Orange County - Food Allergies Support Group

Meetings: : Third Tuesday, Every Odd Numbered Month

  Contact: : [email protected]

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Managing Your Child’s Food Allergy’s at School: Q&A with Lisa Musician, RD, LDN

book_parenting_a_positive_reaction_sm-1What motivated you to write this book?

I was motivated to write the book personally because I experienced firsthand what it was like to send a child off to school with food allergies, not just one child but two. As I continued to counsel more parents sending their children to school with food allergies and hearing the same questions, I felt it was necessary to reach out and help inspire parents to become confident about their ability to promote safe for their food allergy children and creating a sense of normalcy. I share my personal experiences throughout the book as well as my professional knowledge.

What advice do you have for a parent who has a child that is newly diagnosed with a food allergy?

I let the parent(s) know that they are not alone and there is a wealth of information on food allergies that I will help them navigate the process of learning how to keep their child safe while maintaining optimal health and keeping peace of mind. I share my personal experience which helps to ease their mind in knowing that they are working with someone who “gets it”.

Why is an Allergy Action Plan important for a child to have on file in school?

An emergency treatment or care plan (also known as a Food Allergy Action Plan or Allergy Action Plan) is a written plan of instructions based on recommendations from the child’s healthcare provider (allergist or physician managing the food allergies) that clearly states what to do if an allergic reaction happens. It’s an effective tool for communicating the necessary steps to respond appropriately to a potentially life-threatening food allergy reaction. There’s no guess work if a reaction happens, the plan spells out exactly what to do. The plan should include: basic information (name, address, contact number of parents, age, height & weight of student, date of birth, grade and teacher’s name along with emergency contact numbers listed in order of importance to be called; type of action to be taken in an emergency which would include: instructions on how and when to administer medications, list of medications, including dosage and route (oral, injection, etc.); and a list of signs and symptoms of an allergic reaction.

What is a common mistake you often see with food allergy management?

The most common mistake with food allergy management is poor recognition of allergic symptoms and subsequent failure to treat immediately with epinephrine. Delaying treatment is life threatening. When there is a question of whether or not to give epinephrine, it is best to err on the side of administering. If medication is not given within a certain amount of time after the onset of anaphylaxis, the probabilities of survival are decreased dramatically.

How can parents best partner with a school to insure their child’s food allergies are managed safely and successfully?

This is exactly why I wrote my book. To help parents partner with the school to insure their child’s food allergies are managed safely and successfully by learning how to effectively communicate by asking the questions necessary to keep their child safe. For instance, parents are encouraged to ask under what circumstances food would be in the classroom and how often. Also, ask what the snack policy is for the classroom. These are just some of the questions found in my book. Education, communication and preparation are the essential keys in managing food allergies at school. It’s a team approach between the parents, school and child.

How can we best support families with food allergies?

Some simple tips to help support families with food allergies at school and outside of school is to offer non-food items instead of food, encourage non-food activities like playing a game or taking a walk as a way of spending time together. Simply asking what you can do to help can make all the difference to the food-allergic child and his or her parents.

Any other takeaways?

Keeping food-allergic children safe at school with food allergies is manageable. Parents are the greatest supporters and advocates. It’s important to understand and believe that having a food allergy is only one part of a child’s life. A healthy outlook is to focus on the positives and possibilities life has to offer. Promoting safe care while creating a sense of normalcy at school is possible. I would encourage anyone sending a child to school with food allergies to read my book, Parenting a Positive Reaction.

Lisa’s book can be found on Amazon.com in paperback.

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11/15/2016 – Special Food Allergy Event – Linda Coss Speaker

I do not normally make a big deal about Food Allergy Meetings but we are very fortunate to have Linda Coss come and speak at our Food Allergy Group tonight.  You will not want to miss this opportunity.

Linda Coss has been a pioneer in the food allergy world, a speaker at the 2016 Food Allergy Bloggers Conference in November and is the author of four books:  75 Marketing Tips to Grow Your Business; How to Manage Your Child’s Life-threatening Food Allergies: Practical Tips for Everyday Life; What’s to Eat? The Milk-Free, Egg-Free, Nut-Free Food Allergy Cookbook; and What Else is to Eat? The Dairy-, Egg- and Nut-Free Food Allergy Cookbook.

Linda will be speaking on the topic of “Raising a Child Who Takes Life-Threatening Food Allergies in Stride”

As parents, we’re all striving to raise happy, well-adjusted children. Most parents will tell you that trying to achieve this goal can be a real challenge. And that’s without overlaying the challenges that we face as parents of children with life-threatening food allergies!

In this 20- to 25-minute talk, nationally-known food allergy author Linda Coss discusses how to handle daily food allergy management in such a way that your child grows up feeling completely comfortable with the reality of his or her allergies, accepts the situation without serious emotional trauma, and turns out “well-adjusted” in spite of it all. It’s a 10-step approach, and it all starts with the recognition that you, as the parent, set the tone and teach by example.

Linda will be available to answer questions and join in our food allergy discussion.  As always, new people are always welcome and we cannot provide any child care  Our meeting will begin at 6:30 PM in the Ministry Office 2 building.

To find the Church Office please visit the website:  http://www.ocfoodallergy.com/when-we-meet/

For detailed directions from Google Maps, please visit here:  https://goo.gl/Wvr27z

 

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Costco let me down…but only for 2 weeks

It is interesting when you have kids with food allergies because you come to realize that your semi-controllable ritual is what you rely on most in your day.  You live your life like a scientist in that you want things that “work” and do not cause “allergic reactions” to become the norm.  You want things to remain the same from day to day.  Take something as simple as Almond Milk.  For those of us with kids with food allergies to milk (and not almonds), the Blue Diamond Almond Breeze Unsweetened Vanilla almond milk has been a staple in our home for almost 8 years now.  After trying a number of different “non-milk” alternatives, our family settled on the almond milk product.  And honestly, so did I.

It is actually a great milk substitute for a number of reasons but one of the biggest ones is that it has 0 grams of sugar.  This is a big one because if you are required to substitute one product (low-fat milk) for another (almond milk), your hope is that you would have a healthier solution than your initial choice.  And for our family, it was definitely that.

Now fast forward to the beginning of September 2016.  On a typical Sunday afternoon Costco run, as we are checking off our Costco list of essentials for the week, we head down the aisle that would normally carry the Almond Breeze almond milk.  After searching a bit and then re-checking the end-caps to see if it had moved, it was no where to be found.  They were out….or so I thought.

After we checked out, I went over to speak with one of the managers at a terminal and I was shocked to learn that they were not carrying the brand any more.  WHAT?  HOW COULD THIS BE?  After all these years….no more.  Being the persistent person that I am, the next day I reached out to Blue Diamond and sent an email.  Additionally I sent an email to Costco.  And then, I received back the bad news I was hoping to not receive.

Thank you for contacting Blue Diamond Growers. We appreciate your feedback and sorry that Almond Breeze is no longer at your Costco. Unfortunately this was a decision made by Costco. We will certainly pass along your comments to our Marketing and Sales team that work directly with Costco. You can also help us by going to the Members desk and requesting the Store Manager to please bring back Almond Breeze. Meanwhile I can send you some money saving coupons for your efforts and dedication to Almond Breeze.

ARGGG!  This is a bad dream.  Does this mean that as a food allergy parent I am actually going to have to shop at Whole Foods (sorry…..but no offense) to buy another “specialty” item that is going to add another large expense to my monthly bill.  In an act of desperation, I did notice that there was another “almond milk” product that Costco was carrying….but after bringing it home, my wife quickly pointed out the fact that it was “non-vanilla” and contained “a ton” of sugar.  This would have to go back.

Now fast forward to today.  After a last minute Costco run this evening, and after checking out, I decided to speak with a manager again about the almond milk situation.  My plan was simple.  If I could find a location that had the product, I would just drive there and buy several hundred dollars worth of almond milk.  Why not?  It has a huge shelf life (usually more than 1 year) and if it meant that I was going to save a lot of money then I would be completely justified in my decision (even though I would most likely hear a long speech from my wife on my insane decision).

The manager types at his computer a moment to tell me what I already knew.  The Blue Diamond brand was no more…but then he said something interesting.  He said that there was an “alternative” Kirkland product.  Huh?  What did that mean?  So, I politely asked if he could show me what he was referring to and guess what.  There it was.   In a NEW BOX.  A NEW product I have not seen before.  A KIRKLAND REPLACEMENT for the Blue Diamond Product.

And now….Thank You Costco.  You have just launched “Organic Unsweetened Non-Dairy Vanilla Almond Milk).  When you look at the packaging it is clear that it is being marketed for the Smoothie market….but that does not matter to me.  It is the same package….at the same price.  Thank you Costco.  Thank you Costco.  Thank you Costco.

As you can see by the photos, the product seems to be identical.  Next time you are at Costco, if you have been searching high and low for the almond milk, the love for Costco has returned.

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Time for a New Name for Food Allergies

I had an interesting conversation with my wife the other day on the topic of Food Allergies.  It is interesting because every parent that engages in the daily battle of managing food allergies for their child is an amazing Hero in my opinion.  These are the parents that wake up every day and help their kids manage the not-so-wonderful world of food allergies.  And let me also make it clear that this article is not meant to discount or discourage those families with suffer from Celiac Disease, EOE, Gluten-Free or other food-type disorders.  We are talking about life-threatening food allergies.  For us parents battling the Food Allergy war, we can clearly understand the daily battles that ensue with your children and the difficult choices that have to be made daily as your kids choose was to eat several times throughout the day.  It is an emotional battle that occurs every day.

But one of the biggest gripes I have with Food Allergies is the issue with the name itself….Food Allergy and here is the basic problem.  The name itself does not properly communicate the incredible risk of life that is involved with every meal.  How many times as a parent have you heard the words “I also get an upset stomach after drinking milk” after you have explained to the stranger at the food counter that your child has a food allergy.  As a parent, I would love to have the issues of Diarrhea, Indigestion, Nausea or Vomiting.  I would absolutely welcome any of these side effects over the fear of immediately stop-breathing symptom.  Having different symptoms would be like a SPRING DAY filled with butterflies, deer, bacon and harps playing music in the background (okay, maybe the harps would be replaced with a Ukulele)….but you get the idea.  It would be amazing.

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But no.  When your child has a life-threatening food allergy (and in the cases of most of the people that get to visit our support groups we are talking multiple life-threatening food allergies), this is not the case.  It can lead to DEATH without intervention.  It can happen QUICKLY.  It can happen without major visual symptoms.  Close your eyes for a moment and imagine yourself at one of your favorite restaurants looking through the menu.  As you scan through the items of that menu, most of the items have a little icon next to them with the words “Eating this will lead to DEATH”.  What would that be like?  Would you still want to eat there?  Would you trust the food that arrives on your plate?  Now imagine that it is not you but your child.  Walk through the above questions again and that is what these parents go through multiple times per day:  at the grocery store, at coffee shop, at home, at Grandmas, at School. etc. etc. etc.

Welcome to the very-difficult-world of what it is like for a parent of a kid with food allergies.  This is the daily routine that they face during every meal, through every day, with their children.  What if you have two children with food allergies (like many of us do)….then the very-difficult-world is multiplied exponentially.  It is the simple process of eliminating foods from their kid’s diets that will lead to death.  It is a tremendous burden and a thankless job.  It is a job that is done every day by thousands of parents (mainly moms and caregivers) each and every day.  But as we go through this minefield, we must constantly remind those around us at what is at stake for our children.  This is serious business with serious consequences.

It was interesting because I was listening to some of the recent horrific news about some of the recent attacks in France.  Absolutely terrible and our prayers go out to those families impacted.  As I listened, there was a story of one of the FBI officials talking about it and how they prepare for presidential speeches and events.  Simply said, the FBI needs to get things right 100% of the time.  There can be no mistakes.  This resonated with me that the same thing happens 50 times a day by every parent with a kid with food allergy.  They can never be wrong….ever.  Not even once.

So this leads me back to my original conversation with my wife on the topic of Food Allergies.  We need to come up with something better for this disease.  If it was called “INSTANT DEATH DISEASE FROM FOOD” or “MY KID WILL STOP BREATHING IF I EAT THAT DISEASE” or anything that instantly communicates the extreme importance of it then I would be complete favor of that.  Think about how much easier the conversations at school would be with those parents that insist that it is their right to bring a PB&J sandwich into the classroom.  The uncomfortable conversations at family gatherings where some relative insists on putting out the bowl of life-ending nuts on the table for everyone (but your child) to enjoy.  It the label for “Food Allergy” was just somehow different and could immediately described the emotion and the importance of the subject.

So if you are a parent without a kid with food allergy and you hear those words Food Allergy, please remember what is at stake for these parents.  It is not fatigue or indigestion that is at stake.  It is a child’s life that can be taken very quickly with the simple ingestion of a harmless looking cookie.

For now, I would continue to refer to Food Allergy as “A Life Threatening Food Allergy” until someone comes up with a better name.

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March 2016 Support Group Meeting

If you are a parent of a child with food allergies, we invite you to our March 2016 food allergy support group meeting.  Designed for parents with kids with food allergies, our meetings (that meet every other month), help support parents with a wide range of food allergy topics.  The goal of the meeting is to provide a safe place where parents can share their concerns with other parents that can understand their food allergy situation.

According to FARE, researchers estimate that nearly 15 million Americans have food allergies and that nearly 1 in every 13 children.  This means that with roughly two children in every classroom, food allergies affect many families in Orange County.  Our goal is to provide a safe place to address this need.

In addition to speaking on Food Allergies, our group this month will continue the discussion of Oral Immunotherapy (OIT), which is a very popular topic.  Many of the families that attend our support group have first hand knowledge on some of the OIT programs that available and are more than happy to answer any questions that you may have.

We hope that if you have a child with food allergies that you will decide to visit us Tuesday, March 16, 2016 at 6:30 PM.  Our meeting will be at Saddleback Church in the Ministry Office 2 building.  For directions, please visit us online at:  http://www.ocfoodallergy.com/when-we-meet/

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Dr Randhawa and OIT Treatments

Food allergy is an abnormal reaction of the immune system that occurs soon after eating specific foods. The immune system overacts to the proteins found in that food. Even a very tiny amount of the allergic food can trigger digestive problems, hives and swollen airways. In some cases, these reactions can be so severe that they cause life-threatening anaphylaxis.

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2015 FARE National Food Allergy Conference – Save the Date

May 16-17, 2015

The FARE National Food Allergy Conference will be held May 16-17, 2015 at the Hyatt Regency Long Beach in Long Beach, CA, gathering the country’s leading food allergy experts and members of the food allergy community together for a weekend of world-class programming. The conference provides a unique opportunity for individuals and families managing food allergies, caregivers, school staff, health care professionals and others interested in the field to gather as a community and learn about advances in food allergy research and advocacy, best practices and practical skills for living well with food allergies, and much more. Individuals 11 years and older are invited to join. Both full conference and single-day registrations will be available.

For more information, please visit:  http://www.foodallergy.org/CONFERENCE

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Great Orange County Ice Cream Option for Kids with Food Allergies

So the family decided to check out Sub Zero Ice Cream and Yogart in Laguna Niguel, CA this evening.  Our oldest has a life threatening food allergy to milk, so our typical options when going out for after dinner treats usually involve those in the sorbet variety.  But tonight was different.

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The good news is that this place really paid special attention to our food allergy.  Additionally, they use Almond Milk in many of their options.   Additionally, this is nice if you are concerned about calories and trying to make healthier choices.

Sub Zero is a great option for those who have food allergies.  In fact one of their posters even mention the wood “food allergies” in the print….nice.  Additionally, it is fun.  Basically after your ingredients are selected, the real fun begins.  -321 degrees of pure Nitrogen turning your bowl into custom ice cream before your eyes.

The only Orange County location is in Laguna Niguel, about 2 miles off the 5 freeway at the Oso exit.

SubZero Ice Cream and Yogart
27281 La Paz Road, Ste Q
Laguna Niguel, CA 92677

Check it out for yourself: http://www.subzeroicecream.com/store-locator-2/

 

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Allergy Cards Help Spread Word About Children’s Health Risks

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Recently a great article appeared in the Wall Street Journal on Allergy Cards for birthdays, events, coaches, etc.  It is a quick way to spread the word about a food allergy, while giving all of the relevant and essential contact information for your child.

I can definitely see the benefit to having these in your wallet, a purse, a car or briefcase.  Having these can quickly tell the story about your child’s food allergies as well as the response that should be taken in the event of an exposure to an unwanted allergen.

Allergy cards are increasingly popping up on back-to-school shopping lists as parents seek a more efficient and thorough way to inform a new batch of teachers, coaches, sitters and friends about their children’s allergies.

The handout, usually the size of a business card, details a child’s allergies and includes instructions on how to handle a reaction, sometimes with a reminder to dial 911 before the parents’ phone numbers, which usually are also listed.

Here is a link to the full article:  http://online.wsj.com/article/SB10001424052970203523204580113782034925648.html

Here is a link to several sites to check out for cards:

 

 

 

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