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

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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.)
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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

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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

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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!

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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

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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!

EpiPen and Auvi-Q Expiration Date Frustrations

When we re-fill epinephrine auto-injector prescriptions it feels a little like checking a scratch card – what will the expiration date be?  I think many of you are in the same situation.

Auv-Q Purchased 5/12/14 with 1/2015 Expiration Date

Auvi-Q Purchased 5/12/14 at Target Pharmacy with 1/2015 Expiration Date

This is not a new issue, I mentioned it in my post about the most recent Legislative Healthcare Committee Meeting and in my Mylan Summit post, but as I type this is I have just returned from paying $233.86 (after the $100 copay card, Mylan has one as well) for an Auvi-Q epinephrine auto-injector set  of two that expires January 2015.  The last Auvi-Q I obtained had an expiration date fourteen months out from the date of purchase and this one is 8 months.  So I know it is possible to be 12-14 months out on an auto-injector.  Anything less than a year is a problem considering the costs for families alone and that the high cost may cause families to stop filling their prescriptions.

Our Voices are Louder Together

I am fortunate that I can pay the cost of the medication (our insurance does not cover or alleviate prescription drug costs) but that does not mean it is ideal.  I specifically requested that they order the Auvi-Q last week in hopes of getting a newer one but it was not enough.  I would love to gather your experiences and submit them to both Mylan and Sanofi as there has to be a better option in all of this. 

When I saw the Auvi-Q expiration date I asked to see an EpiPen one and it was February of 2015 to the Auvi-Q’s January 2015.  I stuck with the Auvi-Q because the voice guidance puts my daughter’s teacher at ease and because the expiration date was not that much better (February 2015).  Still a significant amount of time less than the 12 months we all aim for.  After, I called Jenny and vented and she suggested that I should have left the medicine there and called around town to find a better expiration date but we’re already 12 days into May and my daughter’s injector expired April 2014.  So here I am, hoping that when the time comes in January to obtain a refill that there will have been true changes in the system so that other families as well as ours are not in the same boat.  Also feeling grateful that I have people I can call and know they will share my frustration about things like this.

Anecdotal reports include hearing that pharmacies in town offering a discount on injectors that expire sooner (like 50% off on one that is six months out) but I don’t know which pharmacy that would be.  We only buy one set every time we need a refill because of the cost and because my daughter self carries.  I carry an expired set in my purse just because something is better than nothing as a backup.

Let’s Discuss…

At any rate, please let me know either at my email homa at woodrumlaw dot com or here in the comments about your experiences and I would like to put together a letter to both Mylan and Sanofi asking about our options.  I have a feeling that the issue is on the pharmacy side of things because reps from Mylan and Sanofi have mentioned that the dates should be at least a year out.  I am not placing blame as much as feeling baffled that if companies are telling me all pharmacies have to do is exchange older injectors for newer ones, why are they not doing it?  Why discount them or force them on consumers that aren’t going to risk not having them in the event of an allergic emergency.

Thank you in advance for your input on this one, I will keep you posted.

Disclosure: I attended Mylan’s Summit last month but my opinions are my own – more detailed disclosure here and here.  Sanofi and Mylan have both been sponsors of the Food Allergy Bloggers Conference, of which I am a co-owner.  My opinions, as always, are my own and are not representative of my position at Food Allergy Bloggers Conference LLC or the real or perceived benefits from either company.