Disney’s “Frozen” Party Favor Idea

If you enjoyed my lightsaber valentine idea (glow sticks and Star Wars valentines), I have another idea that my daughter helped me come up with as we have been planning her “Frozen” themed 6th birthday.  When it worked so well she asked me to share it here.  Who knew the day would come when she’d say “can we post this on your blog, Mom?”  She is writing her own cookbook right now and you may even see some of those recipes in this space.

Frozen Bubble Favors

This doesn’t work with all cupcake rings, the plastic needs to be a little bit pliable, but it did work with the “Frozen” cupcake toppers we’d purchased on Amazon (amazon affiliate link or ebay search link) and these mini bubble bottles from Oriental Trading (search: hexagon bubble bottles and choose your favorite color).  Just work the ring over the top of the bubbles and there you go.  Easy peasy way to give a theme to the bubbles but also works as a food-free idea for party favors.

(For R’s 4th birthday we’re doing Chinese paper yo-yos and Power Rangers rings – his were too sturdy to work with bubble bottles.  I love August birthday planning!)

Clark County School District Procedures/Guidelines for Managing Potentially Life-Threatening Allergies

ccsn2014guidelinesscreenshot

Thank you to Dana and Duane Gordin, Principal Paula Naegle, and other parties that put so much hard work into making the CCSD Guidelines for Potentially Life-Threatening Allergies a reality.  These guidelines were 2 years in the making and made possible with support from the Food Allergy Guidelines Committee Members, key leaders of CCSD including the Board of Trustees and Superintendent, Food Allergy Research & Education (FARE), and those who participated in the Nevada FAAN/FARE walk in previous years.  The guidelines I’ve linked to below are the product of a FAAN/FARE walk grant and with Dana’s permission, I wanted to make the resource available here for download:

2014 CCSD Food Allergy Manual (pdf download) “Clark County School District Procedures/Guidelines for Managing Potentially Life-Threatening Allergies”

A copy has been sent to schools in Clark County (the district was ranked the 5th largest in the nation in 2012) as well as to local allergists.  The guidelines are 79 pages and cover everything from classroom activities to food service and laws of note.

Some highlights as I look through the document and am encouraged about the guidance Southern Nevada teachers, nurses, and other school employees receive:

  • “The emotional, as well as the physical, needs of the child must be respected.” – pg. 7
  • “Avoidance is the key to preventing a reaction.” – pg. 9
  • “Remember, students with food allergies are children, first and foremost. Do not ask them if it is acceptable to deviate from any of their individual plans. Be aware of signs of anxiety or bullying.” – pg. 11
  • Avoidance Measures for Insect Venom/Stings Allergic Reactions – pg. 13 (tips new to me included avoiding wearing blue and yellow or floral clothing and ensuring garbage is properly covered and away from play areas)
  • CCSD Regulation 5150 covers self carrying medications while CCSD Regulation 5157 covers nutrition concerns.
  • Page 24 has a school nurse checklist that would be handy for any parent meeting with a school’s nurse at the start of the school year.
  • Page 32 has a parent checklist for a school nurse to provide to a parent
  • “Every single person plays an important role in preventing food-allergic reactions, including the child with the food allergies.” – pg. 34
  • Page 35 has a teacher checklist.
  • “The student must not be required to wipe down his/her own area prior to eating to avoid accidental exposure to or ingestion of allergens.” – pg. 37
  • Page 43 includes the recommendation that cleaning supplies be marked specifically so that, say, a mop bucket used when mopping up peanut butter is not later used to clean an area meant to be free of a given student’s allergen. (A great detail I would not have considered.)
peanutfreesanitizer

Photo taken at Principal Naegle’s school in Clark County and included in the Guideline packet

  • Page 57 includes a bus driver checklist.  CCSD guidelines also prohibit eating on the bus (with a diabetes exception of course).
  • Page 62 has a resource regarding reading food labels.
  • Page 63 discusses “Constructive Classroom Rewards” and begins: “Rewarding children in the classroom need not involve candy or other foods that can undermine children’s diets and health and reinforce unhealthful eating habits.”  It concludes with two pages of suggestions of alternative rewards, including everything from privileges to trinkets/tokens.  The recommendations are taken from the Healthy Schools Campaign and adapted from the Center for Science in the Public Interest.
  • Page 73 references epinephrine auto-injectors Adrenaclick, Auvi-Q, and Epi-Pen, which is helpful since school employees may be familiar with one and not others as they go through the process of assisting families and students.

Dana and Duane Gordin are Southern Nevada food allergy advocates that for 5 years worked to direct local food allergy walks (first through FAAN, the Food Allergy Anaphylaxis Network, and then through FARE, Food Allergy Research and Education) in addition to testifying regarding stock epinephrine in Nevada and more.  One thing I didn’t know until I met Dana was that money raised by the national FAAN/FARE organization didn’t just go to funding walk operations and research activities, a small portion is used for local walk grants.  The Gordin family saw the need for training and education here in Clark County and worked hours upon hours to help make it happen.  Their eldest son graduated high school last month and their younger son is in high school so the impact of these guidelines is a wonderful parting gift!

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Updated July 15, 2014 – Debbie Bornilla, who first brought the then-FAAN walk to Las Vegas as a director and co-leader of our local Food Allergy Parent Education Group (FAPE) provided me with the full list of people that contributed to these guidelines.  Thank you all!

Cynthia Alamshaw, Principal
DeAnn Baker, Nurse
Virginia Beck, Director of Food Services
Abby Berhe, Operations Coordinator
Debbie Bornilla, Parent & FAPE Co-Leader
Gina Clowes, Director of Education FARE
Betsy Fuentes, Food Services Coordinator
Eleanor Garrow, VP Ed & Outreach FARE
Doug Geller, Director I of Transportation
Duane & Dana Gordin, Parents & FARE Walk Directors
Michael Harley, Chief Officer Compliance
Vicki Herman, Related Services Coordinator
Sally Jost, Director of Related Services (Committee Lead)
Rod Knowles, Principal
Connie Kratky, Eq. & Diversity Coordinator
Kimberly Krumland, Risk Management Coordinator
Gwen LaFond, Director of Guidance
June Likourinnou, Nurse
Karie Mulkowsky, FARE Grants
Paula Naegle, Principal
Daniel O’Brien, Attorney CCSD Legal
Greta Peay, Director of Eq. & Diversity
Irma Pumphrey, Health Services Coordinator
Roseanne Richards, Instruction Coordinator
Lynn Row, Director of Health Services
Bevelyn Smothers, Principal
Denise Thistlewaite, Director of Instruction
Linnea Westwood, Principal

Graphics for the Food Allergy Bloggers Conference 2014

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I’ve been having fun making some spotlight images for this year’s Food Allergy Bloggers Conference and thought I’d share what I’ve done so far here.   Just about 10 weeks until the event so I am hoping these build interest – previous attendees should know we’ve got a fresh mix of topics and speakers and new attendees should know they will be welcomed with open arms.  I saw someone online ask if this was the sort of event where they’d be staying in their room the whole time and to that I would offer a resounding “no!”

As a co-manager of the event, please feel free to contact me with questions if you are considering attending.  Be sure to follow the conference on Twitter or Facebook (or both!) to see new graphics as they come out.  I can also do another roundup in a couple of weeks.  Register to attend today!  If you’re local to Las Vegas, we can work out single day passes if those are a better fit, we also might still have volunteer slots open in exchange for passes.  Just let me know.

 

Alisa Fleming

Colette Martin

Dr. Ehrlich

Erica Dermer

Dr. Gupta

Henry Ehrlich

Keeley McGuire

Dr. Stukus

Susan Weissman

vitamix

Lynda Mitchell

Uncommon Allergens: Mango

tazopassionteaingredients

Since my daughter has oat and sesame allergies (aside from the more “mainstream” peanut and tree nut) and used to have corn and grape on her allergen list I keep meaning to organize some thoughts about the more uncommon allergens. Granted, oats benefit from the issue of gluten or wheat cross contamination but the rise of the “gluten free oat” has muddied the labeling waters for us.

A dear friend wrestles with a mango allergy and since mango is in the same family as the cashew (source), I have learned a lot from her struggles with this pesky ingredient not only in food but in beauty products.

Disclaimer: I am not a doctor, just a curious food allergy mom so please if you suspect you have an allergy to mango, do see an allergist about your concerns.  I thought people searching for information about mango allergies would find the links I’ve included courtesy of my friend useful.

In South America, for example, mango is readily available and consumed so it makes it onto lists of prevalent allergens (source).  When you search for information about mango allergies, oral allergy syndrome is one that comes up, with some people recommending to those with poison ivy issues that the fruit can still be consumed if it is peeled in a particular way (source).

In “Hypersensitivity manifestations to the fruit mango” from 2011, cross reactivity with other allergens may account for first reactions to mango where there is no prior reaction.  Latex allergic individuals have been reported to in some cases experience a mango allergy.   Also in the same article the geographic distribution of reactions seems to follow areas where consumption of mango is more prevalent, which makes the fact that it is appearing as an ingredient more often here in the United States of note.

Spotted at Trader Joe's - Mango in Cheese

Spotted at Trader Joe’s – Mango in Cheese

In beauty products, mango can carry the name “mangifera indica” or “garcina mangostana.”  Translations of mango are included on the “encyclopedia of life” website.  I have seen mango in everything from lip gloss to hair color and even in a balm that is marketed for relief in the early days of nursing a newborn.  Anything tropically themed may contain mango, such as Tazo’s Passion Tea or other drinks.  We have put together a panel about skin products for the 2014 Food Allergy Bloggers Conference (“Skin Deep – How Allergens Affect Your Skin’s Health“) and I’m very keen to learn more in September.  You can search for mango in the cosmetics database to see how it is popping up everywhere.

When a person’s allergen is not in the “top 8″ here in the United States they face an uphill battle.  The connection between mango and tree nuts does make me wary but you also don’t want to go down the rabbit hole of finding out what is cross reactive with a given allergen and then avoid that item as well.  Supervised food challenges are the gold standard in allergy testing so stay safe.

I’ll end with a neat story from my friend, she is a teacher and one day at school they served mango in the cafeteria.  Her students later told her they’d taken turns washing their faces and hands before returning to the classroom.  It made me so happy to hear how considerate they had been!

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There are only a few more days to register your support of my friend Libby’s petition regarding ingredient disclosure in prescription medications.  Even if you feel the request is a broad one, a petition like this is meant to start the conversation, not end it, so I encourage you to check it out.

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Updated 7/8/14 to add this great link about cross reactivity on the Kids With Food Allergies page.

Vegan Slow Cooker Potato Leek Soup

IMG_20140619_113435368

Thank you to Sarah Norris of Gluten Free Dairy Free Walt Disney World for pointing me to this recipe – I had purchased Yukon gold potatoes and trimmed leeks at Trader Joe’s because the idea of soup when it is 100 degrees out is oddly appealing.  I adjusted it to be more calorie friendly and thought I’d share my version here.  First, let me direct you to the inspiration, Gluten-Free Goddess’ 2009 recipe.  Her post has wonderful pictures (with leeks for a garnish) and suggestions for a stove top method as well.  Also check out our Food Allergy Bloggers Conference post featuring Sarah, it was great to meet her last year!

IMG_20140619_112619463

Ingredients

1 cup rice milk

4 cups vegetable broth

2 leeks, trimmed and sliced (I used a 6oz pre-trimmed pack from Trader Joe’s)

680g Yukon gold potatoes, washed and quartered (I leave the skins on)

1 tsp dried tarragon

1 tsp dried dill weed

1 tsp granulated garlic

Salt and Pepper to taste (depends on how much salt is in the broth you use)

1 tsp extra virgin olive oil

Supplies

Slow cooker or crock pot

Cutting board, knife

Teaspoon measurement

Immersion blender

IMG_20140619_113435368

Directions

Start your crock pot on high, set it for 5 1/2 hours.  add the oil if desired and then the chopped leeks.  No need to worry about large rounds when you are chopping the leek, you will be blending this recipe up!  Add your quartered potatoes and then the 4 cups of vegetable broth.  You’ll see the ingredients are just about covered.  We don’t want the soup to be watery so trust me on this.  Cook on high and when when the 5 hours of cooking time has elapsed (I set it for a little longer so I have time to chop and prep while it heats up) you’re going to blend the soup in the crock pot with your hand immersion blender.  At this point add the 1 cup of rice milk, adjust your salt and pepper to taste, heat until warm throughout (shouldn’t take long) and you’re ready to serve.  Great with a salad.

Calorie and Nutritional Information

potatoleeksoup

 

The batch I made came to 1,763 grams and we like to do 100 gram servings in MyFitnessPal so it was 47 calories per 100 grams.  I didn’t list the spices and herbs in the recipe so that may have added a trivial amount of calories.  I’ve managed to put all my lost weight back on in the last year but I am still trying to fight my way back.  Here’s hoping!

Ingredient Disclosures for Prescription Medications (or: A Worthy Cause)

"Let Food be thy medicine and medicine be thy food."
"Let Food be thy medicine and medicine be thy food."

My heart sank when I read a message from my friend Libby that she had discovered that the drug information insert given to her by CVS pharmacy with her food allergic son’s medication was for the brand name drug and not the generic she was being given.  She had made a startling discovery after months and months of anguish and worry for her son’s declining health: the generic version of the drug contained a milk derivative.  The brand name did not.  She had been giving her son a medication that contained an ingredient directly contraindicated by his allergies.  Libby wrote more on her blog, The Allergic Kid.

Think about it this way, if pharmacies are supposed to look at the interplay between one medication you take and another, shouldn’t they also (1) provide accurate ingredient information, (2) consider the act of avoiding an allergen a prescription equal to something actually produced by a company and shipped to the pharmacy, and (3) have to engage in safe practices so that a person obtaining a medication won’t have their pills sorted on the same surface as a medication that would be unsafe for them to ingest?

Like any mama bear would, Libby has sprung into action and I want to help her reach as many people as possible.  If her petition to the White House (remember, President Obama is directly impacted by food allergies in his family) gains enough signatures by July 4, 2014, we can get an official response to her request that FALCPA be updated to include direction that prescription drugs, like the food on our store shelves, take food allergies into account.  This benefits the food allergy community, the celiac community, and the public at large that is owed transparency.

Will you join me in signing this petition?  Thank you!

Update: I am pasting this wonderful comment here so it isn’t missed.  Reader Tiffany writes:

I am a registered pharmacist. Actually I have a Doctorate of Pharmacy–PharmD. I am also the sister of a person within milk protein allergies and the mother of a son with severe food allergies–egg, soy, peanuts, and various tree nuts.

Pharmacists, in general, get no formal training when it comes to food allergies. I must train the technicians at each pharmacy to ask for food allergies in addition to medication allergies. A lot of food allergies can be placed into the pharmacy’s database. However I cannot guarantee that the inactive ingredients are tagged and appropriately flagged—that’s a whole other discussion LOL . Brand and generic medications do not, by law, have to contain the same inactive ingredients. Generic medications are only required by the FDA to show that they compare to the active chemical in terms of efficacy/safety.

I will say that there are numerous medications that contain potential food allergens such as soy, fish, milk, and wheat gluten. For example: Gel caps –soy oil, over the counter vitamins–especially children’s–soy, spectracef (antibiotic) contains milk protein, Androgel–soy, certain vaccines such as flu, MMR–egg, certain diabetes medication–fish/shellfish. I could go on…

Combivent just re formulated this year and no longer contains soy/peanut allergens–hurray!

My top three suggestions would be :

1. Please tell the pharmacist–and stress the importance and severity of the allergy. Make sure that the food allergy is placed into the profile either in the allergy section OR via a patient note. Heck, why not both! As I stated above, pharmacists are somewhat like the general population in terms of food allergy knowledge and most do not even realize that this could be as big an issue as it is. A pharmacist will/should know the difference between lactose intolerance and milk protein allergy. So by discussing the issues–the pharmacist should “get it.” But if the pharmacist/pharmacy staff was never informed then they can’t intervene.

By the way, the doctors are just as clueless. Should you make the doctor aware of food allergies? Yes. Does the doctor weigh this info when prescribing? Probably not.

In my opinion, standard allergy questioning for medical purposes should contain food allergy questions as well.

2. Ask for the package insert (PI) for the NDC THAT YOU ARE RECEIVING. The actual medication that is in your bottle. The NDC is the number that signifies the specific manufacturer, drug, and bottle size from which your prescription was filled. The inactive ingredients are listed there usually. Each bottle comes with a PI–some may have fallen off during shipping. Every pharmacist will know what an NDC is.

As a matter of fact, in most retail settings the pharmacist can order a specific NDC–one that does not contain a specific FA–provided that the product exists and is available. Be patient–it is going to take more than 15 min to track all this information down. It’s worth the wait.

3. Call the manufacturer if unsure. The pharmacist has access to and can provide you with the phone number for the manufacturer of the medication you are receiving.

I have discussed these issues on small scale and I totally agree that medical staff including doctors and pharmacists need better FA knowledge and training as it related to medications and treatment.

Sorry I wrote a book but I hope that will help answer some questions about FA and the pharmacy (FA and the pharmacy that sounds like a good title for a blog—hmmmm LOL)

I think she should certainly start that blog!  Thank you Tiffany for sharing your expertise!

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Update: 7/8/14

The petition didn’t gain enough signatures (when I checked last before it went offline I believe it was at about 200) but that doesn’t mean the issue should go quietly into the night.  In other news, Tiffany did get her blog started!

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

Image Generated Using www.keepcalm-o-matic.co.uk
Image Generated Using www.keepcalm-o-matic.co.uk

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.

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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!   

Coming Home (Film Review – Helsinki-Tehran, written and directed by Azar Saiyar)

Aliakbar Saiar
Aliakbar Saiar

When we were kids we would wait impatiently for my mom to come home from a night’s work in the morning.  Naturally, we swarmed her.

“Let me come home,” she would say, kicking off her clogs and removing her badge.

I always thought she meant she needed to take a shower to get the hospital smell off of her, which was probably part of it, and then years later I thought she meant she had just walked in so accosting her on the threshold wasn’t ideal.

My sister in law once told me she values her drive home from work.  If she was able to teach near her home she would miss it, the chance to unpack her thoughts from the day, to be silent after teaching elementary school children all day.  To switch from her teacher self to her self-self (my words, not hers, I promise she is much more erudite).

Mom has a “hospital voice” and I think I have a “work voice” too.  And a “court voice.”  And the voice when no one is listening.

I think I like that last one best.

When you’re always at work, there is no coming home in the classic drive home sense but instead I have moments, glimmers, of coming home and they happen randomly.  Sometimes it is late at night when I finally flick off the light in my home office/laundry room.  Sometimes it is the sound of my husband’s key in the door signalling that I can come home too.

And sometimes a song or a book or a film brings me home.

My cousin, Azar Saiyar, is a filmmaker.  She looks at things through her artistic lens and I think to myself the patience to view the world in vignettes is a gift.  Knowing she is a filmmaker but never having sought out her work (I don’t know why), I stumbled upon a film she wrote and directed featuring her father, my uncle, Aliakbar Saiyar.

Helsinki-Tehran from Azar Saiyar on Vimeo.

My Uncle Ali died about 4 years ago.  I remember getting the news and rushing to the carpet in our home that he had sent to my father, who gave it to me years later for my 18th birthday.  I touched the tassels, remembering how he would sit in our house and braid them absentmindedly on a visit, breaking only to gesture with his hands as he spoke animatedly to my father in Azari.

I moved my fingertips over the carpet and really felt the sensation of the silk beneath my fingers. My ears roared in that way they do when you have to feel something physical and not just emotionally because of the weight of it.  Thinking about how experience and memory can tie us together but here was something tangible that I could do to act as its own remembrance.

Azar made a film featuring my uncle that I watched this morning but it was made in 2009.  It is about being home, wanting to go home, perhaps taking our home with us through stories and dreams and memories.  It is the story of every immigrant who listens to the music of their childhood, who shares their stories with their children and grandchildren.

Watching it made me feel like coming home.

To know as the postscript to my Uncle Ali’s dreams of going to visit Iran again from Finland that he died there unexpectedly on a visit there is all the more heartbreaking.  Azar’s short film is beautiful and lyrical. I appreciate it so much as a parent, as a niece, and as someone that wonders about her own place in the world.

Food Find: Pascha Chocolate

Beautiful packaging
Beautiful packaging

I came home recently to find a box marked “perishable” on my doorstep and whisked it inside.  Those of you in Southern Nevada will know that the shipping window for perishables here is very limited and has already passed for 2014 (that is, until November or so rolls around).  I was so surprised to find I was the lucky recipient of some unsolicited chocolate!

In early 2013 I had read on my friend Colette’s blog Learning to Eat Allergy Free that there was a new allergy friendly chocolate and it was fair trade to boot.  I did not find Pascha Chocolate in stores at that point but was the lucky winner of a giveaway hosted by Alisa Fleming of Go Dairy Free at the end of last year and I loved what I received.  I wonder if I got into the system as someone that will gladly consume large quantities of chocolate and when I received the box this past week and realized I never had the chance to write about my take on Pascha Chocolate.  It was time to remedy that (see also: Disclosures).

Chocolate with Maca

Chocolate with a new to me ingredient: Maca

 

By the way, both Alisa and Colette are taking part in a new spin on ice breaking at this year’s FABlogCon – we are having a morning roundup of Saturday “breakout sessions” that will be limited mostly to groups of 10-15 per topic where you can really get some one on one insight from some brilliant folks.  Colette will be offering information on using that fancy DSLR you are scared to switch into manual mode and Alisa is going to be covering monetization across blogging, writing, and magazine platforms.  You’ll be able to register for the breakout sessions soon, I am having a hard time deciding which one I want to sit in on so I may claim planner’s privilege and hop in and out of sessions to “see how things are going.”

Beautiful packaging

Beautiful packaging

Ahem.  So, what did I receive?  Twitter recap to the rescue because most of it is already gone four days later. . .

I even found myself enjoying the coffee variety and I don’t drink or like the aftertaste of actual coffee.  The coffee flavor makes me think of my mom.  She works nightshifts as a registered nurse (labor and delivery) and has done it for many years so coffee is her mainstay.  There’s something comforting about the aroma of coffee and chocolate that says “mom” to me.  I wonder if my kids are going to smell frying onions in olive oil as adults and think of me?

The 100% cacao chocolate chips are a wonderful addition and the chips will be coming out later this year.  I am so glad to have a 100% alternative to Baker’s chocolate (which is not totally safe for milk allergic families given the “may contain” warnings on the packaging) for baking and cooking).  I tried the 100% chips in my vegan chocolate chili recipe (a lot like this recipe, just with chocolate and agave in the mix) yesterday and it was nice to not have to chop chocolate since the chips melted in perfectly.

Pasca Chocolate Chips

Chocolate Chips Coming Soon

My favorite of the bars was the 60% with Maca variety and I have to say I like the infused flavors much more than the varieties I’ve tried in the past with Goldenberries or Cacao Nibs (two of the types I received from Alisa’s giveaway, which were very good as well).

The children are not fans of darker chocolates, especially E, but I love seeing allergy friendly chocolate diversifying.  Even Pascha Chocolates suggests their 55% bars for the younger set and R did like the 60%.  These options are vegan, peanut free, tree nut free, and more with a great texture and taste.  Hope to start seeing these in stores locally, be sure to comment if you’ve seen them out and about so I can track some down.  Highly recommended.

Mylan Summit 2014 (and My Trip to Washington, D.C.!)

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I’ve created a new Disclosures page to cover in greater detail what Mylan Specialty covered for the trip I’m about to discuss as well as other benefits I’ve received related to this blog.  Their provided disclosure is as follows but I didn’t think it covered everything a reader might ask about so feel free to scroll to the bottom of the disclosures page for more detail (though there is a spoiler in there about the DC leg of my trip that I covered myself):

I disclose in any communication made by me about EpiPen® (epinephrine) Auto-Injector and/or the Mylan Specialty Blogger Summit that such communication is at my own discretion and based on my own opinion.  I also disclose that my travel expenses were compensated by Mylan Specialty in exchange for evaluation and feedback on information presented during the meeting.

It is odd to say on the one hand my opinions are my own (they are) but in reality I do think I left the summit with a more favorable opinion of Mylan Specialty than before.  I don’t think it was because I had my travel covered as much as the act of traveling there and meeting with people passionate about food allergy awareness and advocacy in conjunction with their product (the “EpiPen”) did impact me.  I can see now why Jenny‘s story of starting the Food Allergy Bloggers Conference began with her experience gathering with other bloggers at a prior incarnation of the summit.  When she approached me about helping her bring the conference to life, she even said that she wanted the experience of connection and education to be available to not just the invited few but a broader audience.

It was such a boost to visit with some wonderful advocates on April 10th and 11th.  They say much of business is conducted before or after actual business hours in the form of relationship building but like true multi-tasking food allergy moms we made every minute together count.  Studious notes were taken, suggestions were made, and there were more than a few laughs thrown in for good measure.

So!  My husband points out to me that there’s the regular, concise way of saying things and then there is the “Homa” way.  I’m going to go with the latter though never fear, I won’t be pasting my type-written notes from the summit for readers to get through.  Thank heavens for small favors, right?  I won’t overload any of my e-mail subscribers with this full post because it is l-o-n-g so here’s the debut of my first ever “read more” tag on the blog, something I really can’t stand on other sites but I’m hoping you will click through and I promise it isn’t a pageview grab or anything.

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