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

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.

 

 

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.

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”.

Fieldtrip to the Farm with First Grade class

 

 

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!

Death due to milk allergy at U.S. restaurant #advocacy #epipen #allergyawareness #anafylaxi #anaphylaxis via @MailOnline @AllergicLiving

A sad event in Minnesota, reminds us how important it is not to let your guard down. How important your adrenalin device(Epipen) is, and how risky it can be dining out when you have life threatening allergies.

Cindy Johnson, mother of 16-year-old Scott Johnson, says she asked staff at the Minnesota Nice Cafe in Bemidji if their gluten-free pancakes were also dairy-free during a rare dining-out last June for the teen, who’d suffered from the deadly allergy since birth.

They were assured by staff at Minnesota Nice Cafe that everything would be fine, that the grill would be cleaned prior to preparing Scott’s meal, and that they were milk protein free.  Shortly after eating two pancakes, Scott knew something was wrong.  Sadly, this day Scott had left his medical bag with his lifesaving Epipen and nebuliser at home.

Cindy rushed her son home. But when they got there, the epinephrine and nebulizer failed to calm Scott’s short-circuiting immune system.  It was too late.  Doctors told the Johnsons the dairy exposure had led to anaphylaxis so severe that Scott’s heart had stopped. Three days after the family breakfast, Scott died.

This sad story, reminds us all in the allergy community how important it is to ALWAYS carry your adrenalin device with you, how quickly to act, and to be cautious when dining out. Unfortunatley in the allergy community, we are treated with disconcern and lack of understanding from dining establishments regulary.  It is extremely important to never dine out with out your adrenalin injector, and to continue to raise awareness and advocate for those living with life threatening allergies.  It only takes one mistake…. life threatening allergies (anaphylaxis) is not just peanuts.

Please don’t judge or treat people’s food allergies as a choice they make.

Our thoughts and prayers go out to the Johnson family.

UPDATE March 25.2015 via Allergic Living 

Disney to stock Epipens: DISNEYMAGIC #disney #Anafylaxi #anaphylaxis via @WaltDisneyWorld @MylanNews @AllericLiving

As if we didn’t love Disney Magic already!  Now we have all the more reason to appreciate the place in our hearts Disney has always had.  Growing up in Florida, Disney was a staple in our lives, and everything about it.  From the toddler years with the family, to teenage years with friends.  So its natural to spread the Disney fantasy to my little ones.  We reside in Sweden, but when visiting family in Florida a trip to Disney is always on the agenda. The first time we took my girls, I was in complete awe of the understanding and compassion the entire establishment (hotels, parks, restaurants) have for people living with food allergies.  I had read about it while doing my usual allergy research for travel,  but to experience it first hand , especially after the not so accommodating public venues we are use to in Sweden for food allergies outside the home.  I remember being in tears at the end of the first day at the Magic Kingdom.  Disney World is a must in my book for all families with small children, but even more so when you are coping with food allergies.

Approximately 1 in 13 children suffer from life threatening allergies. That’s about 15 million families that have to plan for their travels accordingly.   Disney’s introduction to stocking Epipens at their parks and resorts certainly gives thousands of families a sense of ease.  This not only gives families with known allergies a realm of safety, but also an important factor for those undiagnosed with the allergy who may have an anaphylactic shock while in the Disney area. It’s good to know that Disney goes the extra mile.

Mylan Inc. has signed a multiyear deal with Walt Disney Parks and Resorts to put EpiPen and EpiPen Jr auto injectors into Disney theme parks and cruise ships to treat allergic reactions. Mylan’s EpiPen products treat allergic reactions, including anaphylaxis. They are given immediately after the reaction.

“Like life, severe allergic reactions are unpredictable, so people need to be prepared,” Mylan CEO Heather Bresch said in a statement. “We are very proud to be working with Disney, which already has a strong reputation for meeting the needs of people managing severe allergies, and believe we can further raise awareness of anaphylaxis through this collaboration and our joint commitment to education.”

“For our guests who live with severe allergies every day, identifying EpiPen locations is an additional tool they’ll have for their anaphylaxis management plan,” Dr. Pamela Hymel, chief medical officer for Walt Disney Parks and Resorts, said in the release. 

Now you will be able to easily see on park maps where to find your closest Epipen in case of emergency.  Emergency Medical Technicians and nurses trained to administer EpiPen Auto-Injectors will be available during First Aid station operating hours to assist guests experiencing a severe allergic reaction.

A reminder for those of you who already carry emergency epinephrine Auto-injectors, that this is not intended to replace your own medication in case of an anaphylactic shock, but assist in those who have lost theirs or not yet been diagnosed.  Always carry your emergency medication with you at all times!  But it sure is a relief to know Disney is on your side, and shares our understanding in the urgency of living with  life threatening allergies.

BIG APPLAUSE DISNEY WORLD Co.!!!!!!

Contact Pixie Lizzie for your Disney World needs, not only do they specialize in everything at Disney – they are especially focused on those traveling with food allergies, and can help with all of your reservations and accommodations! Contact here.

Global nut allergy crisis continues to emerge #återkal #recall #nötallergi #jordnötsallergi #peanutallergy #nutallergy via @dagensnyheter @Independent

The global epidemic in the food scandal involving contaminated spices with almond and peanuts is getting scary.  We’ve posted on this subject numerous times in the past few weeks, but we can’t urge enough to use caution when eating out or something you haven’t read the ingredients.  Don’t go by just the list from Santa Maria, if this is anything like the US, more and more recalls will emerge.  Better to use caution now until they get a grip on the situation.  If the spices contain cumin(spiskummin), paprika, curry, or undeclared “other spices” avoid them until the issue is controlled.  Be alert and do your research!  See our related posts: first post here , here, and here.

Santa Maria spices have done a random control, maybe after our phonecall to them inquiring if they were aware of the recalls in the US?   That same day we spoke with Livsmedelsverket, and they had just gotten the alert from the UK in regards to possible contamination that same day.  The spices are from the same areas in the Middle East(Turkey and India) that get exported globally, so the chances that the epidemic would spread globally was only a matter of time.  All this because of a drought and poor crops, and poor knowledge of the importance  and danger of possible undeclared allergens. This is not just a problem in the US and now Sweden, its all over Europe.  There are over 50 products alone just from Santa Maria,  in the hundreds all over the US, we certainly don’t  believe this is the end of the recalls….  BE AWARE.  Read more from DN here.

All this after new guidelines in December of declaring food allergens!  But note, that the recall pertains to unknown allergens that the seasoning manufacturers were not aware of.  This is why this could possibly be so widespread – its not just one missed batch.  It’s misinformation(undeclared) from the plants in the Middle East supplying a large part of the global population with these spices.

Inspire your children to LIVE #CysticFibrosis #Foodallergy #Matallergi

Another personal note for me today.  Saw this in a friends post, reminding us to inspire our children to LIVE.  Live life to the fullest of your ability, and don’t be afraid to be brave as long as you are knowledgable and manage your disability/disease.

This beautiful video goes straight into our hearts, for more reasons than one.

 

Skeptics to the overprotective environment Allergy parents live in learn the hard way via @ScaryMommy @gratefulfoodie #foodallergies #matallergi

In reference to my earlier post today, about how bullying begins with us as adults ESPECIALLY in regards to food allergies, go on to read the following articles below of how true skeptics(bullys) learned the hard way(karma).

Living with the diagnosis that your child suffers from life threatening food allergies is hard enough on the psyche as it is. The part where you teach your child how to become a perfect little adult suddenly gets multiplied by 100 and now you have so many other factors to think about when raising your child, all the while trying to include the “normal” things you teach your children about self identity, responsibility, kindess, etc. Two stories of how for two self-proclaimed skeptics to the food allergy community, seeing it mostly as a made up inconvenience for others to have to abide by,  becomes extremely real.  Read Andrea Johnssons story below aka @ScaryMommy.

I used to think peanut allergies were bullshit… until my kid developed one. 

And go on to read “Nut Allergies –  A Yuppie Invention” in the L.A.Times(prepare to become rattled)by the now infamous in the food allergy community Joel Stein… who later goes on to have a child that develops a severe nut allergy. Karma? Read his humbling interview by Caroline Moassessi / Gratefulfoodie

A Chat with Joel Stein – a Food Allergy Dad

1/3 of children with Allergies are bullied/teased in schools .. via @ACAAI @FoodAllergy #foodallergy #schools

According to a recent study from the American College of Allergy, Asthma & Immunology, 1 out of 3 children with food allergies are bullied and teased in schools.  Food allergy bullying is a growing problem in schools across the globe. About a third of kids with food allergies report that they have been bullied specifically because of their allergies.

The two main characteristics of bullying are its repetitive nature and the implicit imbalance of power between bully and victim. The imbalance of power inherent in bullying refers to the victims’ perceptions that they cannot easily defend themselves or stop the interaction. As a result, victims are left feeling powerless and vulnerable, which often produces devastating psychological consequences. While bullying with regard to food allergies isn’t all that different from bullying about other attributes, children with food allergies must bear an additional burden, because they already have the responsibility of taking care of themselves medically.

Read more about the study here and what you can do to help teach your children with or without food allergies about bullying via FARE’s 

Food Allergy Bullying: It’s Not a Joke

  – Disability. A disability can be physical, psychological  or intellectual and can affect life in different ways.  In account to a disability,  those you can see and cannot see , like using a wheelchair or those that you cannot notice as clearly, for example allergies, ADHD and dyslexi.

Its our job as caregivers to protect our children and raise awareness for a no tolerance policy towards bullying in schools due to food allergies. Ignorance teaches ignorance. You are your child’s role model. Do you know what to look for to identify if your child is being bullied? Visit FARE’s Tools and Resources page to find out what you can do to help, and please spread the word.

US Based Airlines… you asked for it @MailOnline @MetroUK #disability #allergydiscrimination #americanairlines

Nothing gets me more outraged than when we are discriminated against due to a medical condition we can do ABSOLUTELY nothing about.  Food allergies are on the rise at alarming rates across the globe.  It is so sad that the lack of information to employees who are to help passengers have a safe flight, is not a priority for U.S. based airlines(in our opinion).  This is personally where we have had the most issues travelling as opposed to European based airlines.

The planning involved in traveling with a person with severe food allergies is at least 10 times more extensive than that of a regular family. 

Exclude the treats not the child – #foodallergy #school #party via@GinaClowes @AllergicLiving

So well said by Allergic Living columnist, Gina Clowes for Allergic Living Magazine.

Birthday cupcakes, pizza parties, candy rewards and holiday celebrations. Not a week goes by without some kind of edible treat in the classroom.

For some, the solution is the “safe snack box”, a stash of safe snacks that parents of an allergic child will provide for times when unsafe food is served in the classroom.

To those of you who don’t have food allergic children, this may sound like a perfect safe solution for those affected. But for those of us living with  foodallergies, and parents to those children who are excluded from the “real” treats… it would be nice to not have to worry at parties and celebrations.  We GLADLY bring the “safe box” to ensure their safety.  But just once, we would love for them to be able to feel normal, and enjoy the treats like everyone else.

Please continue to read Gina Clowes article for her insight and tips on what to do instead of “food treats”.