Tuesday, January 22, 2013

Necessary? What do you think?

I'm soliciting advice today.

My youngest child, Abbey, has an EpiPen that was prescribed for her six years ago. Abbey broke out in hives after cracking and eating pistachios. Her hives were pretty mild but upon telling our pediatrician about the incident, she explained that first exposure to an allergen may not prompt a life-threatening anaphylactic situation (typically it is the second, third, or subsequent exposures that trigger it) but it's always good to be prepared. She prescribed two double-packs of EpiPen for Abbey and it was me that went into shock when I picked them up from the pharmacy. Ch-ch-ch-ch-ch-ch-ing. They were extremely pricey even with our insurance!

For a year or two, my pharmacy would switch them out upon expiration for a new set of Epipens which was a phenomenal deal. Basically, I paid for those first two double sets then just traded my expired pens for four new ones every year. Sadly, that program was short-lived. Probably because pharmaceutical companies figured out they were losing lots-o-money. 

In the 6+ years that Abbey has had her Epipen prescription, we've NEVER ONCE needed to use it. I'm just not sure she really even needs them. Every year I buy new ones and every year they expire unused and go straight to the trash bin. They're still expensive, even with insurance. I do not like paying for something she may or may not need and something that ends up getting thrown out every year. Honestly, it's like flushing $100+ a year down the toilet.

Now please hear me--if I thought that my child could not survive without them or her life depended on them, I would gladly fork over the money. And I also would still have a double set (I only refill two pens every year now instead of four--because throwing $200/year in the trash was KILLING me). But you know what? When we go on vacation we never take her EpiPen. We never even think about it. In fact, the only set she has is the one at school and my only reminder that she even has a set of pens is the paperwork from the school nurse every summer reminding me to bring her pens to school and fill out the dosage and consent forms.

In some sense the school system is what keeps me enslaved to renewing the EpiPen. Once you have that prescription/allergy listed on your medical file, there's not much getting around it. Any field trip she goes on, the Epipen goes too. Any after school (on campus ) activity, the EpiPen is there with her. It's so far off of MY radar that I once accidentally left her pens on the school bus after a field trip and didn't realize it for days. Thankfully her teacher noticed them and turned them into the office or I probably would have been in a lot of trouble with the school nurse. Oy!

I rarely buy pistachios anymore because of her allergy but the few times we have, she's just avoided them and been fine. She eats all other kinds of nuts (not willingly but enough to know she's not allergic) and tolerates them just fine. 

So...my dilemna and need for advice?

Do I  count it a blessing that $100/year is something I can afford and keep paying it as "insurance" against an allergy that I think is a bit overblown? I don't see an end in this for at least 7 more years of public school, and the out-of-pocket amount that we will have paid by the time she graduates is a lot!

Or do I stop renewing the prescription and risk it? (And some of you might already think I am risking it by only having a set at school!)

My gut says I'm okay to risk it. I'm not sure what my doctor will say. I called her office this morning and talked to her nurse. She asked me a ton of questions and told me the doctor would review it and let me know tomorrow. There's no way I can know what she'll say but my guess is her liability is too much for her to nullify the script.

It's a hard mommy call to make, huh? What would YOU do? 

PS: I know that some of you have children who are extremely at risk for allergies and an Epipen is a life-saving device.I do not want to appear callous or diminish anyone's need for epinephrine. I just don't think that I agree that Abbey's prescription is warranted. I should also mention that I'm not a huge fan of traditional medicine and that factors into my thinking. 

*Follow up: Our pediatrician called me late last week to further discuss this with me. She doesn't feel good  about Abbey not having an EpiPen at this point (liability issues, I'm sure) but she did refer me to an allergist for testing and agreed to go with the allergist's recommendation. I agree with this plan of action, especially since Abbey was NEVER tested for this allergy before the pen was prescribed. So that's the plan. Thank you for all of your comments and private emails!


Deidre said...

O is allergic to tree nuts and we carry an epi-pen. I, too, have heard it could be worse with 2nd or 3rd exposure. I have never had to use an epi-pen, though we carry one everywhere. I feel the same way when I throw one away, but then just realize how thankful I am that we didn't need to use it. Will your doctor do a more current skin test on her with just the pistachio test? Our dr told me we could do this as Olivia gets older to see if she has grown out of the allergy. Just a thought ...

Miss G said...

Oh Meredith, our epi pen Rx that we were just given for the first time was $252!!! After insurance! The super sweet pharmacist at Walgreens asked me if I knew how much it was when I went to get it and I about went into shock. That started an involved all day process of calling insurance, looking online for coupons, generics, everything we could think of to try to save some money. Ouch.

And yes, ours expires in 11 months. I can't leave it in his diaper bag for church or backpack for preschool because those things are within reach of other kids. I honestly haven't quite figured out how to keep up with them. I have heard about subsequent exposures possibly being worse and with David as little as he is, I can't rely on him to be able to communicate with me or someone else accurately if he is having a reaction that could be life-threatening.

The other thing is that for the first two years of knowing he had a dairy allergy, NO ONE ever suggested to us that he needed an epi pen or gave us a script, so we didn't have one and I didn't think anything of it. Then our new dr. (who I really like and respect) gave us an Rx for one but I honestly think a lot of it is because if he didn't suggest it as a practitioner and something happened then he would be liable. I also think it's lame that the pharmaceutical companies only sell them in dual packs now as it just seems a way to make more money. I know their reasoning is "in case one is defective" but honestly, if you're going to charge me $252 can't you just make sure you have a reliable product?

There are other medical type things as well that I wonder "is this necessary?" "am I playing into the fear game?" "is this really what is best for my child or not and how do I get the full information to be able to make an informed decision that is not prejudiced by $$$$ or fear on other people's parts".

I think this is one of the very hardest things about being a parent - trying to make decisions for someone else that don't have clear right and wrong answers.

I guess just pray about it and continue to listen and then go with what you're feeling. Kelly

Lisa said...

Theoretically, she goes into shock and someone calls 911 at school or at home. That is what I would do. Allergy testing is a cheaper alternative. I would not buy another epi pen. No guilt. Just common sense.

Anonymous said...

Ask your pediatrician for a blood draw allergy test. A vial of blood is drawn and they can test for the allergy from the blood-no full blown allergy test. Our son has life threatening food allergies and this is how we tested him for the first 4 years of his life. Also keep the Benadryl singles dose packets everywhere-stash some in your vehicles, purse, ets. Benadryl begins to reverse the allergic reaction, the epipen helps to keep the airway open until help arrives. (At least that is how our allergist explained it to me.) Holly in Indiana

mer@lifeat7000feet said...

Thanks, y'all. Definitely going to ask that she be tested for that specific allergy!

Anonymous said...

I'm a RN- and a mom- so here is my 2 cents worth. (And I worked at an Asthma/Allergy practice for 3 years)

I usually am on the careful side with allergies. However, in this case:

1. She is old enough to stay away from what she knows triggers the problem.

2. I would keep Benadryl on hand at all times. (This is way way cheaper than the epi-pen.)

3. You have never needed the epi-pen. This says a lot. However, I do fear the one time you DO- and you don't have one. But that said, I feel comfy with the above plan.

Just staying away from what triggers her is huge. Being very aware. Keeping her hands washed when others around her are eating the things that might cause a problem. I'm thinking she should stay away from all nuts.

In the event something happened-2 Benadryl would buy time until 9-1-1 got there. Which is pretty quick these days. It's a horrible thought and so scary to think about.

If she had unknown triggers and reacted to every little thing, or she was young and couldn't be aware- I'd tell you to get the epi-pens.

Kelly in Michigan

Rachel said...

We have allergic children with Epi-Pens and I understand the cost involved. Maybe it is because the severity of the allergies, based on their skin and blood tests, but I would never go without them unless their allergies change. Our daughter had the rash and hives after her first exposure to pistachios, too, when she was 6 which led to the testing. She is also allergic to cashews and our doc says they have the same protein as pistachios so you might want to watch for that. You just never know when there will be an accidental exposure from cross-contamination (which we had once from Panda Express, must have been a bit of cashew that somehow got into the orange chicken we ordered). With our insurance the dual-pack at Costco is $35. They come in 2-packs so that if you need the further dose after a specified time before you get to the ER you have it there on hand. Unfortunately we've had some reactions, one that was in the middle of rural Nebraska where the nearest hospital was 20 min. away. We ended up not using the epi-pen, but it was an assurance to have it should her symptoms have required it. My advice: get her tested and meet with an allergy doctor so you'll have peace of mind and be prepared in any situation.