CVS Throws Us a Life Preserver

source: http://time.com/money/4481786/how-much-epipen-costs-to-make/

Several months ago, I wrote a post called EpiPens Are for Moms, Too. It was edited and republished by The Mighty (with my permission), because I felt that the information I’d gleaned from my experience trying to buy a EpiPen from a pharmacy was important enough to share with as many people as possible. This week, I have news about this experience that is even more important to share.

Some background: I have a severe, life-threatening allergy to seafood. I’ve reacted with equal intensity to shellfish and regular fish, and that reaction is terrifying. My mouth begins to itch — an early warning sign — and soon afterward, I begin to feel my throat go numb. Once that sensation begins, I know that I have precious few moments before I will begin to have trouble breathing. That’s my cue to get help quickly.

To avoid dying from the accidental ingestion of seafood, I carry an EpiPen. EpiPens are epinephrine auto-injectors meant temporarily to arrest a severe allergic reaction quickly so that the allergic person can get to a hospital. The term “EpiPen” is actually owned by a company called Mylan, which owns the rights to that particular model of epinephrine auto-injector and, this past fall, came under intense public anger for raising the price of these life-saving devices exponentially. You can read more about this price hike and the history of the EpiPen brand on Timeline.

After the frightening allergic reaction I had to fish oil in a chewable Vitamin C tablet in late 2015, which I wrote about in my original post, I went to my allergist for a refill of my prescription for an epinephrine auto-injector. Though I was careful to get a prescription that would allow me to choose a cheaper, generic auto-injector instead of the Mylan brand EpiPen, I had a very hard time getting the pharmacy to fill the prescription for me. I wrote in September about how the pharmacist first gave me the Mylan brand without asking, charging me $280, then hemmed and hawed about the existence of a generic, then claimed my doctor wouldn’t prescribe a generic and, finally, after I stood my ground, suddenly remembered a coupon from Mylan’s web site that would allow me to get the name brand for free.

It was a maddening experience to have all alone in a pharmacy with no one but myself to keep in check. If I’d had several children with me, I can only imagine that my patience for waiting might have given out long before the pharmacist “remembered” the Mylan coupon.

Yesterday, though, something interesting happened. Continue Reading…

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Huddle Up

winter-1Every day, there’s something new happening that scares me.

In fact, every day, there are multiple things — here in the US, and other places in the world. It feels to me like we are balanced on a saucer held on the index finger of someone walking barefoot across a sea of marbles, and — moment by moment — people are plummeting over the edge. I wake up from my spot nearer to the middle of that saucer than 90% of the people on this planet, and I look at the news and try to decide where I will throw my tiny threads of possibility today.

It feels desperate. On the worst days, it feels ridiculous.

As this year ends, I am reminded of the years that my friends and family made contributions to causes that would likely never, ever affect them. Though I tried not to be a broken record, I did occasionally reach out to friends and family via social media and other means to support the charities working on research, advocacy and support for the conditions with which my daughter suffered. When her primary diagnosis was eosinophilic esophagitis, I asked for support for APFED, The American Partnership for Eosinophilic Disorders. After she had her second cardiac surgery, we suggested people make donations to Mended Little Hearts. These were good causes — they are good causes, and I’ll continue to support them even though my daughter’s health is no longer affected by these conditions — but the people we asked to contribute or share stories or raise awareness were likely largely oblivious to their existence before my daughter’s diagnosis awakened them.

In the last few weeks, the pitched voices of a number of needs in the wider world and in my community seem to have amplified. Part of that is due to #GivingTuesday, a campaign to encourage charitable giving after the materialistic trifecta of Black Friday, Small Business Saturday, and Cyber Monday. Part of the onslaught of need has also come out of the recent US presidential election, which has given rise to a level of societal panic I can’t remember seeing ever before in my adult life. Causes about which I care deeply — civil rights, women’s health, the social safety net, immigration and international diplomacy among others — seem to need support more than ever. I find my personal politics pinpointed perfectly as my friends add me to Facebook groups daily, my email inbox fills with requests, and every news story seems to offer me an action item.

This holiday season, there are so many bigger needs than those that affect my family. This holiday season, the needs affect my whole world.

I’m doing a few things differently this season, and while I don’t dare tell anyone reading this that my plan should be theirs, I’m finding it useful to think about what I can do to help in three ways:

  1. Actions that help the world
  2. Actions that help my community
  3. Actions that help my family

Continue Reading…

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6 Things Not to Say to a Family on a Medically Restrictive Diet

talkingBetween my daughter Sammi’s birth and her ninth birthday, she spent nearly all of her life on some kind of medically-restrictive diet. Whether it was being forbidden to eat grains as a baby, following an acid-free diet as a refluxing toddler, using the six-food-elimination diet to uncover the cause of her (incorrectly-diagnosed) eosinophilic esophagitis as a little girl, or choking down the unpleasant fat-free food that kept her safe from chylothorax after her cardiac surgery, we often had to define what our whole family ate by the things that Sammi had to avoid.

During all those years, I heard a number of unhelpful comments about what I fed my child, ranging from the well-meaning but insensitive to the downright offensive. If someone in your world is eating a diet that their doctor has prescribed, the following comments should never, ever come out of your mouth. Continue Reading…

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Public School, Major Surgery, and Careful Planning

Swallow, My Sunshine: Teeter TotterWe knew about our daughter Sammi’s impending major cardiac surgery five months in advance. That gave us plenty of time to research, plan, discuss, and codify our plan for her recovery as it related to school. Not everyone is lucky enough to have this much time to prepare, and so I hope the information below can be helpful to someone else trying to put together a plan on shorter notice. Even if you have enough time to prepare, this checklist can help you ensure that you’ve thought of all the things that might affect your child’s recovery when s/he returns to school.

504 Plan

The very first step we took when preparing for our daughter’s surgery was to inquire with the school district about getting a 504 Plan. Shorthand for “Section 504 of the Rehabilitation Act of 1973,” a 504 Plan makes official any accommodations a child needs in order to participate in normal classroom activities. In the state of Illinois, where we live, the board of education has provided an excellent, comprehensive article about how to apply Section 504 to shorter-term, temporary conditions (though the law also applies to longer-term and permanent disabilities). Creating a 504 Plan forces the school to work with you to accommodate your child’s health needs in a way that gives them the best possible access to their classroom and school activities.

Because we had been through the process of developing a 504 Plan before to accommodate Sammi’s food restrictions, this was relatively straightforward for us, but we also knew the importance of getting the information we put into writing in this plan into the hands of every teacher who would encounter our daughter in the course of her school day. In the end, we decided together with the school to have a meeting that included her classroom teacher, the district health coordinator, the school health clerk, the school social worker, and the school principal, as well as my husband and I. It gave us the opportunity to explain the surgery in detail to the whole team in person, allow them to ask questions, and to brainstorm accommodations together.

Schoolwork

Sammi was going to be missing, at minimum, three weeks of school. Though she was only in third grade at the time, we wanted to be sure that she didn’t fall so far behind in foundational subjects like math that she couldn’t easily catch up. We also knew that complications could occur that would keep her out of school longer than we anticipated, and so we wanted to be prepared for that.

Once again, being aware of the law in our home state was useful. In Illinois, if a student’s doctor determines that the student must be out of school for at least ten days, the district can be reimbursed by the state for providing tutoring services either at home or in the hospital. We were able to get our daughter’s surgeon to sign paperwork affirming that projected missed school before the surgery, and therefore we were also able to have the district find and hire a tutor in advance. Having the extra notice beforehand even allowed them to look for a tutor who spoke Spanish, since Sammi was enrolled in a Spanish immersion classroom.

Safety

We expected Sammi to return to school with two large incisions healing on her back, one across each shoulder blade. Under those incisions, scar tissue between her ribs would be healing slowly. She would not be allowed to carry a backpack, reach her arms up above her head, or move very quickly. Being jostled hard would likely be very painful, as even deep breaths would feel different to her with both sides of her ribs healing. In short: there would be many opportunities during the course of a normal school day for her to get hurt.

Working with the school health clerk, the principal, and her teacher, we began by developing a plan for the beginning and end of the day. In the morning, Sammi would arrive at school just before the bell rang that gathered students from the playground to line up near the door, and instead of waiting outside, would bring a friend to sit in the school office with her until the halls cleared. The reverse would happen at the end of the day, avoiding crowded hallways. During the school day, movements between classes would occur with friends flanking her on either side.

Activity Restriction

Sammi would not be allowed to return fully to her normal activities for at least six weeks after the surgery. That meant there would be no Physical Education class and no outdoor recess. The school’s initial suggestion that she simply sit on the sidelines for those activities was not an acceptable solution for us; we didn’t want her spending an hour a day watching her friends have fun while she sat and watched. Instead, we came up with a list of alternatives and a schedule for her to follow:

  • Reading to the kindergarten class
  • Helping tidy and organize the art classroom (the art teacher was a favorite)
  • Playing math and literacy games in the library
  • Helping me when I volunteered in the school bookstore

Each day, she picked a different classmate to join her during these twice-daily activity times.

Emotional Support

We knew that Sammi would feel overwhelmed, sad, angry, or simply frustrated at times. We also knew that her classmates — who had been together as an insular group for four years — would have questions, worries, and big feelings of their own before and after she returned to school. Including several emotional support components in the 504 Plan helped us set these expectations early on.

The first day of school following her surgery, the district health coordinator and the school social worker visited her classroom and told the students there about what had happened. In simple terms, they explained the surgery and told the students that she was doing well. They worked with the class to make cards and offered any students who needed it the opportunity to process the information privately with the social worker. Just before Sammi returned to school, they met with the class again to discuss her restrictions, how she’d likely feel, and to let the students ask more questions.

The social worker also checked in with Sammi several times once she returned to school and left her with an open invitation to visit her anytime.

Peace of Mind

In the end, though the highest priority for us was to keep Sammi safe, it was also important for us to feel proactive about the time after her surgery. There was nothing we could do for her during the surgery, and little we could do for her in the hospital. Once she was home, we would have to prepare her for her return to school, and we wanted to know that we could give her answers confidently about what it would be like for her there. That was very valuable for us in the months we spent preparing.

If you need help developing a 504 Plan for your child, here are some resources:

 

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Not Her Heart

heartWe entered the children’s hospital on a dark December evening. We didn’t bring a child.

Up the escalator to the lobby, to the registration desk for our badges, we made our way through the mazes of floors and elevators until we reached a place that looked like nothing we’d ever seen before: a carpeted hallway, two small couches, and an empty coffee table outside a closed door with no window.

We were not visiting the doctor in an examining room, we learned. There would be no paper-covered table, no swiveling chair, no cheerful posters. We were visiting the doctor in his office itself.

The door swung open, and he shook our hands. “I remember you guys,” he said, smiling. “It’s nice to see you again.” Continue Reading…

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