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Thursday, August 25, 2016

What's with the price hike for Epi Pens??!!

Like many people, I am in shock about the price of Epi Pens. In our family of 5,  three of us need Epi Pens.

I am allergic to seafood.

Son #2 has a tree nut allergy (not to be confused with peanuts - which are NOT a nut - but from the 'legume family'.)

 Son #1 had anaphylaxis (a SEVERE allergic reaction) after getting his weekly allergy shot. The scary thing is that we don't know WHAT part of his allergy serum caused the reaction. 

I can avoid seafood, and Son #2 can avoid tree nuts, but Son #1 doesn't know what he needs to avoid - it could have been anything in his allergy serum.

So we need 3 sets of Epi Pen twin packs.  If we had a high deductible health insurance (thankfully we don't) it would cost us $1800. I'm not sure how much it will cost us, guess I'll find out when I go to the pharmacy.

You may have seen news articles about the crazy price increase for Epi Pens. In 2009,  a twin pack was about $100, today the exact same thing is $600. 3 senators are outraged, including Senator Amy Klobucher.  She feels that Mylan (the company that makes Epi Pens) is unfairly raising prices in America. She says the Epi Pens cost hundreds of dollars less in Canada and other countries. 

You can watch her interview on CNN. She is also the mother of a 21 year old daughter who carries an Epi Pen, so she knows the danger of allergies.  

The frustrating thing that news outlets are showing is that the CEO of Mylan, Heather Bresch, is making a LOT of money from this. In the interview on CNBC, she keeps blaming the cost on others (pharmacies, insurance companies, etc.)

But a VERY interesting thing is happening. Each year, as the cost of Epi Pens rose, so did Heather Bresch's salary and perks. A story in the The Washington Post says Bresch made a little over 2 million dollars in 2009, and is now making almost 19 million. 

Let that sink in for a minute. Many people are struggling to pay for Epi  Pens, and she is making almost $19 million dollars per year. I can't even process how much money that is.....

Suddenly, Mylan is expanding their prescription assistance programs (why don't they just drop the price?!) You can see how by scrolling down to the bottom of this CNBC article.  

So, what can you do to be able to pay for your Epi Pens? Allergy & Asthma Network is a great resource. This is their mission statement:

Allergy & Asthma Network Mission

Allergy & Asthma Network is the leading nonprofit organization whose mission is to end the needless death and suffering due to asthma, allergies and related conditions through outreach, education, advocacy and research.

One of their followers on Facebook asked how Allergy & Asthma Network can help. This is their response:

Allergy & Asthma Network Allergy & Asthma Network will speak with you to better understand your plan and the specific options for co-pay cards, prescription assistance or free epi program. Please call 1-800-878-4403 or send an email to speak with us directly.

Our family has also used Needymeds over the years for prescription help. This is their page of companies that have copay assistance for Epi Pen twin packs 

This is the link to copay assistance for Epi Pen Jr Twin Packs    

Okay, rant over. 

PLEASE do not go without your Epi Pen! 

If your doctor has prescribed one, it can save your life. I watched Son #1 have anaphylaxis and I never want to see that again as long as I live. I will never forget how scary and dangerous that was.

Check with the Allergy & Asthma Network, Needymeds or any other co-pay assistance website.

Stay safe!  

Thursday, August 18, 2016


This is how my life looks lately. 

I have had an endless stream of BUSY (read: stressed) weeks. Hubby's rock band concerts (it's just a hobby....), college graduation for Son #1, dinner parties, migraines and then some idiot who hit my car in a parking garage and took off. Yep, true story. 

I'm not the best at handling stress. And just when I think I have one situation under control, something else happens.

It seems to be a vicious cycle. Because stress can trigger an asthma attack. And anyone that has had an asthma attack knows how stressful that can be. And around and around we go.

The weird thing I have noticed is that when I have an asthma attack from stress, my chest gets tight. If I have an attack from another trigger (like cats, someone mowing their lawn, etc) I have a hard cough that won't stop until I use my inhaler. But if it's from stress, my chest gets tight. Gotta love asthma and how unpredictable it can be.

Has anyone found what helps them with stress? Some people use yoga, some do deep breathing, some people watch funny movies (Hello Netflix!)

What works for you?

I need to start with learning to say "NO" to projects. Apparently "NO" is actually a word - who knew??

Share your ideas and let's figure out how to control our stress and our asthma!

Thursday, August 4, 2016

Nut free cases at Baskin Robbins!

This summer has been sooooo hot. Locally, we had almost a month of temperatures above 100 degrees. (I know....first world problems)

So, we picked up Son #1 and Son #2 and went out for ice cream with daughter Kitty. I am not above bribing my kids to spend time with me! I will also take them out to dinner or a movie so I can see them!

My favorite ice cream is Baskin Robbins. However, we always have to be careful because Son #2 is allergic to tree nuts. By the way, tree nuts are NOT the same as peanuts  -  a peanut is from the legume family and is grown underground. So it is not a nut. Fun fact for the day!

The University of Iowa has information for their students to learn the difference between peanuts and tree nuts.   

It might be helpful for some others to read it too!

 Anyway, Son #2 is careful to watch for tree nuts in food. He asked the employee to use a clean scoop and the employee said, "This is a nut free case. This case only has ice cream without nuts. We are not allowed to put an ice cream in here that does have nuts." 

I was shocked! (And happy!) Why doesn't everyone do that?!

Son #2 was getting a sandwich at Subway and saw the cookies in the case by the register. He was going to order a chocolate chip cookie before he noticed there was another cookie in the case that had nuts. That means the WHOLE case is contaminated, and he can't eat ANY cookies in the case. (Proud mom moment....he remembered what I had taught him!)

I wish more places would separate their food that has nuts. I don't think they know that nuts can contaminate the other food.

If you are allergic to a food, you can have a severe allergic reaction (anaphylaxis) with can kill you. Son #1 had anaphylaxis once after allergy shots. It was SO scary. I never want to see that again as long as I live.

So, THANK YOU Baskin Robbins!  For separating your ice cream that has nuts. It may not seem like a big deal to you. But it is to us!

Wednesday, July 27, 2016

Your kids can play Pokemon Go from their hospital bed!

This falls under the category of "What a Great Idea!" and "Thank You From Tired Parents in the Hospital!"

If you haven't heard of Pokemon Go, you must be living under a rock somewhere. Seriously.

 This game has taken the world by storm! Millions of people are using their smart phones to capture Pokemon in real world locations. If you have seen a large crows gathered around at places that don't usually have crowds (the library, police station, etc) and they are all glued to their phones, chances are that they are catching Pokemon.

So, what happens when you are a kid and you are stuck in the hospital? You have someone play Pokemon Go for you!

A group of college students  from BYU (Brigham Young University) created "Go For Good"

(By the way, I am a BYU alumni and I think those students are brilliant!) 

So, what is Go For Good, and how does it work?

 1. Volunteer "trainers" connect with kids via video-conferencing software

2. The software lets kids see what's going on in the outside world

3. The kids tell the trainers where the Pokemon are, and the trainers catch 'em all  (and the child can see it happen in real time)

Fox 13 TV station had a story about a local child in the hospital, who is having volunteer trainers catch Pokemon for him. And here is another story from KSL

What a smart idea! 

Those of you who usually read my blog know that my kids were hospitalized 12 times (2 ICU) when they were younger  - thanks to asthma and pneumonia (and smoke from a forest fire.)

When Son #1 was 7, he was visited in the hospital by the costume character Pikachu. I can still remember that day! (and Son #2 is in college now.....)  Pikcachu gave Son #2 a Pokemon shirt which he wore for YEARS - until it was faded and worn out. I can't tell you how much it means to parents and children stuck in hospitals to have SOMETHING to do while they are in there.

So, now kids can still have fun with Pokemon, but you can have a brother, aunt, dad, etc "be the legs" and "catch 'em all" while your child is in the hospital.

Have fun! And I would love to hear stories if you and your hospitalized child uses this.

With all the attacks, bombing, etc on the news, it's so nice to hear a GOOD story filled with love!

Tuesday, July 19, 2016

Keepin' stuff clean

(Shutterstock image)

One of the things that helps our family control our asthma is cleaning. For those of you who read this regularly, you will know that Hubby and I and all 3 kids have allergies. The 3 kids and I all have asthma. 

There are so many things that can make your asthma worse, or "trigger" or cause an asthma attack.The American Academy of Allergy Asthma and Immunology has a page on their website about common asthma triggers.

Triggers can be different for everyone, and change over time. 

Dust has always been a problem for me. It's so hard to keep things clean and dust free.

We have wood floors, which really helps because you can SEE all the dust and suck it up with the vacuum. Some people hate having wood floors (because you can see dirt, crumbs, etc.) but I LOVE them.

In fact, we live in a historic AKA old house. One of the things I love about my historic house is that is has wood floors. They were covered up with carpet when we bought the house, but Hubby and I tore out the carpet and he refinished the wood floors. 

We seem to breathe easier when we have wood floors and they are kept really clean. 

Some people sweep wood floors, but it seems like it just stirs up the dust into the air. We have a vacuum that allows us to switch the settings so we can vacuum the wood floors and a few areas rugs. 

If you are having a lot of asthma symptoms and can't figure out why, take a look around your house. 

Is it the carpet? Mayo Clinic says that hard flooring (wood floors, tile floors, etc) can be better when you have asthma.  

There are other things in your home that can cause asthma attacks, but today I talked about dust. 

Tune in later for more ideas of things to check for in your home,




Monday, July 11, 2016

Make an anaphylaxis video today (seriously....deadline is today!)

Well......I'm VERY late in posting about this, but better late than never!

Sarah Jessica Parker has a son with severe food allergies, and he experienced anaphylaxis as a young child. Her son is now a teenager, but they learned a lot along the way.

She would like to hear about other families that deal with severe allergies (food, latex, stinging insects, and medication allergies) and anaphylaxis. 

You can make a short 5 minute video and submit it. Winners will get to premier their film in New York City!

The deadline is today, July 11th 2016!!!!

She teemed up with Anaphylaxis for REEL  - get it? Reel as in film reel?

What should you include in your video? In an email from Allergy & Asthma Network, it said:

"What are the challenges you face managing your allergies and avoiding anaphylaxis?"

"How do you overcome those challenges?"

"What do you want other patients and families to know about managing severe allergies?"

Grab your phone and start filming. Share your story.

Help other families. 

Friday, July 8, 2016

It does get better!

(Shutterstock image)

Being a parent is hard. 

Having a chronically ill child (or children) is hard too. 

Some days you think, "Will it ever get better?!"  

I had friends whose kids NEVER seemed to be sick. Or, they would get a "little cold" and sniffle for a week and be done. My kids would get "a little cold", get pneumonia and end up in the hospital.

A coughing kid can wake me out of a dead sleep faster than anything. "Who's coughing?" I yell, as I run from bedroom to bedroom with my heart pounding in my chest. 

That's how it would start at our house. A little cold. A little cough. And then it would go downhill from there.

We did everything right. Washed our hands. Used paper towels to open the door handle in public bathrooms. Washed our hands again as soon as we got home. Got flu shots every year. And we even had the pneumonia vaccine!

Made our home allergy and asthma friendly by tearing out the carpet so we could have the wood floors instead. Vacuuming. Mopping. Washing bedding. Washing curtains. Dusting blinds. Washing  the couch slipcovers.  Changing the furnace filters.

I had a chart on the fridge for each kid's allergy and asthma medicine. Who needs what at what time. We didn't miss a dose. Ever. 

And still nothing helped.

Friends would come over to play with my kids and I if could see a runny nose or hear that child coughing,  I would send them home.  (This is after I already told their parents to PLEASE not send their child over if they were sick. I would tell them a cold to you is pneumonia to us and ANOTHER hospitalization). 

Other parents with healthy kids don't "get it." 

We had 12 hospitalizations for asthma (2 of those were ICU.)

We get it. We get what it's like to know where every pediatrician's office is on our network - so we know where to go for After Hours help (which for us is from 5pm to 10pm.) After that, we would head to the ER.

We get middle of the night trips to the Emergency Department.
We get prescriptions, doctor bills, hospital bills, x-ray bills, lack of sleep, and crying. Lots and lots of crying. (From me....not from the kids!)

It hurts when my child can't breathe, and I can't fix it. Many times, I was in over my head. That's when I let the hospital take over. That's why I have insurance!

I let other people help too. I'll never forget a friend who said, "Is there anything you need?" I told her I was craving a hot, gooey chocolate chip cookie. She brought a whole plate to the hospital - still warm!

Friends took my other kids to and from school, and let them stay and play after school. Neighbors picked up groceries when my fridge was bare after a hospital stay. 

Friends brought "goody bags" to the hospital for Hubby and I. Full of magazines, crackers, gum, juice and most of all - chocolate!

It will get better. Kids get older. They can tell you when they hurt/can't breathe/don't feel well. You fine-tune their medications and learn when to increase their controller meds/start them on an oral steroid/ head to the After Hours vs the Emergency Department.

You learn to sleep when you can.  

Son # 1 and Son #2 are in college now and rarely have problems with their asthma. Daughter Kitty is in high school and still has her days, but hasn't been in the ER or hospital for a LONG time. 

It does get better. 

Take care of yourself. Ask for help. Watch a funny movie. Read up about asthma! Allergy & Asthma Network is a great places for families to learn more.

Keep your chin up! You can do this!