Category: Research/News

Update to my “Generic Epi-Pen Post”

A few weeks ago I posted a full article that compared the generic “Adrenaclick Auto Injector” to the Mylan Epi-Pen.  I mentioned that our insurance company automatically filled this generic auto injector in lieu of the mainstream Epi-Pen as of January 1st, 2017 when all of the insurance companies changed their RX coverage plans for the new year.  I discussed in quite length the pros and cons, and noted that I did not have any confidence in this product because I have not had to use it.

As a follow up here is what I have found:

  • It took 6 weeks for me to receive the several “Trainer” pens I ordered online from the website I discussed.  To my dismay, the trainer pen when pushed into the thigh, does not make a “click” sound and the spring in the device does not budge at all.  It didn’t make me feel like this was the reality of how this pen would actually work if I was using this in an emergency situation.
  • I realized the actual auto injectors when dispensed, will not retract the needle once you remove the injector from the thigh after the medicine is administered.  I think this is dangerous and how does one dispose of this?
  • Although I’m not pleased with either of the two points I mentioned above, this pen was still a $0 co-pay and although not easy to use, I’m sure it would work well if need be.

Again, these thoughts are 100% my opinion.  After all of my research and actually trying to practice using this generic Adrenaclick trainer product, we have decided not to let our boys carry these pens.  Additionally, we have not taken them to our son’s school either.  I just don’t feel confident with this product.    This is because it’s so vastly different from Mylan’s Epi-Pen and Auvi-Q, and my concern is that a caregiver of school employee may not know how to properly use this product in an emergency situation, when time is of the essence.

Last week was my boy’s annual food allergy appointment at the University of Michigan where they have been receiving amazing food allergy treatment for the last 6 years!  Our doctor wrote new scripts for each boy and stated on the script “Generic for Mylan 0.3mg Epi-Pen.”  I then filled these scripts at the pharmacy and the cost was only $35.00 for 2 two packs!  The generic Mylan Epi-Pen is actually the same auto injector but significantly less in price.  In addition, I have used Auvi-Q’s Patient Affordability Program to order the new injectors for each of my boys!  This is paid for 100% by Auvi-Q and is a home delivery prescription service.  I can’t say enough wonderful things about this program!  We have always be a HUGE fan of Auvi-Q and we’re thrilled they are back on the market!  As a mother of 2 boys, the Auvi-Q’s are small enough to fit in their pant or jacket pockets.

At the end of the day, every family needs to do what is best for them specifically.  Personally, I don’t feel comfortable carrying a life-saving device that I’m not 120% confident with which is to be used as the first line of defense during an allergic reaction.  I encourage everyone to do their own research and make an educated decision.  The bottom line is that it’s wonderful that we, as food allergy families, now have more choices when it comes to epinephrine.

Have a great weekend!

~Erika

 

Mylan Expands Voluntary Recall of More Epi-Pens & Epi-Pen Jr. in United States

Mylan Pharmaceuticals expanded its’ Epi-Pen Recall over the weekend to include the Epi-Pen Jr. and several more lot numbers below.  Many of us experienced a similar recall with the Auvi-Q Auto Injectors just over one year ago…this is all too familiar and extremely frustrating!  Please click here for the full article on Mylan’s website regarding the recall.

 

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

 

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…

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:

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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

 

 

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

First Friday for Foodies: Small Town Allergy Mom™ Presenting Friday March 4th

I will be presenting this Friday at 11am at Crooked Tree Arts Center in Petoskey, MI.  Small Town Allergy Mom™ will discuss how to prepare your kitchen to entertain guests with food allergies, sensitivities, and intolerances.  I will cover important topics like cross contamination and how to avoid it during food preparations.  Additionally, I will give a brief cooking demonstration on how to prepare my Dairy Free Lasagna Florentine and sampling my famous Vegan Chocolate Cupcakes.  Please join me to support food allergy awareness locally.  More information is available at the Crooked Tree Arts Center link here: https://www.crookedtree.org/event/first-fridays-for-foodies-small-town-allergy-mom-erika-keiswetter/?instance_id=3123

Thank you,

~Erika

Chocolate Vegan Chocolate Cupcakes- By Popular Demand Here is my Recipe Finally!

 

 

 

Blog Under Construction

Food Allergy Awareness Video

This collaboration video Food Allergy Voices by FARE (Food Allergy Research Education) and CBS is eye opening for those who are not affected by food allergies on a daily basis. Please pass along and share this to help us spread food allergy awareness.