Tuesday 22 March 2016

Interview: Sloane Miller, Living Well with Food Allergies


Interview with Sloane Miller, MFA, MSW, LMSWPsychotherapistSpecialist in Food Allergy Management

   
Photo by David Hanschuh  © copyright, and reprinted with permission of Sloane Miller, and David Hanschuh 

Sloane, you are wonderful advocate, and inspiration for the food allergic community, and show that it is possible to “live well” with food allergies.  Living with food allergies can be stressful for children, teens, adults and food allergy parents alike. One of the most overlooked things about living with serious food allergies is the anxiety that comes with living with such a serious condition.  As a food allergy parent, with a child at risk of anaphylaxis, we have seen that anxiety is a really big aspect of the condition that many people with food allergies and those that love them do not understand or even recognise.


One major aspect of anxiety is communicating our needs with family and friends.  Our anxiety levels can be particularly heightened at the early stages of diagnosis. This can be true whether it's a coeliac (celiac) disease diagnosis or severe food allergies. I know certainly this was the case for our family.   

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1. How can we communicate our needs without becoming overwhelmed with stress?  

It can feel very stressful to talk about something as private and as a personal as a medical diagnosis. I talk about this at length in my book AllergicGirl: Adventures in Living Well with Food Allergies (Wiley, 2011) and with my counseling clients all over the world but here are some things to keep in mind:

It’s very important to understand your food allergy diagnosis. If you have any lingering questions, go back to your medical health care provider and get all of your questions answered. Don’t worry, most people leave that first appointment feeling confused, upset and/or flustered and forget to ask even some of the basics. It’s normal. Just go back and get your questions answered.  I have a free download, a list of questions that you should fully understand before leaving the doctor’s office. http://allergicgirl.com/free-guidance/


The reason for understanding your medical diagnosis is multifold but it’s fundamental when it comes to communicating your needs to others. You will need to understand your food allergy diagnosis completely to be able to communicate your needs in a clear, concise and factual manner.

Generally speaking, I suggest using up to three sentences when communicating your needs to anyone, keeping in mind that the underlying message is: my medical needs are real and serious and this is how I need to take care of my needs.

So, for example: “I’m allergic to this ingredient and that ingredient. I cannot consume those ingredients or any foods that came into contact with those ingredients. And I carry emergency medication with me at all times and know how and when to use it.”  A few sentences are all you need to let someone know the basic information about your needs and begin to assess how to move forward safely.  

Do remember:  you have nothing to prove. You do not have to prove your food allergies; all you need to do is communicate your direct needs in any given situation and assess your safety.

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For many cultures food is central for celebrations. And in families often food is equated with love. 

2. How can we navigate staying connected with family?

Food may be “equated” with love but food isn’t actually love. Food is food. Love is love. Food is neither good nor bad. Love is love and can be/is expressed in a multitude of ways.  

Your job will be to separate your feelings out about food and love and help others understand that to love you is either to feed you safely according to your needs or not to feed you and to show love in other non-food ways.

As the holidays are coming up, start this conversation about your needs with loved ones early. If your food requirements cannot be accommodated within a family setting safely, then you cannot eat there. But that doesn’t mean you cannot go. Not only should you go but you must go! Do whatever you need to be able to attend a food-focused family event safely, like bringing your own safe dishes, and connect to your family in non-food ways. Enjoy the non-food based love that family has to offer.

Many children with serious allergies often become fearful of food. But also they often have a higher rate of generalised anxiety compared to other children, and as research has demonstrated are more likely to be targets of bullying.

3. What can we do to help our children deal with anxiety as food allergy parents?

The best first thing you can do is deal with any anxiety you have as a parent about your child’s food allergy diagnosis. If you do not feel on sure footing yourself, you cannot help your child feel secure. The below exercise works with parents and children alike. Please note: these are very broad strokes of an in-depth process that I do within a counseling relationship. The below is only meant to give an idea of where to start looking for answers to quell your concerns, not a substitute for counseling.

Anxiety is based on a series of “what if” thoughts that spiral out of control. The “what ifs” are not necessarily based in reality so it is crucial to ground oneself in the reality and separate out what might be triggering the anxiety spiral.  Here’s one way to begin to learn to separate what is an irrational fear versus a real risk:

Write down all of your fears, anxieties, your concerns and even your worst-case scenarios about any given situation.

Once you’ve written down your list of scary “what ifs”, do your best to take a critical look at your concerns and begin to sort out the rational fears from the irrational ones e.g. this could really medically happen, the doctor told me so, or, those things couldn't happen but I feel nervous about it happening even though I know it’s not real.

Explore your feelings with a trusted loved one: How did you feel looking at your fears critically?  What is different once you wrote down your fears? Did you gain any clarity, if so where? What is still unclear to you? What still is a big unknown or upsetting you?

If any of your fears are medical in nature, and I suspect many of them will be, make an appointment to have a consultation with your medical health provider. Write down their answers or record the conversation with their permission.

Continue to extract for yourself irrational fears from rational and possible risks. Go back to your allergist’s words and recommendation. Ground yourself in the reality of the risk versus your fears around the risk.

It will take a lot of work to keep checking in with yourself about what is real and what is imagined but it is worth it to gain clarity and to calm oneself.

Please note: If you are having overwhelming feelings of anxiety, depression and they are impeding normal life functioning and enjoyment, please see a local mental health provider immediately for an evaluation.


Thank you Kylie for your wonderful questions!
I work with clients around the world and would be happy to offer anyone coming through your site a %10 discount on my regular counseling rate.

Sloane Miller, MFA, MSW, LMSW
Psychotherapist
Specialist in Food Allergy Management
Tel/Cell: 347.541.3133








Sloane Miller, MFA, MSW, LMSW, psychotherapist, specialist in food allergy management and author, is founder and President of Allergic Girl Resources, Inc., a consultancy devoted to food allergy awareness. She consults with private clients, the healthcare, food and hospitality industries, government and not-for-profit advocacy organizations. Ms. Miller earned her Master of Social Work at the New York University’s Silver School of Social Work and her Master of Fine Arts in Writing and Literature at Bennington College. In 2006, she started Please Don't Pass the Nuts, an award-winning blog for and about people affected by food allergies. In 2011, John Wiley & Sons published Ms. Miller's book, Allergic Girl: Adventures in Living Well With Food Allergies, the definitive how-to guide. Ms. Miller combines a lifetime of personal experience and passion with professional expertise to connect with people about how to live safely, effectively, and joyously with food allergies. For more information, please visit Allergic Girl Resources, Inc. on the Internet at www.allergicgirl.com










Copyright © 2011 by the author and reprinted with permission
of John Wiley & Sons, Inc. Picture © Kenneth Chen)

Tuesday 8 March 2016

Is the Easter Bunny allergy Friendly?






It’s that time of year when all the stores are featuring colourful, shiny, glittering displays of chocolate bunnies and Easter eggs, filled with toys or favourite children’s characters. It’s hard to miss. It’s also hard to miss that so many of these treats designed for children contain nuts and other common allergens, like dairy and egg.

One year supermarket shopping with my little man, we ran into a wall of chocolate eggs with toys and treats, and signs of the Easter Bunny. He looked excited, superhero eggs, and some of his favourite characters attached to these chocolate eggs and lollies inside. He was very keen that maybe the Easter Bunny would bring something like this to him.

I reminded him that some of these treats, although they looked great might not be safe and they might not be allergy friendly. The face of disappointment and confusion looked up at me, “Why would the Easter bunny put my allergies and nuts in it? … he knows I have allergies…”

These are the kind of situations that are complex for little people with allergies. Cross contamination isn’t always easy to explain to little people, or big people for that matter.

For anyone who is at risk of anaphylaxis, only a tiny amount can cause a potentially fatal allergic reaction. A contaminated piece of equipment or careless labelling can take a life. This is not exactly how I explained it to my preschooler at the time.


What’s in the label?


A lot of the Easter chocolates - complete with favourite characters or popular toys and marketed towards young children - are not made in Australia. Not all countries have strict regulations that require manufacturers to declare allergens. In Australia the top most common allergens are legally required to be declared on the label – peanuts, tree nuts, dairy, eggs, fish/shellfish, wheat, sesame and soy. There are also some requirements for declaring gluten (see more)Obviously not helpful if you have allergies that are not in the top eight such as mustard seed or coconut for instance.




Other countries such as China and parts of Asia, and many other countries where Easter chocolate treats are often but not always made, for higher profit margins, do not have strict regulations such as we do here in Australia.  

However even with Australian labelling there are problems. Undeclared allergens are reported from time to time. And even 'may contain' warnings can be a problem too. 

Precautionary or warning labels such as “may contain” or “processed on machinery that contains...” in Australia, and most parts of the world are voluntary and are therefore not audited. Unfortunately there are many manufacturers who apply the ‘may contain’ warning on their products, sometimes perhaps unnecessarily.

This makes choices for people with serious allergies very limiting. Or we increasingly ignore the ‘may contain’ type labels, which can also be problematic. A recent US study tested 186 products with precautionary peanut labels and found 16 (just under 9 percent) actually contained the allergen. The consequences of ignoring such labels recently proved tragic. A young man aged 22, Bruce Kelly, of Minnesota who had a peanut allergy, died of anaphylaxis earlier this year after eating a chocolate bar with a label that said it had been “made in a plant that also processed peanuts”.

These ‘may contain’ warnings do warrant some skepticism, that many companies prefer to slap on this type of warning to avoid all responsibility rather than display accurate warnings and labels on their products. It appears profits come first, not correct labelling. Even allergists are confused about these ‘may contain’ warnings and advice can vary from doctor to doctor. In effect, the random and unregulated ‘may contain’ warnings shift responsibility away from the manufacturer, and on to the severely allergic consumer to decide without any real information on which to base their decision. This needs to change.

Chocolate Easter eggs and treats in particular can be risky for kids with allergies because they are often made in the same factory or machinery as milk, nut and egg products. In particular this can be a real risk for those of us with severe nut allergies, as while some brands of chocolates may not list nuts, they can contain traces of nuts, and many allergists would recommend only purchasing chocolate produced in a nut free facility.  


 Chocolate free Easter?

One Easter break we spent time with some little cousins, and they did the cutest little Easter treasure hunt. Coloured plastic eggs were hidden throughout the garden, inside were small toys, treats and safe lollies.  We organised it so that my son could participate, and we didn’t include any of the unsafe Easter eggs. The three little cousins must have been chatting about this as my little man was again confused about it.

“Heh mum, they (his cousins) think I’m allergic to chocolate? Isn’t that like … crazy!?

Luckily, although the majority of Easter sweets and treats that are heavily marketed towards kids are not safe for children with food allergies, there are thankfully some considerate manufacturers who make Easter chocolates in a nut free facility. These are the kind of chocolates we do buy, many are also dairy and wheat, and egg free too. There are increasingly a lot more of these appearing on the shelves.

While my little guy is still finding it tricky to comprehend cross contamination or what ‘may contain’ labels might mean, I can’t really fault him on this. It is super complex and unfair. After all, wouldn’t the real and true Easter bunny chocolate factory be allergy friendly?


The Easter bunny sure is allergy friendly and inclusive at our house, amongst friends and I think increasingly childcare centres and preschools are on getting on board. Here are some quick easy and FUN ideas to get started.  


Fun-Allergy-Friendly-inclusive ideas:

There are so many wonderful alternatives to unsafe cheap Easter chocolates and raw egg decorating craft activities to explore. There are loads of fabulous inclusive Easter activities that are lots of fun for kids.

Easter egg hunt
Plastic fillable Easter eggs are usually found at craft stores. I have also seen wooden eggs too. Fill with small toys, safe chocolates, lollies or favourite treats.
Filler ideas - Make sure they are safe for little toddlers if they are included in the activity:
Small figurines like dinosaurs or lego figures, or playmmobil figures
Marshmallows (bunny tails)
Small bottles of bubbles
Gold coins (real ones)
Stickers
Bracelets or hairclips
Small toys
Safe lollies or treats
Bouncing balls
finger puppets
matchbox cars



Inclusive Easter craft ideas for home or the class-room
·      Decorate eggs with collage, paint or markers. Foam, wooden or plastic eggs can be found at craft stores.
·        Make Easter bunny ears with paper and collage
·        Paper plate craft such as bunny mask, or collage a chick or bunny shape
·        Make a basket to collect your allergy friendly Easter eggs

Practice inclusiveness
If you are a teacher planning an Easter hunt non food treats might be the most inclusive idea. For craft or cooking activities there are many ideas out there to ensure all children can participate, and all children learn about inclusiveness.

Here are some great links for parents, carers and teachers to get you started, but there are so many to find you will be surprised.

More Allergy Friendly tips and creative Craft ideas
Cooking and craft

Food allergies and Easter

Great Easter tips

Easter ideas with food allergies



Cooking with kids
Again, there are so many allergy friendly cooking activities with an Easter theme or just as a school holiday activity. Cooking with kids with allergies is a great idea, as children with allergies or coeliac disease can easily become fearful of food. Cooking involves children with food and can help ease anxieties around food.

Or if you are planning a cooking activity at school or kinder, or afterschool care, it’s an activity all children could be involved in when the recipe is adapted accordingly. Don’t forget to contact parents of children with allergies, coeliac disease and other food intolerances before the day to ensure all ingredients are safe.  



Great cooking activity, you can make with or without the kids!


Enjoy your fun activities with your children, whether it’s at home or school. There are lots of ways to make it fun and safe. If you are buying treats, remember always read the label every time as ingredients can change. Last, but not least you could leave out something special for the Easter bunny the night before, maybe something allergy friendly?



Read more about food labels