Generic vs. Milan’s Epi-Pen

A few days ago I picked up a refilled prescription for my oldest son of what I thought was going to be Mylan’s  Epi-Pen 0.3 mg twin auto injectors.  This is what we’ve been accustomed to using since the big recall happened with the Auvi-Q auto injectors fall of 2015.  Despite all of the controversy with Mylan, and the increase in pricing for the Epi-Pens, we have unfortunately had to stick to this prescription, as our insurance RX program never filled a generic option in the past.

To my surprise, when I arrived home and opened up the bag from the pharmacy, I receive 2 twin packs of the Authorized Generic form of the Adrenaclick, 4 auto injectors 0.3mg manufactured by Lineage Therapeutics.  This generic version was apparently introduced to the market back in June of 2013.  It boggles my mind why it was not available to me as an option until now???

At first, I was really UPSET because the pharmacy didn’t notify me that my prescription for Mylan’s Epi-Pen had been replaced by the Adrenaclick generic.  After a few minutes and once I cooled down, I realized it was exciting to finally see a “generic form of the life saving auto-injectors!”

My excitement quickly turned to ANGER again when I realized that the devices did not come with any type of training device!  What???  The box that contains the twin injectors has a spot for a trainer, but NO trainer was included in the box!  I was LIVED to say the least!

I quickly went to my laptop and typed in the manufacturer’s website which is http://www.epinephrineautoinject.com/contact_lineage.php.  The site contains a link which allows you to order ONLY 1 training pen at a time!  There is a 1-800 number you can call to order more than one training pen at a time.  Of course, I called it right away thinking about all of the people in our lives that we would need to train how to use these generic auto injectors- school staff, coaches, kid sitters, our boys of course, myself and my husband, friends, grandparents, aunts and uncles, etc…the list goes on and on.

After being on hold for approximately 5 minutes, a nice customer service lady answered my call, and when I told her that I would need to order at least 4-5 trainers, she mentioned they were backordered by 4-6 weeks!  She suggested I go to the website and individually order 1 trainer at a time.  This is what I did…I ordered 2 in my parents names, 1 in my name and 1 in my husband’s name, 1 in my sister’s name, and 1 in my brother-in-law’s name…WHAT A PAIN IN THE BUTT!  Needless to say, we’ll see when these trainers actually arrive!

So, all in all, it’s absolutely wonderful that my insurance RX program finally gave me a generic option!  It appears that consumers dealing with anaphylaxis do have more prescription options available now. Here are the PROS & CONS broken down for you:

PROS:

  • Price- my out of pocket expense for 1 pack of twin injectors was approximately $15.00 compared to hundreds for Mylan’s Epi-Pens
  • Size- generic packaging of auto-injector is approximately a 60% reduction in size compared to Mylan’s Epi-Pen.  Since we have 2 boys and they do not carry a purse, it will be easier for them to carry these in their pockets

CONS:

  • Trainers do not come with auto-injector prescription
  • Trainers must be ordered separately on manufacturer’s website
  • Only 1 trainer can be ordered online at a time, for more you must call customer service hotline
  • If you want more than 1 trainer, these orders are on back order for 4-6 weeks!  Unacceptable!
  • It took the pharmacy over 5 business days to fill the script…I’m assuming because Meijer does not keep this generic version on their shelves.  This was frustrating and thank god I had extras and didn’t need it immediately!
  • Trust- I don’t trust the generic as I have not had to use it yet
  • Quality- I do not know the quality of the generic
  • Learning Curve – it is cumbersome to re-train everyone in our life with new auto-injectors- cannot train them until trainers arrive
  • I have 4 new generic auto-injectors that cannot be used since we do not have the trainers…our boys will need to practice on trainers 1st before we feel comfortable with them carrying these devices

While there are currently more CONS than PROS at this juncture, I’m confident once we have an opportunity to familiarize ourselves with this generic, the PROS will begin to outweigh the CONS.

If you have any experience using these Lineage Generic devices I would love to hear your feedback!  Please contact me or leave feedback in the “comments” section of my post.

Once the trainers arrive in the mail I will update this post with feedback regarding re-training everyone/ease of use.

~Erika

 

The Little Things about Food Allergies Most People Don’t Even Realize

I was chatting with a few of my girlfriends yesterday over coffee about how our dog had recently been sick.  As unfortunate as it is, our two year old Wirehaired Pointing Griffon, Scout is a sock eater.  Yes!  He loves to eat our boy’s stinky socks when left on the floor!  No matter how often I remind the boys to put their dirty socks in the laundry bin, they still end up on their bedroom floor from time to time.  It’s been a challenge since Scout was a puppy.

Recently, Scout ingested something…we’re not sure what it was but he started acting peculiar last week and was not eating like normal.  I took Scout to the vet on Tuesday and thankfully after X-rays, he didn’t have an obstruction.  However, he did have lots of inflammation and irritation in his gut from whatever it was that he ate and then passed.

Long story short, our vet recommended we feed Scout canned dog food for the next couple of days since it’s more easily digestible.  The canned dog food at the vet’s office contained dairy and eggs so I had to take a pass.

I went to our local feed store and explained to the staff that I was looking for a canned dog food that didn’t contain dairy, eggs, or nuts.  We had about 3 people, including myself, reading every canned dog food label in the entire store.  Finally, we found a grain-free lamb dog food that was dairy, nut, and egg free.  To top it off, Scout loved it thank God!  And yes, Scout’s normal dried dog food is dairy, egg, nut and grain free too just in case you are wondering!  He’s on basically the same diet the rest of the family is on and he never complains!

My girlfriends couldn’t believe that I have to read the ingredient listings on the dog food labels.  Reason being, if Scout ate dog food that contained milk, eggs or nuts and then licked either of our boys it could mean TROUBLE!  Allergic reaction!  My friends said to me, “Challenges that you face on a daily basis with kids that have food allergies are not even on our radar, such as reading the ingredients on the dog food bag.”  For once, I felt like my friends actually understood what it was like to walk in my shoes.

This recent conversation with my closest friends struck a chord for me…my brain went into overdrive as I started thinking about all of the labels I have to read on a daily basis on all of the products in our home and when I’m grocery shopping.  For example, shampoo, dish soap, laundry detergent, body lotion, makeup, chapstick, sunscreen, prescription medications, hand soap, kleenex, deodorant, cleaning supplies, dog treats (most of which contain eggs, nuts, and dairy), etc.  The list goes on and on….now I have a HEADACHE!  These are not even food items mind you!

I guess the point I’m trying to make here is that parents of children of food allergies obviously have to be diligent with food labels.   That diligence extends beyond to so many more products that we come into contact with daily.  Most people would have a permanent headache if they had to continually check everything the way that we do.  I wouldn’t change it for the world…I’m just trying to help people gain awareness about the challenges parents of children with food allergies face encounter regularly.

I digress…Namaste and have a wonderful weekend

~Erika

 

Update on Food Allergic Reaction Yesterday

 

Many of my reader’s saw my post yesterday on my Facebook page about our son’s recent food allergic reaction.  This past Tuesday night I made a new vegan type of soba noodles for our family as a side dish.  The label read “vegan” and the only allergens on the ingredient label were “soy and wheat.”  Our youngest son Christopher ate his entire bowl of Soba noodles and 10 minutes after dinner he said to my husband and I that his stomach was really itchy.  My husband and I believe there were most likely trace amounts of eggs and/or dairy in the new product I had just cooked.  There is really no way to tell however and I’m researching 3rd party companies to test the ingredients of the noodles that were consumed.

We lifted up his shirt and he was LITERALLY covered in hives on his stomach and back.  I’ve never seen so many hives on a little guy!  What was strange about this reaction was that is was just topical hives.  In the past, when Christopher has accidentally been exposed to eggs or dairy he has unfortunately experienced more serious anaphylactic symptoms such as diarrhea, vomiting, itchy/scratchy throat, etc.  Not to discount all of these hives but as an asthmatic it was clear that he was not having any breathing difficulties and we treated immediately with 25mg of Benadryl.  We continued to monitor Christopher throughout the night, and although it took about 5 hours for the hives to dissipate, thankfully he was not showing any signs of anaphylactic shock.  In addition to the Benadryl every 6 hours I also had so Prednisone on hand and I gave him 10mL of that in addition to half of an adult dosage of Zantac which also acts as a histamine blocker.

After a long night, Wednesday morning arrived and Christopher seemed to be in the clear.  He was receiving dosages of Benadryl every 6 hours and I had consulted not only a nurse on staff at U of M where is treated specifically for food allergy, but also his local pediatrician.  At about 9am yesterday the hives started reappearing FULL force over the course of 2 hours and at that point we made the decision to drive him to the hospital.  I just want to stress that he was not showing any signs/symptoms of anaphylactic shock.  We decided to take him to the ER because we couldn’t get an appointment with his pediatrician until 4:15pm and we were concerned that the Benadryl was not property controlling the histamines.  We feared that the hives may eventually lead to additional symptoms such as pulmonary and other anaphylactic symptoms.  On the way to the hospital I spoke to my friend on the phone who was an ER doc and he suggested we administer the Epi-pen which we did prior to reaching the ER.

I believe the details of this experience are critical in helping others understand how to properly react during an allergic reaction, hence the long length of this blog post.  And again, this reaction was completely different from all others before.  Upon arriving at the ER we were taken back to a room almost right away given the nature of having administered Epi-Pen.  At the ER Christopher was given 50mg of Prednisone, 25 mg of Benadryl, and Zantac (1/2 adult dosage I think 10mg)…his vitals were good and he did not need an IV.  Christopher was an amazing trooper and a BRAVE little boy despite his discomfort.  After being in the ER for about 20 minutes his hives began swelling all over his face again (right eye started to swell up a bit), hives on back, chest, arms, buttocks, legs, etc. began to get worse.  After consult again with ER doc we decided to administer another Epi-Pen.  Our AMAZING nurse administered the Epinephrine through a syringe and Christopher said it “wasn’t as bad as the Epi-Pen.”  He was really in good spirits.

The 2nd dosage of Epi decreased the topical symptoms and swelling and we were discharged from the hospital after about 4 hours since his symptoms were under control and we live less than 2 miles from the hospital.  Needless to say, about 2 hours post-discharge hives began to appear again but not like before.  Our ER doc who was wonderful as well stated that we should expect the hives to come and go on and off for days…closely monitor him and continue prednisone, Benadryl and Zantac to taper drugs off for the next 3 days.

Last night was another long night as Christopher was covered in itchy red bumps, some of which were swollen, and others were just dots on his body and face.  Poor little guy.  Cortisone didn’t really help with the itchiness unfortunately.  We’re now on day three of the reaction and he’s in good spirits and I would imagine today will be more of the same…onset of hives followed by them coming and going as his body continues to flush out the histamines.

Anyhow, the last 2 days have been a whirlwind of emotions for us as parents and for both of our little boys.  Christopher has been such a brave little boy and so tough and strong!  I’m so impressed with his positive attitude through this entire ordeal and his eloquence during such a scary situation.

I’ll continue to post updates on my Facebook page as the days continue….I apologize for the rambling and any possible typos in this post as I rushed to get this post out in between caring for our little guy.   Additionally, I placed a complaint with the FDA regarding the product I fed the boys for the possibility of undeclared allergens…the verdict is still out on this until we receive the results of the chemical tests of the product.  I didn’t want to mention the name of the manufacturer of the product that I believe caused the allergic reaction until more facts are discovered relating to the ingredients.  Furthermore, I do want to state there is always the possibility that Christopher is allergic to another ingredient in the noodles that we have not been aware of.  Ie. perhaps he developed or has a new allergy that we do not know about…

Vegan Hot Cocoa – Perfect for this Time of Year

hot cocoa

It’s snowy and cold here in Northern Michigan.  Today is the first day of our downhill ski season  and I thought it would be timely to post my delicious hot cocoa recipe.  Many children that ski often look forward to hot cocoa breaks in the lodge to warm up from being out in the elements.  Obviously, our boys cannot drink the hot cocoa from the vending machine in the cafeteria since it contains “milk” as one of the main ingredients. 

Over the years I have been making my own dairy free version of powdered hot cocoa mix.  I make several individual servings for my boys to use throughout the ski season. They simply put the zip lock baggie in one of their ski jacket pockets, add hot water from the cafeteria “hot water” machine, stir, and they are the happiest kids in the lodge.  It’s creamy, warm and delicious!

Promoting Ways to Live a Healthly Lifestyle in Rural America
Small Town Allergy Mom™

 

Here’s my recipe which has taken a few years to really perfect:

Dairy Free Hot Cocoa Mix

Yield: 8-10 servings

Ingredients:

1/3 c. unsweetened cocoa powder (I use Hersey’s)

1/3 c. granulated sugar

1/3 c. powdered soy milk (I use Better Than Milk Vanilla Soy Powder purchased in bulk from amazon.com- it’s the creamiest!)

Method:

Mix all of the ingredients together with a wire whisk in a bowl.  I will often double or even triple the recipe making a huge batch that I store in an air tight container for the winter.  I will then scoop about 3 Tablespoons of the mix into several small ziplock bags for my boys to take skiing each day.  It stores well and is easy for them to grab out of the pantry in individual servings.

You can also add dehydrated or mini marshmallows to the individual baggies.  I usually add these since my boys love marshmallows with their hot cocoa like most children.

Just add hot water to the mix, stir and enjoy!  This powdered hot cocoa is not only Dairy Free but it’s creamy and delicious as well!  Not to mention, easy to take on the go whether it’s skiing, sledding or ice skating!

 

Safe Halloween Candy List

Halloween Picture

Well it’s that time of year where people start asking me for a comprehensive “Allergen-Friendly” Halloween List.  Over the years my list has grown quite a bit which is amazing for parents with children that have multiple food allergies.  There are so many wonderful options nowadays that we can buy for our children and ensure they will have an amazing SAFE Halloween!  Please Note: ALWAYS check ingredients!  This list is only meant to be used as a guide.

Additionally, if you are supporting FARE’s Teal Pumpkin Project this year as we always do, please have a several non-candy treat items for children that may not be able to have candy at all.  Typically, I have a bowl of pencils, erasers, stickers, temporary tattoos, small toys, etc.  These can all be purchased at your local dollar store.

ENJOY!  ~Erika

  • DIVVIES Chocolates
  • Amanda’s Own Confections
  • No Whey Chocolate
  • Enjoy Life chocolate bars
  • Peeps (some flavors have “Milk” double check ingredients)
  • Swedish Fish
  • Mike and Ikes
  • Surf Sweets Natural Gummies & Jelly Beans
  • Starburst Tropical Candy Corn (the only candy corn brand I have found to be egg-free)
  • Laffy Taffy
  • Smarties
  • Lifesaver Gummies
  • Sour Patch Kids (most varieties I believe)
  • Dum Dum Lollipops
  • Hot Tamales
  • Starburst fruit chews, lollipops, & jelly beans
  • Jolly Rancher hard candy (lollipops are made on shared equipment so I do not purchase them)
  • Kraft Marshmallows (and most marshmallow brands)
  • Twizzlers
  • Skittles (most flavors I believe)
  • PASCHA Chocolate bars
  • Airheads (most flavors)
  • Pez

ALDI is Rivaling U.S. Grocery Store Chains with Low Cost Organic and Allergy Friendly Foods

 

aldi-corporate-2

Last year I authored a post about how I started shopping at the German-owned grocery chain ALDI and how I absolutely LOVE IT!  ALDI is one of my favorite stores to grocery shop at because it offers many low cost organic produce options.  They also have a corporate policy to sell foods that do not contain certified synthetic colors, partially hydrogenated oils, MSG from all its private-label products, pesticides, synthetics, and hormones.   ALDI  is constantly increasing their line of Gluten Free Foods, which are private labeled under the Live G free name to keep costs low.  Many of the Live G free foods are also free from many Allergens!  And I might add- DELICIOUS!

aldis

I have spoken to many of my friends about the benefits of shopping here and unfortunately the buzz I have received on the street is that many people think it’s a “low-income” type grocery store.  They are just not informed about the many wonderful products this store sells and the fancier foods they carry to compete with the consumers that frequent Whole Foods.  They now carry higher end specialty products such as artisanal cheeses, quinoa, coconut oil, and smoked salmon according to a Business Insider article.

In a recent press release from ALDI corporate, the Vice President of their Saxonburg Division stated, “ALDI has a different style when it comes to grocery shopping and that differentiation has helped make us one of the fastest growing retailers in the US,” said Hart.

ALDI is currently in the midst of a huge expansion plan in the United states.  By the end of 2018, it will bring fresh and high quality groceries to more than 45 million customers each month.  To reach its aggressive goals, ALDI will create more than 10,000 new jobs at its stores, warehouses, and division offices in the United States alone!  Once this $3 billion expansion is complete,  ALDI will have nearly 2,000 stores marking close to a 50% increase in only five short years!

ALDI has taken away market share from popular grocery store chains such as Walmart, Kroger and Whole Foods in the U.S.  They are able to continue to keep their costs low by offering consumers low pricing by limiting inventory to a lean selection of private-label items.  Whereas, traditional supermarkets  typically carry several different brands of a single product.  ALDI also invests far less in customer service and merchandising than traditional grocers.  Most of the store’s grocery items are placed in their shipping cartons to keep restocking quick and easy.  Consumers must pay a quarter ($0.25) deposit for a grocery cart (which you get back when you return the cart), bag your own groceries, and either bring your own grocery bags, or purchase bags they have for sale.

I certainly don’t mind taking a few extra minutes to bag my own groceries if it means heathy LOW COST organic foods free from chemicals for my family at a cheaper price!

If you haven’t shopped at an ALDI yet you are definitely missing out!  I encourage you to try it.  Here is a picture of many of the allergen-friendly products our family loves from ALDI’s:

290

In addition the products above my family also loves these allergy-friendly products from ALDI: pickles, many cereal varieties, hormone free turkey and ham lunch meat, all kids of fresh organic produce, whole wheat bagels and bread, jam, many varieties of Clancy’s chip products, coffee, organic spiral ham during the holidays, frozen wild mussels, canned albacore tuna fish, German red and white sauerkraut, hormone free maple bacon, frozen chicken fingers.  I like these paper products too: quart sized zip lock baggies, aluminum foil, paper plates, ultra strong paper towel and toilet paper.

Enjoy and have a great weekend!

~Erika

 

 

Please Help Support FARE’s Teal Pumpkin Project this Halloween

 

teal-pumpkin

With everyone into the full swing of fall and Halloween right around the corner, I thought it would be appropriate to post about FARE’s very successful Teal Pumpkin Project.  FARE (Food Allergy Research & Education) launched this successful campaign a few years ago and it has taken off across the country to bring awareness about food allergies and this growing epidemic.  Additionally, it advocates for a safe Halloween for children that have food allergies by encouraging homeowners to offer safe non-candy alternatives on Halloween.

In year’s past, my boys and I have painted a few pumpkins teal and set them on our porch to let trick-or-treaters know that we have safe “non-candy” options for children that have food allergies.  We are excited to paint our pumpkins this year as well!  Additionally, you can print a picture of a teal pumpkin from the FARE website and hang in in your window to notify trick-or-treaters that you are participating in the Teal Pumpkin Project.

This year FARE has partnered with Michael’s craft store which is selling teal paint for your pumpkins and CVS Pharmacy also has accessories to decorate your home with teal pumpkins.  This is an amazing campaign and I hope you will support food allergy awareness and place a teal pumpkin on your front porch on Halloween.  Thank you for your continued support of this AMAZING campaign that helps to make kids with food allergies feel included and most importantly enjoy a SAFE Halloween!

Please click on this link to print your paper teal pumpkins and learn more about this project at FARE:

https://www.foodallergy.org/teal-pumpkin-project

Print

~Erika

The Anxiety of Raising Kids with Food Allergies

stress-ballstress-relax

According to Merriam-Webster Dictionary ANXIETY  anx·i·ety \aŋ-ˈzī-ə-tē\

is a noun and the simple definition is “fear or nervousness about what may happen.” 

In our hectic modern-day society parents are extremely busy multitasking from day to day and trying to fulfill work, school, extracurricular and social schedules.  How do we fit everything into just 24 hours a day?  Simply raising children that do not have any health problems or disabilities can be a challenge for most parents throughout the world.  After all, we all want our children to grow up and become successful contributors of society, don’t we???

This raises an important point about how to deal with the anxiety of raising a child or children with food allergies and how to properly manage this day-to-day worry?  My boys CAN DIE if they ingest only a trace amount of dairy, nuts or eggs!  Do I have anxiety that relates to caring for our children?  HECK YES I DO!   

I’m by no means a medical clinician, but I am a MOM and I have had to learn how to cope with my constant worry about my children’s health and safety for over 8 1/2 years now.

People deal with anxiety in many different ways, from not acknowledging it may exist, to proactively managing it by either exercise, meditation, pharmaceuticals, alcohol, food, yoga, etc…to each is his/her own.  The point I’m trying to convey in this post is that as common as it is to have anxiety from caring for a child or loved one with life-threatening food allergies, it is also just as important to (1) Acknowledge you do worry and (2) Learn how to deal with it in a way that works best for you.

I have been an athlete for as long as I can remember.  I competed as a ski racer for the better part of my life, and competed in golf and tennis throughout my youth and still enjoy these activities today.  For many summers in my mid 30’s I trained hard and raced in many triathlons.  I love the dedication it takes to train really hard and reach your performance goals!  It’s simply in my DNA to be a competitor.  Most of my family members competed at high levels during one point in their lives.

Whether I’m mountain biking or trail running with our dog Scout, these activities have helped me to manage my anxiety in a positive way, and in general, become a better mother to our two food allergic boys and a better wife to my husband.  I’m a busy body and could not properly function without exercise being a huge part of my daily life!

I often wonder what works for other parents that are caring for anaphylactic children?  How do you manage your anxiety?  If you have food allergies yourself, how do you manage the stress?

During the better part of my 20’s I was an avid Yoga-junky!  For some reason, I got away from regular yoga for about a decade or so.  I have had lots of athletic-related injuries, and not to make an excuse, but it just got away from me.

Last Saturday, my husband took it upon himself to sign me up for a local yoga class online.  He said to me, “You’re going and you’ll really enjoy it.”  I’m so fortunate that my husband listens to me, as I had been complaining for a few weeks about how I needed to get back into yoga but just couldn’t find the time…blah…blah…blah…excuses!

By Jason signing me up for that class I am now completely hooked again!  I love everything about it from “centering,” to working on perfecting my alignment with different poses, focusing, meditating, strengthening, and working on me and my mental health!  I might add, I was literally dripping in sweat for the ENTIRE hour and a half class!  Thank you Tiffany — by the way!  Yoga for me is a nice supplement to all of the other athletic activities I enjoy regularly!  Besides, let’s face it, I’m NOT getting any younger and need to invest in such practices for my physical well-being and my sanity in general!

I understand that exercise and yoga are not for everyone.  (ie. I still play the piano from time to time and I obviously love to cook!)

Whatever you may do to manage your anxiety as a person with food allergies, a caregiver of someone with food allergies or none of the above, it’s important to find what works best for you.  It may be a combination of things.  Please do yourself a favor and take care of yourself so you can be the best you can be for yourself and for your loved ones!

Namaste

~Erika

yoga-2

 

Back to School With Life Threatening Food Allergies

back-to-school

This is an excellent article in our local paper regarding food allergies and how to manage them in schools locally.  Thank you Jillian Fellows for taking the time to interview me for this piece & Petoskey News Review for covering this important topic and helping to gain awareness locally!

http://www.petoskeynews.com/featured-pnr/back-to-school-with-life-threatening-allergies/article_5c9c4c52-6ffa-56ca-85d6-c842cf1d68fe.html

 

Outrage Over Increased Price on Epi-Pens

Check out this video from Good Morning America this morning! I’m outraged and in disbelief!

http://abcnews.go.com/GMA/video/price-increase-epipens-outrage-41565179