Allergic to the common cold?!?!- Part 3

In my last post (There’s something itchy going on…. – Part 2) about my son, DR’s mysterious hive reactions, we had finally got him an appointment to see someone at his allergist’s office.  It was Thursday, July 21st.  His appointment was later in the day, so I spent the morning trying to treat DR’s fourth outbreak of hives in that 10-day period, monitor for other signs of a serious reaction, and manage his paradoxical  side effects from the antihistamines I had given him.

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Doctor appointments are no fun unless you dress as a superhero.

By the time we got to the allergist’s office that morning he only had hives left on his legs.  We were brought back to a room quickly.  Within 5 minutes, in walked who I thought was the other doctor in the practice.  (Quick side noted:  days later I found out that this man was a nurse practitioner at the practice.  I normally do not have preference of being seen by an nurse practitioner or physician’s assistant, but with this particular office, I have heard some awful things about this nurse practitioner.  So when I had made the appointment, I had asked not to be seen by him, and was told we would be seen by the other doctor.) He began asking questions, not about his reactions, but about whether he had been exposed to a cold.  We did have our share of the common cold spread throughout our house, but that had been almost a month before.  I then tried to turn the topic back on our current issue of hives.  I told him everything that had happened those 10 days before the appointment.  I showed him pictures.  Unfortunately, he was so focused on this idea that my son was just having a reaction to the common cold, that he didn’t even do a full work-up.  We left with the diagnosis of a viral reaction, and directions to give him tylenol or ibuprofen if he developed a fever.  I was very confused, and friends, family, and school officials could not believe it.

Since it was Thursday, we had dinner at my mother-in-law’s house like we do every week.  I had given DR another dose of his antihistamine.  As usual, the kids would run around the house and play with the grandparents after dinner.  Then it happened, minutes after eating dinner, for the fifth time in less than two weeks, DR broke out in hives.  This time it covered his entire body.  As I sat him down to examine the hives, something new happened:  he started coughing, couldn’t catch his breath.  As his grandmother try to soothe him with water, I grabbed his Epipen and called our pediatrician’s office.  The nurse-on-call advised me to administer the Epipen and called 911.  So for the first time ever, I held my child down and jabbed the auto-injector into his leg.  He squealed and looked at me as though I had betrayed him.

The next leg of our anaphylactic journey would bring even more questions as we treated what we could, fought for a diagnosis, and made new discoveries in the crazy world of food allergies.

~Lacey

Tips for getting an affordable Epi-pen

Food allergies are scary, exhausting, and difficult to manage.  From the first reaction, the doctors’ appointments and testing, the food-purge, and the education and advocation of others, there are so many bases you have to cover, and so many discussions around each.  However, people often forget to mention the costs.

When I worked in a Medication Assistance program, we often used a pharmacy resource call RXOutreach that sold expensive medications to patients who were no more than FPL.  Unfortunately, looking now they are charging $200 for a pack of two as well.

Those who don’t have insurance and are no more than 200% of the FPL are eligible for Mylan’s Prescription Assistance Program (PAP); however, the paperwork required and turnaround time for processing could be 2 months or more.  The application has to be printed and mailed in with financial documentation, proof of no insurance, and a prescription from your doctor.  The application can be printed here: mylan-epipen-frm

In one of my online support groups, citizens from Canada have suggested having your doctor send in your script to a Canadian pharmacy and have it mailed to you.  The cost would then be between $5 and $20.  This could take a month to receive.  My only concerns with this is knowing whether or not the pharmacy you use is legit and the fact they are not FDA monitored/approved.

If you have insurance, do not fear; there is still an option for you. Mylan also offers a My EpiPen Savings Card, boasting a $0 copay for 6 pens for those with insurance.   This, of course, comes with an asterisk.  The card only covers $300, so if your insurance still expects you to pay $300, then that is your responsibility.  Lauren Reiniger has a blog post about her own struggles with the cost of Epi-pens despite the fact that she has insurance: “The EpiPen Might Save My Life, But Not Before it Breaks My Bank“.

Unfortunately, there are those who cannot wait for a prescription from Canada or the drug company, those who aren’t eligible for prescription savings, and those with no money, so what choice do they have?  Is it fair that they should take the chance, risk their life?  The issue of food allergies already has so many added costs, it doesn’t make sense that this one life saving drug should be so inaccessible to those who really need it.

~Lacey

*Permission granted by Lauren Reiniger to mention/link to the post “The EpiPen Might Save My Life, But Not Before it Breaks My Bank“.

It takes a village

When you send your child out into the world, you worry that they may not be cared for as you expect.  When your child has a food allergy, this fear is amplified by 1000.  I have struggled with this a lot lately as I’ve seen mothers and fathers post about the inconvenience food allergies cause them and their child(ren). For a parent of a child with severe food allergies the memory of that first hive break out or the unresponsiveness of the first anaphylactic reaction is enough to worry anyone. Knowing that there are school policies in place for lunch and specific foods allowed gives me enough peace of mind to not just keep my child at home – and yes, this was a comment a parent made: “All kids with food allergies should have to be home-schooled.”  I posted something similar to this on my Facebook page and was shocked to see parents who agreed with the statement or believed that kids with food allergies should be segregated.

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This issue even affected our decision in which school to place our child, as parents from the one he was going to attend started cyber ranting when the administration sent out a reminder that certain types of food were not allowed as part of school policy. These were not new policies that had been made for my child; these were already in place when we applied, but as I saw parent after parent complain about the “issue” I realized that in order to protect my child we could not go to this school.

I never wish a food allergy on anyone, especially a child, but I hope the world becomes more understanding of the dangers that lurk for those who do suffer from one.

 

~Lacey