Advocate Becomes the Patient: My Diagnosis of MS

Food allergy advocacy has been a part of my life for 11 years. In those 11 years, I’ve talked a lot about RESILIENCE, the capacity to recover quickly from difficulties or exhibit a type of toughness. My son and I have spoke a lot about this word as he struggles with many health challenges: food allergies, asthma, seasonal allergies, acid reflux and polymorphic light eruption. One of the ways that I taught him to be fearless in the face of adversity was to say, “Everyone has something.”

While my son may have experienced a heavier load than most in his short life, it’s true we all struggle with something. Some people have physical or mental health challenges, while others struggle with not being athletically or academically inclined, etc. The list of what one can deal with can be quite lengthy.

Just like you, challenges have not been foreign to my life. I’ve dealt with an array of struggles like infertility, multiple miscarriages and always by my son’s side helping him to brave his health issues.

Everyone has something.

My new something is Relapsing – Remitting Multiple Sclerosis (MS).

After struggling with a variety of more severe symptoms for six weeks, I was finally diagnosed with MS on February 13, 2017.

As much as it was a shock to my husband and me, it really wasn’t. We quickly began to piece together the last couple years of my life and it all began to make sense with symptoms ebbing and flowing during different times.

My initial inclination was to retreat; closing myself off for what has been well over five weeks being introspective and defining what this means for me and my family. The diagnosis of MS is not a death sentence, nor does it mean being wheelchair bound. Thankfully, I’m considered to be a mild case where I will live with the disease and manage day-to-day symptoms and limitations.

I’ve started on injections of Copaxone® which is not an MS cure, as there is no cure. The medication does not manage any MS symptoms rather its purpose is to hopefully minimize the number of MS relapses that could prove to be debilitating. In addition, I’ve started with a personal trainer to strengthen my body and address balance issues. Life is a little slower these days, as I begin to understand what my energy limitations are and how much is too much ensuring that I don’t add to my fatigue. I have good days and bad days, but I had those whether I had MS or not, so I’d say I’m doing very well.

I can’t thank my close family members and friends enough who have been of great support over the last 12 weeks. The calls, texts, cards and emails have truly buoyed my spirits and made me realize that this too is just another bump in the road of life.

Most of all, I’d like to thank my husband Demetrios. This May will be our 17-year anniversary. Through those years we have celebrated too many happy times to count and faced challenges side-by-side buoying one another along the way. While we are often blindsided by life’s challenges that take our breath away, that cause anxiety thinking about the unknown, one thing has always been unwavering – our love, commitment and support for one another. To quote Demetrios, “This is our life together, nothing will ever change it.”

Last, one of the largest decisions in all of this was…who will I tell? Do I keep this all to myself? How far out do I tell of my family and friends? Recently, I had a person with MS follow me on Twitter. In her profile, she listed herself as an MS Warrior since 2012. I sat with that phrase ‘MS Warrior’ for a few days and I even bothered to look up the word ‘warrior’ in the dictionary to help define what it means to me, if anything.

A warrior is a brave and experienced fighter.

I am a brave and experienced fighter of many things…

Infertility Warrior
Miscarriage Warrior
Food Allergy Warrior

And now…

I am an MS Warrior.

EpiPen Hearing Yields High Drama No Substance

Mylan’s CEO Heather Bresch and a Food and Drug Administration deputy director Doug Throckmorton testified before the House Oversight and Government Reform Committee on Wednesday, September 22, 2016, regarding the high price of the EpiPen®. The questions posed and answers provided were nothing short of high drama with no substance.

Since Mylan acquired the EpiPen® in 2007, the product’s price has increased more than 500%. Personally, I can recall the product being as high as $730 and currently it is riding at approximately $608.

It is apparent that Bresch believes the company has taken reasonable steps to relieve the financial burden from consumers by replacing the $100 coupon with a $300 coupon and announcing the upcoming launch of a generic which will retail for approximately $300. However, refusal to simply lower the price of the EpiPen® has consumers feeling betrayed and fuels the government’s perception that Mylan is playing the ultimate shell game. Plus, let’s not forget the only reason that the coupon was upped to $300 and the unprecedented (Bresch’s word) launch of the generic was due to consumer and finally government outcry with Mylan’s hand caught in the proverbial cookie jar.

Throckmorton was raked over the coals because the FDA approval process is oppressively burdensome. In addition, he was unable to report how many FDA applications were filed for competitors to the EpiPen® because it would go against the FDA’s rules.

While listening to the EpiPen® hearing, I started to think about the corporate value lessons learned during the Hobby Lobby case a couple of years ago. Here’s a sentence from Justice Samuel Alito’s opinion in the case that can easily apply to the EpiPen soap opera:

EpiPen Hearing Yields High Drama No Substance

As the bad and the ugly continued to unfold during the hearing, or not unfold for answers not provided, I couldn’t help but also think about the good that Mylan has done with regard to disease awareness, stock epinephrine in schools as well as other places such as zoos, museums, amusement parks, etc. However, any of the good that resulted from Mylan’s efforts is now overshadowed by the ugly. New questions arise such as, Was there even a glimmer of sincerity in those actions? Did Mylan really want to create more investor value and line executive pockets on the backs of food allergic children? Outraged congressional representatives used phrases like a rope-a-dope strategy, an unfair monopoly, a shell game, a sham, something smells fishy, numbers don’t add up, charts that seem dumbed down, and a simple but corrupt business model to describe their understanding of Mylan’s actions.

Just because the government is looking into Mylan’s practices, doesn’t mean our work is over. Continue to communicate with your legislators via calls, emails and letters and share your prescription drug pricing woes until change actually happens!

To truly understand the lack of answers provided, along with some great one liners delivered by government officials, view the full event below in its entirety.

Stay tuned…Heather Bresch and Doug Throckmorton are due to disclose more information in 10 days.

This drama is far from over.

EpiPen® hold time is now 3 seconds

The EpiPen® hold time is now 3 seconds and there are other administration guidelines that the FDA has changed due to lacerations and injuries related to usage. There are three points of change listed below; however, you can read the FDAs document in its entirety:

  1. Restrict Patient’s Leg, limit movement during epinephrine administration

    EpiPen® hold time is now 3 seconds

    Image courtesy of Mylan

    Lacerations, bent needles and embedded needles have been reported when epinephrine has been injected into the thigh of a young child that is moving, kicking or uncooperative during administration. To minimize the risk of an injection-related injury it is advised that caregivers hold the child’s leg firmly in place and limit movement prior to and during the injection.

  2. EpiPen® hold time is now 3 seconds

    The EpiPen auto-injector should be held firmly in place for 3 seconds prior to removal.

  3. Serious Infections at the Injection Site

    Rare cases of serious skin and soft tissue infections, including necrotizing fasciitis and myonecrosis caused by Clostridia (gas gangrene), have been reported at the injection site following epinephrine injection for anaphylaxis. Advise patients to seek medical care if they develop signs or symptoms of infection, such as persistent redness, warmth, swelling, or tenderness, at the epinephrine injection site

This information came on the heals of the Minnesota Children’s Health Network finishing a revamp of their Anaphylaxis Action Plan, it was an honor to serve on the committee that examined and enhanced this Plan. The FDAs new administration guidelines will be included in the revamped Anaphylaxis Action Plan that is set to release just in time for the 2016-2017 school year.

If you’re looking for more information, be sure to: check out Mylan’s EpiPen® website, read the box insert of a newly filled EpiPen® prescription, contact a Mylan Customer Relations Representative at 800.395.3376 or speak with your physician.

PLEASE SHARE THIS IMPORTANT LIFE SAVING INFORMATION WITH OTHERS!!!

Food Allergy and Inclusion

Kristin Beltaos interviewed by Katja Rowell, M.D. for Extreme Picky Eating Help

Food Allergy and Inclusion: Introduction by Katja Rowell M.D.: Children may face eating challenges for various reasons. Children with extreme picky eating tend to experience higher levels of anxiety, around food and in general. Perhaps the most anxiety-provoking feeding challenge that parents face is life-threatening food allergies. Some children with extreme picky eating also struggle with food allergies, which can complicate the picture even further. Kristin Beltaos has made it her mission to help parents and children not just be safer and healthier, but thrive. We were intrigued and impressed with Kristin Beltaos’ work with parents, children, and schools (A Gift of Miles). She has graciously agreed to share some wisdom in our first guest blog post.

1. Food Allergy and Inclusion – Spotlight of Difference intrigues us. Can you tell us more?

First off Katja and Jenny, thank you for the opportunity to communicate with you and your followers.

food allergy and inclusionUsually when you think of placing a spotlight on a child you think of something positive, i.e., accomplishing an awesome grade, playing a great sport game, writing a wonderful paper or doing well in a recital. These are all great ways to shine a positive spotlight on a child.

It’s fascinating how when we are confronted with a challenging situation, such as creating a safe environment for a food allergic child, our initial instinct is to determine how a child will adapt to our environment, rather than how the situation can be modified so that it’s safe for everyone. When we only address the individual child it will almost always create a Spotlight of DifferenceTM.

In our efforts to create safe environments for children with food allergies, parents and schools alike often shine an unnecessary Spotlight of Difference TM on these children that I believe is a catalyst for anxiety in food allergic children as well as food allergy teasing and bullying. We need to understand that safety does not always equal separateness and vice versa. I believe it’s our inability to view the picture creatively and holistically that causes us to go the easy route and shine an unnecessary Spotlight of Difference TM.

When I use this in my training, I have attendees actually work through real life examples on how to create more inclusiveness and diminish the Spotlight of Difference TM. It’s really stirring to see people get creative and excited about how to make life for a food allergic child better. I think so often we don’t like what is happening, like an allergy table, but we don’t take the time to think about how we can do it differently.

2. Food Allergy and Inclusion – How does this relate not just to food allergies, but also children with extreme picky eating, and even beyond food, to other differences?

I think we shine a spotlight more often than we think. Let’s examine when treats are used for incentives, rewards and celebrations.

Food Allergy and InclusionI always like to share about the first year when my youngest son was old enough to eat Halloween candy. My youngest son sat down to Twix®, Milky Way® and Hershey® candy bars while my child that has food allergies had in front of him Starburst®, DOTS® and Smarties®. You cannot look at these treats and equate them as being in the same category. You can’t “sex up” the non-chocolate treats, there’s just no comparison, unless of course you aren’t a chocolate fan.

My point is, you wouldn’t have your child’s three friends over and provide three of the children with delicious chocolate and one child with the other variety. How do we solve this dilemma? If you’re having a school-wide celebration, then that means finding a treat that is safe for all based upon all the dietary restrictions whether that be food allergy, food intolerance, diabetes, Celiac disease, autism, extreme picky eating, ADD, ADHD, etc. If you’re having a classroom celebration then that means finding a safe treat based upon the dietary restrictions within each classroom.

Spotlights don’t always have to be related to food. Each child may learn to read or understand math at a different pace. Stickers, colors, or Popsicle sticks may be used to track progress. Peers will know what level you are at in reading based upon the tracking system utilized. Children may be called out in the hall, to at a separate table or moved to a different classroom for assistance. If a child is learning at a slower pace, he/she may feel embarrassed. I don’t have the answer to this type of spotlight, but as you can see, often times we probably don’t even know that we’re shining a spotlight on a child.

While it may require additional planning, many schools have successfully found ways to socialize, celebrate, incentivize, reward, learn and craft without food or within restrictions surrounding food. It simply takes a little extra effort, and more importantly; just imagine the difference you make in a child’s life that is dealing with a challenge.

To read the rest of the interview about Food Allergy and Inclusion, click to enter the Extreme Picky Eating Help website.

Food Allergies Are More Than An Awkward Moment

Food Allergies Are More Than An Awkward Moment or Two

Food allergies are more than an awkward moment, yet when you are a parent to a child with a food allergy, or you are the person who has the food allergy…most of the time you feel like you’re asking for special treatment rather than a safety requirement. We’ve all seen the eye rolls, the teasing, the telling glances and even some “friends and family” that are embarrassed of our constant questions. I have always said, “Who would ever choose to live this way?”

John Espinosa messaged me over LinkedIn and shared with me his recent food allergy experience that opened his eyes and caused him to find his voice! I’d like to share his post with you because as I advocate for my son and for other children that have food allergies I realized John’s message needs to be heard LOUD AND CLEAR. He exemplifies everything that we want our kiddos to be…to be confident enough to know who they are and what they need! We want our children to believe and communicate his same messages: “My life should be worth more to you than an awkward moment or two.” and “I’m empowering those who are peer pressured towards death to fight for their lives.”

Join me in READING his story and be sure to SHARE HIS BRAVENESS with others:

“Friday Feburary 26th was a wake up call. A white chocolate chip macadamia nut (… really cashew) cookie landed me square in the hospital. That Friday, I learned to be adamant when it comes to food allergies. Show me an ingredient list. Call out friends that snicker or roll their eyes when I ask the waiter to clarify whether kitchen equipment is scrubbed well between meals. Shut down people who bother me about how my epipens make my pants look clunky.

I AM DONE feeling like an “inconvenience. Continue reading

Self Carry Epinephrine: When Can My Child Carry?

Lots of questions arise when a child should self carry epinephrine.

As a child grows in independence when should a child start to self carry epinephrine? Image courtesy of Photobucket

“When should a child self carry epinephrine?” I’m asked this question a lot. First of all, it’s a decision between you and your spouse, your child and your allergist or pediatrician. It’s important to remember that we need to meet our child where he/she is developmentally and from a maturity standpoint. School staff often say to me, “We have a kindergartener that is able to self carry epinephrine, why not this child?” Ok, that’s fine if that is what the parents, physician and child have decided. However, just as 504 accommodations are not cookie cutter, meaning what works for one child may not work for another child, either is self carrying epinephrine.

When your child is ready to take on a more active role in his/her food allergy management, consider reading these posts. From the American Academy of Allergy Asthma and Immunology: age appropriateness for self-administering epinephrine and when a child assumes responsibility for self-treatment of anaphylaxis.

I haven’t come across anything written on when to transition your child to self carry epinephrine and so I decided to share with you how I have started to navigate this path. Hopefully it will give you some ideas on how to handle your child’s growing independence.

When is my child ready to self carry epinephrine?

As with many food allergic children our son is an old soul who is mature beyond his years. We were able to explain complex information, at a very young age, and knew it was understood. As a result, he became well-organized in his daily routines and knows how to take care of himself and manage his food allergies. Continue reading

Book Review: My Food Allergies

Editor’s Note

It was truly an honor to have Amber DeVore, R.D. contact me to review her new book, My Food Allergies. In a straightforward manner, Amber recounts the story of her son’s first anaphylactic reaction, allowing readers to learn and have a better understanding about food allergies and anaphylaxis. The story, combined with David Robinson’s cute illustrations, creates an excellent resource to educate children about the risks and necessary care for someone with a food allergy.

Review of My Food Allergies

 My Food Allergies by Amber Devore R.D. and Illustrations by David Robinson

My Food Allergies by Amber Devore R.D. and Illustrations by David Robinson

The book has two main characters, a young boy named Kieran and his mom. After a hard day of playing baseball, Kieran comes home to eat a snack of yogurt with granola. He unfortunately has an allergic reaction, his face swells and breaks out in hives. His mom calls 911 and he is taken to the hospital via ambulance. The doctor at the hospital determines that he is allergic to nuts, which was in the granola.

Once the diagnosis is determined, the family gathers the knowledge on how to stay safe: learns what foods to avoid, how to read ingredient and manufacturing labels, carries epinephrine wherever they go, does not share food, and how to safely and positively participate in life’s activities where food is served, i.e., bring your own safe, nut-free snacks and treats.

What I found to be the most endearing aspect of this book is the interactive guide at the end. The questions posed, encourage the reader to think about and discuss how they stay safe and navigate food allergies in their own life. By including a discussion, a dialogue is created between a child and the reader, most likely a parent, family member or caregiver. The dialogue create a teaching moment where the child learns how to keep safe, care for him/herself, participate positively in his/her life, and finally, provides the opportunity for a child to discuss his/her feelings regarding having a food allergy.

My Food Allergies is an excellent selection to teach, to share and just plain enjoy!

You can find My Food Allergies on Amazon.

Why can’t I have a Cupcake? Book Review

Editor’s Notes:
I was so happy that Betsy Childs contacted me to review her new book about food intolerances, Why can’t I have a Cupcake? Her simple, yet meaningful, story along with Dan Olson’s illustrations was a great hit with my sons.

When you have a food allergy, it is required that you have two doses of epinephrine in your possession as a second dose may need administered five minutes after the first dose.

Review of Why can’t I have a Cupcake?

My son is attending a birthday party this weekend…a place where tasty treats are always in abundance along with the token slice of “za” (pizza). These social situations are sometimes challenging for those dealing with food allergies, celiac disease or intolerances as assimilation is so important. No matter the challenge, we must teach our children that the celebration is the time we spend together having fun, and much more important than any food.

Why can't I have a Cupcake?

Why can’t I have a Cupcake? by Betsy Childs and Illustrations by Dan Olson

In this thoughtful book, Rory, a six-year-old boy, was excited to be going to his friend Poppy’s birthday party where they will have delicious cupcakes. Rory L-O-V-E-S cupcakes, but he is gluten intolerant. He remembers having a stomach ache after eating foods like cupcakes and pancakes.

Rory’s mother dropped him off at the party, hands him his crispy bar and he is off to have some fun! Not only did Rory have an enjoyable time participating in the fun activity and watching Poppy open her birthday presents, he learned that he was not the only one bringing his own treat or an item to keep safe. Celia can’t have peanuts so she came prepared with a tuna sandwich, in case PB & J sandwiches were served. Mason brought an EpiPen® because he’s allergic to bee stings. Lewis has a popsicle because he can’t have ice cream, he’s allergic to dairy. Continue reading

What To Do When Your 504 Plan is Violated

We’re here to talk about the difficult challenge of what to do when your 504 plan is violated. Even after all of the best food allergy management planning, expect to have a snag or two. Most issues are misunderstandings or miscommunications and are easily fixed by an email, telephone call or short meeting with the teacher, principal and/or 504 coordinator. Remember to stay the collaborative and creative parent you are, and partner to resolve these types of issues.

On the other hand, when your child’s specified accommodation is not received on a consistent and conscientious basis, then a more direct and formal approach is necessary. What might a violation look like? Perhaps your teacher is having your child sit out in the hall during snack time. Maybe unsafe curriculum projects are continuously being used in the classroom without notice or accommodation. It could be that a student, teacher or school staff member is repeatedly harassing your child about his/her food allergies.

No matter what has transpired in a 504 violation, it’s a terrifying and angering experience simply because your child is at his/her most vulnerable outside of your care. In addition, it is always our hope that adults will behave as mature and responsible individuals, and when that doesn’t happen, it creates a mistrust that is not easily rebuilt.

Top 10 Tips for What to Do When Your 504 Plan is Violated Continue reading

Food Allergy School and What Not To Do

Where back to discuss Part 2 in the series of how to prepare for school with a food allergy, this entry’s topic is Food Allergy School and What Not To Do. In case you missed it, check out the first post Prepare for School with a Food Allergy, Part 1 which has my Top 10 Tips to prepare for school with a food allergy. In this entry, I’ll share my Top 5 Tips of what not to do when preparing for school. Don’t forget, there’s one more in this series to come, What To Do When Your 504 Plan Is Violated, Part 3.

Food Allergy School and What Not To Do

1.  Don’t Sign A Release of Medical Records

food allergy school and what not to do - do not sign a release of medical records

Never provide a release of medical records for your school.

When you think about your child’s food allergy, school and what not to do it’s very important to not feel pressured to make quick, uncomfortable decisions. Medical Information is extremely private and not meant for public consumption. Never sign a release of medical records to your school; there’s nothing worse than school staff or even a school nurse or health paraprofessional interpreting your physician’s diagnosis and notes and drawing conclusions regarding your child’s medical information. A letter from your allergist is sufficient. See the first in the series entitled, Preparing for School with a Food Allergy, Part 1. Continue reading