#TealPumpkinProjectSweden #Halloween #barnmedmatallergi #kidswithfoodallergies #busellergodis

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Halloween is big with me, having grown up in Florida.  So when I moved to Sweden over 10 years ago, I sadly learned that Halloween celebrations were almost unheard of.  Thank goodness I worked at M.A.C. Cosmetics and was able to let my creativity flow and spread Hallloween fun with my co-workers and clients.

Lucky for us, a century later… Sweden has caught on a little.  And nobody is happier than me! We’ve always had Halloween parties and let the kids go trick-or-treating (bus-eller-godis).  When we lived in our apartment building in Stockholm, the neighbours were usually not prepared for the little monsters knocking on the door demanding candy “godis” or receiving  tricks “bus” if no candy was given….  But then we moved to Gällstaö, Ekerö.  And this is where my american self was re-inspired when a flyer dropped into my mailbox around the first of October, 2011. Gällstaö had its very own organized trick-or-treating activity arranged by an amazing American mom living in the community, wanting to spread our fun American traditions to the likes of all our friendly neighbours on the island.

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I immediately contacted Cindy (the amazing american mom) and offered my help.  I wanted to be involved!  This was so fun, I was SOOO grateful for this womans inspiration to wanting all the kids on Gällstaö to enjoy our fun American tradition, and making it easier by guiding swedes into it, by setting a time, date, place to gather, map of houses wanting to be involved as “trick-or-treat” homes, and even getting a donation from Gällstaö community to buy candy for the homes volunteering to open up when “bus-eller-godis” eager monsters come knocking on the door at said time. When I contacted Cindy to say I wanted to help, I of course had a hidden agenda in wanting to be able to reach out about allergy safety. So I GLADLY volunteered to purchase the candy with the donation money so I could read all labels, and know that the candy that Gällstaö bought was safe for those suffering from nut allergy (like my daughter). This is something my daughter had never experienced… being able to actually eat the candy she received when trick-or-treating.  Since this tradition is fairly new in Sweden, swedes aren’t accustomed to all the fun prewrapped halloween goodies we have in the states, instead they buy “plock godis” which is not only unsanitary when you think of all the little monsters and goblins hands that reach in those bowls to grab candy, but also not safe for nut allergy suffers because the risk of cross-contamination is so high.  So you can imagine my daughters (and hopefully other nut allergy suffering children) delight when she could actually eat a good percentage of that candy.  I have been on the bandwagon ever since, doing my little part in Cindys amazing and most popular Trick or Treat Event, by purchasing the safe candy.

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Last year, The Teal Pumpkin Project, created by FARE (Food Allergy Research & Education) started a campaign called the #tealpumpkinproject. Teal is the color for Food Allergy Awareness. The purpose of this project is formost to raise awareness of food allergies, especially around holidays like Halloween, when so many children with food allergies sadly have nothing to chose from when a house offers a bin full of snickers bars or assorted chocolates, etc. The teal pumpkin project emphasizes and urges homes to also offer “non candy” or “non food” treats, so EVERY trick or treater that comes by has something they can happily enjoy.  It doesn’t have to be anything fancy, and the list of suggestions for non-candy items is endless. Spider rings, pencils, fun erasers, finger puppets,  stamps, necklaces, glowsticks, pirate treasure coins, balloons,… the list is endless. Use your imagination!  Not only is it healthier for children, reducing sugar intake… but it also includes ALL children. Even those with food allergies. No child wants to be excluded, especially over something they can’t control – like a life threatening food allergy.

So here’s the deal, to join the #tealpumpkinprojectsweden :

  1. Paint a pumpkin teal and place it outside (this will signal to the children with food allergies that you support them, and have something safe for them)
  2. Make a sign! Letting allergy kids know you have something fun for them too!
  3. Buy non-food/non-candy to add to your assortment of treats to offer trick-or-treaters.
  4. Take a picture of your pumpkin and post it on Instagram #tealpumpkinprojectswedenteal pumpkin project- shari morpurgo- halloween treats- oct. 29, 2014-3Teal-Pumpkin-Project-Treats-2

Our pot of Gold in Åre #kidswithfoodallergies #allergibarn #nötallergi #nutallergy #diningoutwithallergies

This past summer, we made a last minute decision to go up to Åre and hike due to the lack of warmer swedish summer temps.  We found a cabin on blocket(Craigslist) since we need a kitchen to cook safe food in for our oldest with tree nut and peanut allergies.  Our first night there, we made a safe meal at home. On our second evening after a day of hiking, exhausted, we decided to try to find a safe restaurant and get a pizza(pizza is usually safe, because pizza joints generally don’t have other foods on the menu that increases the risk of cross contamination). The first pizza place we found, we experience a little bit of a language problem with the staff(norwegian), and the establishment just seemed unclean. That always sends off warning signals for me, to me that means a not attentive and serious kitchen – if the dining area is not clean, imagine the kitchen.  And that can mean everything to a person who cannot tolerate possible cross contamination(even if the risk is low when there are not many elements in this  particular establishment  that can cause cross contamination, I don’t like to take the risk with my 8year old). So we moved on… found a restaurant that served pizza… but also served other finer dining food.  My natural instinct of scanning the menu before we sit down, looking for nuts in other entrees, begins before the hostess reaches us. Then I give her the usual list of questions concerning their handling of food allergy guests…. Moments like this are key – if the first person we meet at the restaurant creates any kind of hesitation – we leave.  But she passed – reassuring us there would be a clear line of communication between us and the kitchen, and seated us.  Seated, we immediately question the server before they can begin placing bread etc on our table – after initially informing the server of our daughters severe allergy and risks involved in dining out,  we do relax, a  little.  Our daughter has the pizza, as do the rest of us.  Long story short, the staff was so helpful and reassuring… we ended up eating there 5 out of 7 evenings(not in our initial budget) but when the head chef made a special meal for our daughter consisting of filet mignon with balsamic sauce and freshly cut fries on the second visit there… our daughter was in heaven.  After that, the activities during the days were fun – but all she begged for  everyday was to go back to the restaurant.

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For a child that rarely gets to enjoy dining out, and if she does – the only safe places are McDonalds and pizza places in Sweden, experiencing a REAL meal at a restaurant thats made especially for her(its important she feels confident and safe too with the chef)is priceless. Of course we caved and let her enjoy this milestone moment, over and over again at our little summer getaway… our pot of Gold in Åre, wersens.se.

Thank you to all the knowledgeable and service minded staff at Wersens… your attentiveness to our special allergy needs dining experience made our visit to Åre the most memorable, almost more memorable than kissing a moose😉.

If you are in Åre, make sure to add Wersens Bar & Grill to your dining pleasure.  Delicious entrees, and beyond amazing staff!

Smart products that make our allergy kids a little safer #nutallergy #nötallergi #anafylaxi #anaphylaxis

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We are happy to be able to offer products that make it a little bit easier to let go of our kiddos when they go to school, camp, friends house or daycare.  Allergy alert bracelets raise awareness, educate and are great conversation starters for older kids, and perfect for the toddler that can’t relay his allergy properly to the vikare(substitute teacher) or the friends parent that are introduced to your kids when not in your care.

The medical bag, the SPIbelt is the most comfortable we have found yet for my daughter.  Its so stretchy that it can easily hold astma spray, two epipens, and other meds.  And my daughter has not complained once while wearing this bag.  I now have a sense of ease when she is running around on the HUGE school ground, in the horrible event that something were to happen.  Her epipen and astma spray are with her at ALL times, with ease.

 

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The bag is available for 239 kr in our tictail shop, and the bracelets are 49 kr

An Allergy Moms Lonely Vent #nutallergy #nötallergi #anaphylaxis #anafylaxi

I do EVERYTHING in my power to assure my daughters saftey and trying to prevent an unecessary anaphylactic shock and emergency trip to the ER. That is my duty as her mother, as her caregiver,  as her person that has everything all under control.  I take complete pride in seeing her complete look of trust when she looks at me, for an “ok” in different environments.  It means we have taught her to be careful always when it comes to being one step ahead of her allergies.

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On Ice Practice

My daughter, 8 years old, has a passion for figure skating and is well under way to start competing in the Fall of 2015. This past year I think I have resided more in the ice rink venue(not heated) than at home, and I do it with pleasure. I really don’t have complaints about having to be there.  Being a mom to an anaphylactic daughter, her surroundings have to be safe, and if they can’t be safe – I will be to be there to keep her safe, until she is old enough to control her environments by herself.  I am the mom who hangs out in the locker room, jumping clear across the room when another skater offers her friend some of her snack bag of nuts – great protein energy (even though numerous emails have gone out to parents in regards to my daughters allergy).  I know from experience that those routine emails that go out to parents in schools and parents of other children participating in activities that most see these as just “words” not warnings, and by some as a bit of an annoyance that we are trying to regulate what you feed your child.  The fact that most don’t want to understand is that my child can die from what you chose to give your child rarely sinks in for anyone not closely related or someone who knows someone with anaphylactic allergies.   Most ONLY know  that “theres the kid with the Epipen”.

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Fieldtrip to the Farm with First Grade class

 

 

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Figureskating strength and endurance practice (not at her regular “safe” school) She’s off behind the fence behind the soccer players, I try to keep my distance while still being close enough in case of an anaphylactic shock.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The discussions I have with schools, coaches and other parents not able to go the complete distance in understanding what it is to live with anaphylactic allergies often makes me feel lonely and frustrated.  I embrace the internet with all the connections and communities out there geared towards others living with allergies, and wish we all lived in a big gated community🙂.

But such is not the case, and often I am left being the one staring down the end of the track field trying to see how my daughters breathing is without wanting to be too close to step on the coaches toes, because they know “she’s the one with the allergies” but I often ask myself… what would they do when a anaphylactic allergic reaction occurs?  Do they notice her breathing, do they see her rash?  I am the one slowly pacing myself behind the group during the endurance building hike in the woods.  Doesn’t she have her epipen/adrenaline bag on her at all times?  Yes, of course, but do I trust an 8 year old to jab herself in the leg by herself, let alone know the symptoms of an anaphylactic shock when her coaches are way ahead of her?  Would you risk your child’s life on hoping she will react as you have taught her in an emergency situation and you just sit back or run errands like the other parents or catching up on social gossip during practice?  Think again.

I am the one who joins the teachers on the numerous field trips, because they have their hands full with the “problem kids” instead of having to worry about wiping down the public table the kids will be eating lunch at or worrying about telling them to wash their hands before putting something in their mouths.  I am usually the only parent that STAYS at the friends birthday parties, analyzing surroundings, bringing the safe cupcakes for everyone, asking to see every ingredient label a week ahead of time (all so that she can be like everyone else, as much as possible – and not feel excluded).  Talking about this usually doesn’t get me anywhere, and I also don’t feel like it is anyone elses responsibility to take on – I definetly don’t want my daughter not being the one invited because the parents on top of usual party planning stress have to worry about the kid that may die – I am not doing that to her or to the other parents.  After school playdates other than at our home?  Pretty much non-exsistant in the reality of realm of time and planning during a weekday, birthday parties and outings are hard enough.  I am the parent who cannot work full-time, because I HAVE to be hands on at all times in assisting in random things that come up that may prevent my daughter from being safe – (but mostly assisting to create an environment like everyone else has – just thoroughly checked by me), and when I say this I don’t mean the accidental fall off the swing at school , the broken leg, etc…. I am there because her everyday envinroment doesn’t allow her to be like other kids, unless I am there to think one step ahead, because unfortunately the other adults responsible for her safety do not think the extra step.  This is nothing I am imagine they would, its impossible if you don’t live with that way of thinking from experience, so I am not expecting or asking that of anyone .  It would however be nice to be accepted for having to be the type of family we are because we have to – my daughter having anaphylactic allergies is not a choice, this is not an eating trend we are vigilant about – this means life or death for her.  So not being  treated as the helicopter parent and having eyes rolled at us on a daily basis (its amazing to see it happen right infront of my face sometimes)  would ease the loneliness.

So, to most I am accepted everywhere as being the protective(over?)parent.  I think 10% of them may understand me, the rest I feel judge me as an overprotective parent. Do I care?  No, not really.  My daughter is more important to me, and will always be, more than how anyone choses to judge my parenting skills.  Is it lonely?  Yes, it is.

Again, embracing all the allergy aware and friendly communities online, as well as the adults around us who actually do want to learn and know how to keep her safe, I wouldn’t be as strong and as able of an allergy parent if it weren’t for you!  THANK YOU! You know who you are!

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Shout out to eco-friendly company Bear Nibbles @Follow_the_Bear #bearnibbles #biofood #nutallergy #nötallergi

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“pure fruit rolls with no added nonsense. Grrrr! ” 

What started out as disappointment quickly turned outrage, and then compassion rules the day!

Let me tell you what happened a few weeks ago, when I see this fun new snack while placing my online grocery order.  No added sugar, no preservatives, and never from concentrate! Its ecological too!  Sometimes the store doesn’t always list the ingredients in the product description online, which is frustrating but I take a chance and order one anyway, in the meantime I send a quick email to the producer, BearNibbles UK asking about the ingredients since they are not listed on the website – or rather, allergens were not listed. Fingers crossed and hoping its something my TN and PN allergic daughter tolerates,  but I am saddened when I read the translated label (that is a sticker stuck over the original UK ingredient label) and on the translation it reads “kan innehålla spår av nötter” – can contain traces of nuts.  Since I have had an issue in the past with a certain Grays Food Stores(import company of American goodies), although that time it was the other way around – and far too long of an aggravating story to include in this post, but I DO BOYCOTT anything imported by Grays, just to make a point, BUT what I was getting at, from EXPERIENCE I know to peel back the label of the translation to safeguard.  And wouldn’t ya know it, there is nothing in the the UK original ingredient list that in any way specifies that there are traces of nuts in this product.  A little angry and confused, I call the distributor for Sweden for the Bear Yo-Yos, BIOFOOD-BIOLIVS AB.  I explain the situation to the first person who answers the phone, who I feel completely did herself a disconcern by saying “oh we put that on everything (may contain traces of nuts) to safeguard ourselves”…  I cannot explain to you the anger building up inside as I think of the constant disregard for the allergy community. Instead of HELPING us find more things we tolerate, companies decide its easier just to write “may contain” on everything.  As if it isn’t hard enough already living with life threatening allergies, this company(BIOFOOD) obvisouly didn’t want to be bothered with helping those living with severe allergies expand their product range of foods they tolerate.

Determined to get to the bottom of this, I call the company itself – Bear Nibbles UK.  And low and behold I am met with an extreme genuine compassion from the “bear helpdesk“.   And after an email, she once again called me to ensure me to 100% that the products are completely safe for my daughter to eat and went on to promise that they would contact their distributor in Sweden and clear up the mistakes, which they have – the label in Sweden is now changed. Here is part of her email,

“Janny, our Head of Quality Control, has a son with a severe nut allergy and has therefore made it her mission over the last couple of years to make sure our products are completely nut free. She says that she thinks it is a wise step that sensible people like yourself get in touch with the people who actually make the products for reassurance and then make their own decision based on the advice given. Different brands can interpret the nut warning differently and therefore it is always good to check with each one.

BEAR hugs,
Tilly”
I am frustrated that we as allergy parents must continue to be one step ahead of companies that others wouldn’t think twice about, and that we are forced to second guess often due to prior bad experiences. I can easily state that the research and preparation involved in providing safe food for my daughter is quite comparable to at least a part-time job!  But then when I get met with such compassion, understanding and gratefulness from companies like BearNibbles UK, I in no sense feel at all sorry for myself for being so thorough. Not only can my daughter enjoy these great snacks – but now other TN and PN allergy sufferers can as well!
You can find Bear Nibbles products at many local eco-friendly stores as well as Coop and Mathem.se.
We gladly support and promote companies filled with love and compassion. And once again, much love and shout out to Bear Nibbles UK!!

Popular Epi-pen Carrier now available in our Shop! #medicalbag #epinephrinecarrier #medicinväska #anaphylaxis #anafylaxi

We are happy to now offer the Spibelt epinephrine (adrenaline)carrier in our shop!

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My daughter has been using this belt for two years now at school, with ease.  Its discrete enough to not get in the way of her play while at recess(rast), and definitely gives me as a parent a heightened sense of safety for her knowing that SHE has it with her at all times.  I know that the classroom kit is readily available, but when she is far out up in the woods on the school ground, I want her epinephrine to be readily available in the case of an emergency. Minutes count, and for a teacher to run back into the classroom under a stressed moment didn’t give me enough comfort when leaving her at school.  It is also perfect when we have outings to parks, theme parks, bicycle rides, hikes… And even though we as the adults have her entire medical bag with us at all times, I think this is a great way to give her responsibility for her condition.  It has also shown to be a great conversation starter for her to spread awareness about life threatening allergies when friends ask about her trendy “fannypack”🙂.  This is part of her everyday wardrobe, giving both her and I comfort that with this she is safe in any environment with her allergies.

Have your EpiPen® or other brand epinephrine auto-injectors or Auvi-Q™ with you at all times with the convenient epibelt. Sleek, expandable and secure.  These belts enable you to carry your epinephrine (Pens or Auvi-Q’s) comfortably without bulk and can easily be camouflaged under your shirt if you choose, but cool enough to be worn on the outside. These belts are designed to stretch to accommodate different epinephrine auto-injectors. 

  • Child’s belt fits waists 18-26″. Adult belt typically fits ages 8+
  • Pocket expands to 6″ x 3″ x 2″
  • Accommodates UP TO 2 EpiPen® or other brand auto-injectors or Auvi-Q’s™
  • Washable
  • For best results, position it below the waistband
  • Ideal choice for athletic and active kids.  
  • Now available with a Pass-through (PT) for insulin pumps, headphones and other cords.

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There is also an adult size that I use when I go for my run, that fits keys, phone, credit cards, etc easily and stays in place(no bouncing around)

Click here to order via our Shop!

Nut-allergy Dream come true… SAFE CANDY #nutfree #nutallergy #nötallergi #godisbolaget

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Tremendous kudos going out to Godisbolaget in Bromma.

We happen to have nut allergies in our family, so we don’t get to do what all the other kids do on Saturdays at the local grocery store-  Ica or Coop.  Candy scoopers in hand, we’ve watched by the sidelines as my daughters friends dive into the candy bins on the Saturday shopping round… what color, what flavour – chocolate or fruity flavour(?)- many even sneak a taste before choosing.  Due to the high risk of cross-contamination this is an experience my daughter(severe tree nut and peanut allergy)has never been able to have.  I remember this from childhood as being one of the highlights of the grocery store trip on saturdays!  I have once  been able to find the candy supplier early in the morning when they stock the open bin candy containers and begged to come with my daughter one morning when they stock.  Which we did do before school on a Thursday morning at 7am… get to pick candy out of NEW containers not contaminated with cross contamination of nuts from surrounding bins.  And although this experience was very satisfiying even at 7am before school its still not like what the other kids experience, and the candy stockist looked quite stressed to be on her way, and it took quite a bit of planning to be there at an exact time during the school week.

About a month ago, driving home from figure skating practice, I see a sign for “Godisbolaget“, open 10-20 every day.  I think, we ought to give that place a shot, see what they have to offer, if we can read labels etc, and if they can assist in our allergy special needs.  See the thing is with candy bins, my daughter tolerates most of the candy with the ingredients,  we just can’t take the risk of the nut contamination when customers pick candy from ALL containers with the same candy scoop – this can end up in anaphylactic shock and ER trip – totally not worth the risk.

Its a Sunday morning, slow… for a candy store. These young gentlemen in the store could not be more willing to understand and complying of our needs when I explain our allergy situation.  I explain our dilemma and immediately they say no problem. Take a look around what you want, we will grab a clean candy scoop and open new candy containers for you, no problem. My daughter, with a severe nut and peanut allergy was completely beside herself.  We browsed for about 20 minutes deciding what she would try… then one employee followed us and opened new containers for everything she wanted – she even got to taste most of it before she filled her tub with endless sorts of different candies.  My daughter talks about this place now like its Disney World!

This entire experience sounds silly to those who take it for granted, but for a child that has been standing by on the sidelines for so many years…  it was a dream come true. We even went back two weeks later and bought enough candy so she could have her own “candy shop” theme at her birthday party.

Thank you again, to companies that care and understand with empathy what it is to have life threatening allergies.

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