Category: Advocacy

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

 

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…

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

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

Food Allergy Letter Home to Classmate’s Parents Before School Starts

I have had a few recent requests for my “Letter Home to Classmate’s Parents.”  I recommend you edit this template to meet you child’s needs best.  Also, I recommend sending it to the principal/officer manager for editing and then have the final letter sent home to the parents of the students in your child’s class.  This letter should be from your school principal, not the parent of the food-allergic child.  Also, I don’t think it is a good idea to name your child in the letter.  Even though my oldest son has life-threatening food allergies to DAIRY, EGGS, PEANUTS, & TREE NUTS it wouldn’t be fair to the other students and too hard to enforce a classroom free of all of the above.  Nut oil lingers on surfaces and therefore a nut-free classroom is the best option.  We have taught our boys to be responsible for their food allergies and to always be diligent about proper hand washing, reading labels, etc.

Oh, and keep the letter to one front page…if it is too long and wordy parents won’t read it!  Believe me, some parents never read this unfortunately.

Please let me know if you have any questions about this letter.

~Erika

Letter Template:

August __, 2016

Dear (School Name) Second Grade Parents,

Your child has a classmate this year that has life-threatening anaphylactic food allergies to: all dairy, peanuts, tree nuts and eggs.  We want to inform you a little about food allergies to ensure a safe and healthy school year for everyone.

Over 14 million Americans have food allergies which affects 1 in every 13 children (under age 18) or roughly 2 students in every U.S. classroom! Allergic reactions can be life-threatening, and in rare cases deadly. While emergency treatment is available for allergic reactions, there is no cure yet. The only treatment for food allergies is strict avoidance of allergens. Sometimes a small amount of allergen can cause a deadly reaction.

Benadryl and an Epi-Pen will be kept in the second grade classroom for immediate access as well as the school office if your child’s classmate should have an allergic reaction.

Please do not send any peanuts or tree nuts (i.e. almonds, cashews, pistachios, walnuts, etc.), peanut butter or foods containing peanut/tree nuts or peanut butter to be eaten as snacks or for lunch in the classroom.  Healthy alternatives are: Soynut butter, Sun Butter, or Biscotti spread.  Additionally, please check all food labels for the listing of peanuts or various tree nuts, especially on crackers, cookies, and dessert treats.

I would ask if you’re bringing in food for a party or special event that might not be allergen-free, please let (Insert Teacher’s Name) know in advance so that a safe alternative option can be provided for the classmate with food allergies. (In particular, because homemade baked goods are so likely to contain traces of allergens from previous baking, they’re not safe options for children with food allergies even if they don’t contain ingredients with milk, nuts, and eggs.)

I would also ask that you discuss food allergies with your child.  Please ask them not to share or trade food with any of their second grade classmates during lunch time. Please also assure your child that children with food allergies are no different than other children.  They can do everything anyone else can.

Finally, if your child eats foods containing dairy, peanuts, tree nuts, or eggs for breakfast, please ask them to wash their hands and brush their teeth before coming to school.

Thank you in advance for your kindness and consideration. If you have any questions, please feel free to contact me at _______________________.

Best regards,

Principal ___________________

 

 

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!