying for sesame labeling in Washington, D.C. I was still awaiting statements from food allergy organizations in hopes that they would support the Citizen Petition of CSPI on the FDA’s docket.  The Citizen Petition is open for comments until May 25, 2015 from what I’ve heard so if you wish to register support as an individual, you can do so here: http://www.regulations.gov/#!docketDetail;D=FDA-2014-P-2035

What follows is Food Allergy Research and Education‘s statement in response to my inquiry.  My hope was for a resounding statement of support for CSPI’s November 2014 Citizen Petition but there may be interests at play that I don’t fully understand as a layperson in this arena.  It does sound like FARE might have independent plans regarding FALCPA that I will follow with keen interest.

Screen Shot of http://www.foodallergy.org/allergens/other-allergens#seed
Screen Shot of http://www.foodallergy.org/allergens/other-allergens#seed

Special thanks to Anna Luke, Manager of Online Community for FARE for going above and beyond to secure the following statement just after a busy period of time post-FARE conference in California at the end of Food Allergy Awareness Week.  Thank you, Anna!

The title below is mine, but everything after that is unedited and complete as provided to me today via e-mail:

May 22, 2015 Statement from Food Allergy Research and Education Regarding Sesame Labeling

Sesame allergy can be severe — individuals who are allergic to sesame can experience potentially life-threatening reactions such as anaphylaxis. A 2010 survey showed that hundreds of thousands of Americans are affected by sesame allergy, and several reports have shown that sesame allergy has increased significantly in the worldwide population over the past two decades.

Currently, the inclusion of sesame as a stated ingredient in processed food is not explicitly regulated by the U.S. Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA), making it difficult for those with sesame allergy to determine which products may contain this allergen.

Given the importance of education and awareness about this important health issue, FARE will be releasing new information and resources regarding sesame allergy in 2015, including a webinar dedicated to sesame allergy and a tip sheet on how to read a label to help consumers determine if a product contains sesame.

Improving education and awareness are critical first steps, but FARE is also engaged in advocacy efforts to determine how FALCPA can allow for the addition of new common allergens, including sesame and other seeds. FARE is committed to working directly with law makers, government bodies, and our food allergy community leaders to advance these efforts to help improve the quality of life and health of patients with sesame allergy.​

Update as of 7/1/15:  FARE has issued a statement of support on their blog: http://blog.foodallergy.org/2015/07/01/fare-supports-calls-for-addition-of-sesame-as-a-major-food-allergen/

A Brief in (Semi) Brief – Understanding the Amicus Brief of FARE and COPAA in T.F. vs. Fox Chapel Area School District

I was excited to see that FARE (Food Allergy Research and Education) posted their Amicus Brief recently filed in TF and DF and TSF v. Fox Chapel Area School District for download on their blog.  Speaking with other allergy advocates, many had seen the brief go up but had not had time to read through.  I found it to be a great overview of food allergy accommodations in federally funded schools and had the idea to try to distill the brief into a post in honor of Food Allergy Awareness Week (starting tomorrow, May 11, 2014) here in the United States.  I tried to also cover some questions people may have, like what an Amicus Brief is, and why there are citations to cases as well as parts of the US Code in the brief.

Remember that briefs and settlements are not binding precedent (I see some people cite the Lesley University settlement as binding in other cases) and analysis of food allergies as a disability are a very individualized thing even if we can all agree that food allergies are a disability.  For example, in a private daycare, you could use the Americans With Disabilities Act to seek accommodations for your child but the factors and balancing at play could very well leave you having to look elsewhere for services.  With federal money involved, however, your chances get significantly better.

Generic policy does not meet the requirements for a free, appropriate public education under the law. The major theme is individualized planning, from inputs to process, to outcome. As an aside, for most lawyers there are three answers to any question: Yes, No, and It Depends – individualized case by case planning falls in the third category. As a parent of a child with multiple food allergies and also one aware of the co-existence of other issues unique to each child, I think the brief is a great resource.

Amicus Brief re: TF and DF and TSF v. Fox Chapel Area School District (download the original brief here)

From the caption we can tell the case was initiated by a minor and his parents against a school district. It is on appeal by the parents & child so we can guess that there was an unfavorable aspect of the decision below.  From the FARE Blog:

A federal judge previously ruled that the school district did not discriminate against the child in violation of Section 504 of the Rehabilitation Act, and that the school offered reasonable accommodations, and had not retaliated against the student’s parents when it filed a truancy petition after the parents withdrew their child from school. Among the accommodations that the school offered was special lunch seating at a nut-free table that was actually a single desk in the cafeteria. 

Amici Curiae

An “Amicus Brief” is one filed in a case not by anyone that is a party to the dispute but usually by organizations that have a vested interest in the outcome of the case. They can highlight unique impacts on their organization depending on the outcome of the case or just show support. Here, we have FARE (Food Allergy Research and Education) joining with the Council of Parent Attorneys and Advocates to support TF, DF, and TSF.

Table of Contents and Other Introductory Material

If you’ve had experience with your local court system, you may notice the greater formality in a federal brief. Ideally, we should all be well organized in our writing (headings, etc.) but you simply don’t always have time to draft the perfect document in regular motion practice. In other words, don’t hold your divorce attorney to the standard you see when you’re reading a brief like this.

Relevant Statutes and Regulations

They start off with 29 USC (s) 794. This citation tells you the title of the United States Code and the section where the provision quoted is located. The ellipses let you know portions that were perhaps not relevant have been removed. This provision of the US Code states that if you otherwise qualify (so subject to any exceptions that may apply from other laws), if you have a disability in the US, you can’t only because of your disability be excluded from, denied benefits of, or be discriminated against by/through a program or activity that receives federal financial assistance. It goes on to define what a program or activity would be, including educational agencies or a school system. Note that it specifically says in this provision that they have to receive Federal financial assistance. If you’re looking at this brief to apply broadly then you’re out of luck because a private school system would require you to find a different provision, if one exists, to apply to your circumstances.

Many times, the key here is knowing how the court gets jurisdiction on an issue, that is, how do they have the “right to speak” on the topic and bind the parties that come before them. For things to hit Federal Court, one great way is for an issue to be one of Federal Law.

Next up is 34 CFR (s) 104.33. We see that under Title 34 of the Code of Federal Regulations, Section 104.33 we can find the provision cited. Title 34 of the CFR is titled “Education” so that would also clue you in that you could look under that title for related subjects.

When laws are passed, they often set into motion a framework to make rules to apply those laws. So these are rules that are also binding under the law. This particular portion of the CFR states that a recipient of federal assistance operating an education program has to provide “free appropriate public education to each qualified handicapped person” in their area, “regardless of the nature or severity of the person’s handicap.” So we see from this that a school getting federal money can’t turn away a student even if they are handicapped and the accommodation for that handicap may be great. This is different than the American’s With Disabilities Act provision that a private entity that is classed as a “public accommodation,” such as a daycare, won’t have to accommodate a disabled individual if, among other things, it would be unduly burdensome or change the nature of the service they offer. Here, if you’ve got a school that is getting federal assistance they have to take a student on and figure out how to make it work so that their education is still free to the family and appropriate.

A subsection goes on to point out that “appropriate education” is defined to include any special services and aids to meet the person’s needs “as adequately as…” the needs of people non-handicapped person. There are more provisions about how to determine the placement procedures for a handicapped individual.

Title 34 of the Code of Federal Regulations, section 104.36 is an additional rule that provides for procedural safeguards, notice, opportunity for parents to examine records, a review procedure, and an impartial hearing with participation of the child’s parents.

Statements of Interest

This section details the resume of FARE and their focus on research and allergy education and is interested in the case because of a belief that “students with the disability of a severe food allergy have the right to individualized plans that ensures their access to education and safety while in schools.”

The Council of Parent Attorneys and Advocates is described as a nonprofit organization for parents of children with disability and those that advocate for them. They assist counsel for families on disability law.

Argument

The Importance of Protecting Students with the Hidden Disability of a Severe Food Allergy

Pretty much general statistics here, ones advocates are all too familiar with. Some that were new to me:
– Over 160 foods can cause severe food allergy reactions
– The Food Allergen Labeling and Consumer Protection Act also requires federal agencies like the CDC to monitor and research “the growing prevalence of food allergy.”
– Peanuts and Tree Nuts account for 50-62% of reactions and 15-30% of the fatal/near fatal reactions in emergency rooms.

Schools are Required to Develop Individualized (s) 504 Plans to Ensure a FAPE for Students with Disabilities

Before section 504 of the Rehabilitation Act of 1973, discrimination regarding disability was viewed by Congress as careless, not intentional. Now, under a section 504 claim, a student has to prove:

“(1) he is ‘disabled’ under the meaning of this Act;
(2) he is ‘otherwise qualified’ to participate in school activities;
(3) the school or the board of education receives federal financial assistance; and
(4) he was excluded from participation in, denied the benefits of, or subject to discrimination at, the school.”

Ridgewood Bd. Of Educ. v. N.E. ex rel., 172 F.3d 238, 253 (3rd Cir. 1999).

FAPE, or “free appropriate public education” (and individualized needs) to students with a disability so that they can participate in education. The protections of section 504 are procedural and include extracurricular activities as well with a mind to meaningfulness for the student with a disability.

The two procedural safeguards are that a person that is “knowledgeable about the child” to be part of the group evaluating their placement and that guardians have notice and opportunity to see the records informing decisions about placement.

An IEP may be needed, or a 504 plan, depending on the circumstances and even if other provisions are in place for the student.

The Court Should Require Schools to Develop Individualized 504 Plans for Students With the Hidden Disability of a Severe Food Allergy

A school can’t simply decide on a policy for all students with food allergy, they have to adjust to each unique circumstance with parental and expert involvement.

In 2011 the Food Allergy & Anaphylaxis Management Act (FAAMA) was passed by Congress to require national guidelines to assist implementation of plans for individuals to manage food allergy and anaphylaxis risks in schools. The individualized mandate appears again and again.

The brief is requesting that the court rule that 504 and IEP plans be individualized based on the regulations, case law, and United States Code. Schools can’t bypass families and administer a generalized policy if the court rules that individualization is the “minimal bright line rule.”

Components would include individualized accommodation for meaningful participation at school as well as an emergency care plan specific to the student. The factors requested for consideration are (1) medical history, (2) type and severity of allergy, (3) number of allergies, (4) atopic conditions, (5) mental health, age, and maturity, (6) any developmental or learning disabilities, (7) past bullying and harassment, (8) school nurse presence or absence, and (9) transportation needs.

____

Special thanks to Laurel Francoeur and Kim Pebley for the encouragement to drive this post forward.  I hope it is of use.  Special thanks also to my daughter’s teacher and her school, she is wrapping up her kindergarten year in the next month and we are truly lucky for the support and compassion of the staff, students, and other families when it comes to keeping her safe.

Also, check out our latest post over at FABlogCon.com, our Mother’s Day gift/Food Allergy Awareness Week contribution of a video session from last year’s conference entitled “Facing Adversity With a Smile.”  I make a teary appearance but to those that know me that isn’t a surprise.  I can argue cases just fine but when it comes to food allergies I get very emotional!   

Thank You: FARE Walk Directors Dana and Duane Gordin

Dana and Duane Gordin addressing the FARE walk crowd on November 2, 2013
Dana and Duane Gordin addressing the FARE walk crowd on November 2, 2013

I am still formulating something to write about the first Food Allergy Bloggers Conference that happened last weekend and thank yous are a huge part of the thoughts rattling around in my mind.  (I am loving everyone’s recaps!)  This thank you is a little time sensitive because Duane Gordin, part of the rock star FARE walk team that includes his wife, Dana Gordin, is running in the Las Vegas Rock ‘n’ Roll Marathon on Saturday, November 17th.  Duane has been training for a 4 hour finish for his 26.2 mile journey through Las Vegas at night and is carrying with him the names of FARE walk supporters for each mile he conquers.

Nevada State Senator Debbie Smith with Duane Gordin at the 2013 Nevada FARE Walk (image courtesy of Carolyn Moassessi)
Nevada State Senator Debbie Smith with Duane Gordin at the 2013 Nevada FARE Walk (image courtesy of Carolyn Moassessi)

Dana and Duane helped me find the South Point as our venue for the conference and introduced me to Chef Keith and so many other wonderful folks.  Dana and Duane – you are appreciated and loved!  As fundraising from the Las Vegas Walk is still open, I wanted to share this message from the Dana Gordin about the race on Saturday:

Here’s Duane’s extra motivation to finish the Rock n Roll Marathon in under 4 hours.  Thanks to the many who gave to help find a cure for Scott, Matthew and the 1 in 13 children with a potentially life threatening food allergy.  He has a list of each Team Gordin donor that he’ll use to motivate him during each mile of his 26.2 mile race.  (Due to anonymity requests, just initials here.  He has the full names on his list.) 

However, he doesn’t have any donor names for miles 1 thru 5.  If you haven’t had a chance to donate, please do so now and get your named added to his motivation list.  Donate at Team Gordin:

MILE INITIALS

1

<none>

2

<none>

3

<none>

4

<none>

5

 <none>

6

M. G.

7

A. B.

8

P. D.

9

S. C.

10

C. M.

11

R. S.

12

J. G.

13

J. W.

14

K. W.

15

R. D.

16

T. S.

17

B. H.

18

B.R.

19

M.K.

20

P. N.

21

D. E.

22

R. L.

23

A. S.

24

C. W.

25

J. M. G.

26

S. P.

Thank you so much for the tremendous support!!!

“An Emerging Epidemic: Food Allergies in America” and Nevada SB 453

If you follow food allergy topics online, it is likely you’re already aware of a television special funded by FARE and Mylan Specialty (makers of the “Epi-pen”) that aired this morning.  I watched the special, narrated by father of a food allergic child, actor Steve Carell, online (click here to stream the entire program, thank you to Selena of Amazing & Atopic for sharing the link).  It is called “An Emerging Epidemic – Food Allergies in America” which is very fitting.

I’ll admit to crying a few times.  When you identify so keenly with something it is hard to escape reliving scenes from your own life.  I wonder how the program will impact people that don’t live with food allergies.  I wasn’t sure what to expect when I pressed “play” – it certainly is not something you want to watch with little ones because it comes right out and talks about fatalities with images of hospitals and a child in peril.

I think the program put faces to the issue but the questions I get as a parent of a child with food allergies were glossed over a bit.  For example, I’d say people ask me why there is an increase in the incidence food allergy and what causes food allergy.

The special mentions the hygiene hypothesis, which is one our pediatrician brought up most recently at the children’s 3 and 5 year well visit.  I brought up a lot of the other theories that I’ve been reading about and she hadn’t heard of them.  So to not present any of the other theories might perpetuate the implication of parental fault (which may be my “mommy guilt” talking).

The coverage given to oral immunotherapy is promising and exciting but there are already reports that the gains in treatment may not be lasting.  I know I love disclaimers but ending on the note of one treatment may diminish the impact of the program’s message.  Then again, as a food allergy mom I want to feel hopeful, I want to feel like people are working to help further research and awareness.

I have been feeling unsure of whether it is the best thing to keep this blog going but there is a part of the program where Dr. Ruchi Gupta mentions her mission to achieve safety for her child and others and it captured why we share and reach out.

As I wrote previously, I gave a presentation at my daughter’s school about food allergies.  I was then asked to write something for our school newsletter recently on the subject of food allergies and I decided to cover the new epinephrine law passed this summer in Nevada (using some of my notes from last year).  I want to be sure I thank my husband, my mother in law, my sister in law, Jenny (Multiple Food Allergy Help & FABlogCon), Missy (Marketing Mama), Elizabeth (Onespot Allergy & EpiCenter Medical), Tiffany (Food Allergy Fun), Caroline (Grateful Foodie), and Dana (The Las Vegas FARE Walk).  Each of them reviewed drafts of the following at various stages and provided valuable feedback.  I love this community, I know I say it often but I really and truly appreciate the support!  

I don’t know if this will be included in the newsletter in its entirety but I wanted to share it here in case it is of use to any of you out there in trying to raise awareness and impact the safety of all in the face of “an emerging epidemic.”  If you need my citations/references to feel free to leave a comment and I’ll get them to you.

_____

IMG_0242

New Epinephrine Law Could Save Lives at School

During this summer’s 2013 legislative session, Nevada unanimously passed Senate Bill 453. The bill mandates that public schools obtain and have authorization to use injectable epinephrine (private schools are authorized but not mandated to obtain epinephrine). This allows them to save lives in the face of the rising risk of food allergies among children and anaphylaxis deaths nationwide. The New England Journal of Medicine has said that four of six deaths from food allergy occur in schools and are associated with delay in treating reactions with epinephrine

Anaphylaxis is associated with symptoms that may include hives, swelling, rapidly closing airways, and more. While not completely understood, anaphylaxis is essentially an overreaction by the immune system to any number of external triggers, including food. Estimates currently are that one in thirteen children suffers from food allergies. The most common food allergens are peanuts, tree nuts, milk, eggs, soy, shellfish, fish, and wheat. While some children might outgrow food allergies, they need protection at home, school, and play while their immune systems are so affected.

What does this development mean for students as they begin another school year in Nevada? Much like any person would obtain a prescription from their pharmacy, Nevada schools are now able and required to obtain and fill prescriptions for injectable epinephrine. Currently there is a program for schools so that each school can keep epinephrine injectors on hand without cost (the “Epi-pen” brand in this program). Discovery Charter School is making arrangements to obtain these free injectors to protect students and staff alike from known or undiagnosed food allergies. The Center for Disease Control reports that 25% of anaphylactic reactions in schools occur without a prior food allergy diagnosis.

During the legislative process, some wondered if epinephrine could cause more harm than good if used when it wasn’t needed but this is not the case. The side effects of mistaken use are mild and are greatly outweighed by the benefit of immediate use when needed. The only time giving epinephrine could be a problem is if a student has a heart disease but even so, physicians still feel that in a life and death situation, the epinephrine is worth the risk. So adverse reactions are rare and epinephrine is easy to administer to the thigh and even through clothing.

How does SB 453 help? In the case of an allergic anaphylactic reaction, epinephrine is most effective when used quickly. That means that a child who does not have their own prescription for injectable epinephrine would not even have the medicine at hand. The stock epinephrine could save that student during the delay in time for emergency services to arrive. Minutes make all the difference.

In Virginia, where a similar bill was passed, children have already had their lives saved because of stock epinephrine. A fifteen year old boy in Virginia was stung by a bee and two injections (the injectors are always provided in two-packs) stabilized him so that emergency personnel could assist him further.

I appreciate [my daughter’s school’s] embrace of training associated with food allergies and recognizing the signs of anaphylaxis. If you have any questions please feel free to get in touch with the school nurse. You are also welcome to contact me at [email]. Learn more about supporting the cause of awareness and a cure at http://www.foodallergywalk.org/lasvegas (the food allergy walk on November 2, 2013 at Green Valley Ranch’s The District is great for families — there will be a face painter, game truck, and more!).  I also encourage you to seek the assistance of a physician if you suspect your child has food allergies.

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School has been going wonderfully so far and it is the support of a caring community of staff, families, and friends that make all the difference.  Thank you for reading and being a part of that community.

Elsewhere…

Great Articles

On the food allergy front, there have been some great articles and posts recently that I wanted to highlight because they’ve enhanced my knowledge of the development of allergies:

Protect Your Digestion, the First Line of Defense Against Food Allergies by Dr. Eva Untersmayr – This article is fascinating, if I’d seen it before my presentation last week I would have had to mention it.  Be sure to explore the fantastic website AsthmaAllergiesChildren.com (the site’s founders will be at the Food Allergy Bloggers Conference, see the agenda for details).

From the outside in: How eczema could lead to food allergies by Iona Twaddell – I am trying not to let mommy guilt get to me when I read research articles but I do confess to wondering often whether using Aveeno lotion (which is oat based) with my daughter is related to her severe oat allergy.  I was directed to this article via the twitter feed of Anne F. Russell BSN, RN, AE-C (who will also be a conference speaker and helped us proofread the conference brochure I created… download the brochure here as a pdf – thank you Anne!).

Genetic glitch at the root of food allergies? by Jessica Martin, PhD – I love how Jessica breaks down concepts.  The other day she e-mailed me a detailed response to a question I had and hopefully you’ll see it on her Food Allergy Sleuth site soon.  When she bought a ticket to the conference I was thrilled because I can’t wait to meet her.

Food Allergy Walk and Food Allergy Bloggers Conference

I have a fundraising page again this year for the Food Allergy walk here in Las Vegas, Nevada on November 2, 2013.  I’m on the walk committee and also a co-founder of the Food Allergy Bloggers Conference that will be kicking off with the walk and running through November 4, 2013.  So it will be a big weekend for Food Allergy in Southern Nevada!  We need team members and virtual walkers are welcome!  If our team raises $1,000 before August 31, 2013 our team name will appear on the official walk t-shirt!  We’re just about halfway there, donate and/or join today!

(If you’d like to have a chance to win tickets to The Wizard of Oz at the Smith Center, check out the team page of Young Artists Supporting FARE – a $10 donation during their raffle period earns an entry.)

An Allergy Friendly Kickstarter Campaign

Ending September 10, 2013, here is a Kickstarter campaign that might be of interest – it involves a top 8 allergen free, vegan candy that I’ve backed and you may want to as well!  Premium Chocolatiers needs to raise funds for the equipment necessary to manufacture their vegan marshmallow coated with chocolate and candy.

Vegan, Allergy Friendly Kickstarter Campaign
Vegan, Allergy Friendly Kickstarter Campaign

The way the Kickstarter website works is that if the funds needed to achieve the stated goal aren’t raised, the campaign doesn’t get “funded” and none of the money pledged is charged.  They’re almost halfway to their goal with two weeks left and I’d love to see this idea take off.  $7 gets one bag of “No No’s” shipped to US addresses sometime hopefully in time for Halloween, so check it out here.

The VanSquigglebottoms-to-be

Something with a deadline that is a little further into the future is the fundraising campaign my friends Jessica (not the same Jessica I mentioned above) and Jeff have launched that involves changing their last name to “Van Squigglebottoms” permanently and officially if they raise $1,000,000.00 for Oxfam on or before December 31, 2013.  I hesitated to donate only because I like their names as they are but then I got to thinking that I love the positive approach they’re taking.  They care passionately about the causes associated with the less fortunate and they’re willing to do something off the wall to get the attention they feel this cause needs.  You can see their fundraising page here and I can assure you that even the smallest donation will cheer Jessica and Jeff on.  Even if all you can do is spread the word about their fundraising efforts, that may prompt someone else to donate.

Children’s Literature (and Music!) Reviews

Finally, it has been a while since I rounded up my latest Vegbooks.org reviews.  I’ve even had the chance to review some music which was a lot of fun.

Mind of My Own (CD)

Say Daddy

Where to Sleep

Steam Train, Dream Train

Memoirs of a Goldfish & Memoirs of a Hamster

Paper Son: Lee’s Journey to America

He’s Been a Monster All Day

Blink of an Eye (CD)

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School starts tomorrow and E turns 5!  It is exciting and surreal at the same time.  Have a great week, all!

“Food Allergy 101 & Caregiver Training” on February 9, 2013

epi

I wanted to share for local folks that there is a great opportunity to bring a friend, family member, or caregiver for the child in your life to a free training that will help them gain a better understanding of food allergy management!  Be sure to RSVP to fapelasvegas@gmail.com soon so that they know to expect you at:

Food Allergy 101 & Caregiver Training

The event is free, from 3:00 p.m. to 4:30 p.m. at St. Rose Hospital San Martin (8280 West Warm Springs Road, Las Vegas, NV 89113) on Saturday, February 9, 2013.

One thing we discussed at the last Food Allergy Parent Education group planning meeting was what would help FAPE families.  The topic of babysitting came up – how do you trust someone to watch your child with food allergies knowing how our own road to learning about food allergy management is so ongoing?  Also, there’s a feeling sometimes when you’re giving someone the breakdown of what to do in case of a reaction, or even just what food allergies mean for your family on a day to day basis, that they probably think you’re being “overprotective.”  This is a great training to address that.  Dr. Sean McKnight of Allergy Partners (he is the allergist for many of my friends and very supportive of food allergy awareness) is offering his knowledge to attendees to help them understand all the basics.  I haven’t heard one of his presentations yet myself but based on what I hear about past events, it will be well worth your time to attend.

Also, the next FAPE playdate is in Summerlin on February 5, so check out the FAPE Events Calendar page to get the details and RSVP if you are interested!

In other news…

  • Whether you are local or not, if you’d like to sponsor a booth or even get your name on the FARE (formerly FAAN) walk shirt for 2013, there is no time like the present.  I am trying to help gather support for the event in whatever way my schedule can spare so I thought I’d mention it here on the blog.  For a $1,000 sponsorship, for example, you get a booth and recognition on the walk shirt.  The event is fun (see my recap for 2012) and well attended (they are expecting around 3,000 attendees this year).
  • The Auvi-Q is now available in the United States and I am going to try to get a prescription filled for it soon.  It is an Epi-Pen (our Epi-Pen Jr. is pictured above) competitor that is voice guided and compact (see Jenny’s post about it and Caroline’s post as well – they were both able to preview the device recently).  The best news is that the company has a discount coupon right now that will make our epinephrine refill much cheaper this year and you can obtain it at: https://www.auvi-q.com/sign-up.  In a way, this is a perfect tie-in regarding the February 9th Food Allergy 101 presentation – the idea of a voice guided injector is promising because it would offer extra guidance to caregivers at a time when every moment counts.

There are so many dedicated folks out there offering their time and energy to not just care for their own loved ones with food allergies, but to educating others and raising funds for research, that it feels really exciting.  On the other hand, I do admit I have moments where my heart feels a little broken to consider the looming threat that food allergies represent for my children.  I know we are lucky that we can “manage” food allergies to a certain extent, of course, but as we prepare for our daughter to enter kindergarten this year I keep thinking of how life-threatening food allergies are impacting our family.

I don’t mean to not end on a positive note, so I will say that sometimes we aren’t active about something we care about because when the news all seems promising we figure it has been taken care of, that perhaps our help is not needed.  This is not the case.  The more I get to see “behind the scenes” in a field such as this, the more I realize that anything you or I can offer is going to actually make a difference.  For example:  I sometimes start conversations with people at the grocery store that seem to be having a hard time in the gluten-free aisle.  Yes, just like in a product commercial where a random stranger starts gushing about their favorite cough medicine, which is strange considering I’m an introvert (and yet I have a blog, I know).  At any rate, I was looking at site stats for the blog and this link was pointing to one of my posts.  It was a bookmark on Pinterest and the pinner wrote: “As I stared completely confused by the overwhelming types of flours in the market, this sweet woman toting her 2 kiddos went out of her way to help me figure out what was best for my allergen-free diet!”  Let’s just say, reading that made my day.

So, please RSVP at the e-mail above if you can make it to the training and if you have questions about contributing to the Las Vegas 2013 FARE walk, let me know!