Have your cookies...(But don't eat them)

It's that time of year again.
This year, both my girls came home sporting bright yellow envelopes, colorful order forms, and ear to ear grins.  Girl Scout cookies!

Of course, I put on a brave smile and listen to them chatter about what they will do with the money they earn.  The youngest is much, much more interested in what she, personally, can earn (a PSP!  All she has to do is sell one thousand boxes.  That doesn't sound too hard, right?)  But there's a little something in my oldest's eyes.

We won't be buying very many boxes.  They all have gluten, and dairy.  They all have corn.  The Dulce le Leches even have food coloring!

However, this seemed like the perfect opportunity to educate other allergy sufferers (especially those who might have fewer, easier allergens to navigate) on the finer points of cookie ordering.  For many, this is is the season that comes but once a year.  A season chock full of thin mints, hoedowns/peanut butter patties/tagalongs and Samoas/caramel deLites, adorable imps in brown and green vests and girl power galore.

Some place an order because they can't survive without the mints.  Others order simply because they want to support scouting.  And each troop gets a portion of the proceeds, while each girl is given incentives to strive for.  It's a win/win situation.  Unless you have food allergies.

If you do deal with food allergies, the dancing pigtails you see through the kitchen window when your doorbell rings may cause your heart to sink.  However, what few people realize is that each order form actually carries a list of ingredients for each of the cookie varieties.  You can look up the lists yourself at either Little Brownie Bakers or ABC Bakery (depending on which official Girl Scout bakery your local GS council chooses to order from.)  ABC Bakery is especially allergy friendly, with extra precautions in place.

If you simply can't (or don't want to) eat the cookies, you can ask your local girl scout about the Cookie Share program.  Some parents don't want to overplay the "give us money" number, but I think the program's kind of cool.  Basically, you sign up to buy a box or two or ten of girl scout cookies, and designate where you want the cookies to go.  Our local council offers to either send cases to the Military over seas, or to the local food bank.  The council chooses appropriate cookies (thin mints do not fair well in Afghanistan, but trefoils and do-si-dos will still melt in a serviceman's mouth) to be sent to the location and distributed appropriately.  I like to send to the military, since I hear they get pretty lonely and especially miss girl scout cookies...which are only available for a limited time.  The familiar cookies have been sent to brighten the days of disaster victims, as well.  And bring about smiles at the food pantry just when Christmas generosity has worn off and the "treats" section is looking thin. 

If you choose to donate, the cookies go to a good cause, the girl gets credit toward her incentive and the troop still earns their cut.  You get a receipt for your taxes.  Everyone is happy.

Blue Dye

It's out there.  It's a neurostimulant.  It's actually being used as an experimental treatment for migraines.
I knew that it affected migraines because several years ago, we traced some very spectacular looking migraines (total pallor, projectile vomiting, collapse) to blue toothpaste and pretty blue jellybeans used in math centers.  (Count the red and blue jelly beans.  Now eat the blue ones.  How many are left?  No wonder Penguin doesn't like math.)

However, the greater medical community (and the even greater American populace) seems to remain in the dark. 

I recently had yet another argument with a pharmacist about the relevance of inactive ingredients in medications.  She stated that it wouldn't be serious.  I politely replied that it would counteract our attempts to treat the migraine by adding new triggers.  She disagreed, because there isn't a lot of blue in the medication.  It looks white and red.

This is the trouble.  Even if people begin to suspect a trigger, whether it's for migraines or stomach aches or behavioral issues, members of the medical community dismiss them in a hurry.  They're too quick to cast shadows of doubt on people's personal observations.   They ignore statements.  Talk over people in reassuring tones.  And sometimes we let them.  I know I used to.  And sometimes, especially when I'm sick (and it's regarding me) I let them.

But this was for my daughter.  So I persisted.
We spoke with a new neurologist on Wednesday.  She was interested, and believed us about the blue dye being a trigger.

Unfortunately, she's never had to deal with the pharmacy and inactive ingredients before.  And apparently she's had as much trouble with them as we did.  I think part of the problem is that it isn't the neurologist's job to look at the inactive ingredients of a medication.  It's the pharmacist's job to find a suitable form of a prescription medication.  They are supposed to be the experts in formulas.  The doctors are supposed to know diagnosis, tests to use for diagnosis, and suggested treatments.  It's the patient's job to choose a treatment, in consultation with the dr, and then carry it out.  It's the pharmacist's job to assist them in getting the suitable treatment. 

But when they don't feel like helping, it leaves the patient high and dry.  The government is making it more and more difficult to access compounded medication.  Compounding pharmacists need to protect themselves in order to serve the majority of their customers; and compounding pharmacies are a dying breed. 

With the rising awareness of dye reactions, inactive ingredients in medication is going to continue to be problematic.  And misinformed medical personnel can actually prolong diagnosis if the patient believes, in error, that medication is safe for them.  If it should be safe, but it causes a rash, or anxiety, or depression, or insomnia...these symptoms could be construed as complications of conditions being treated. 

How many people take medicine for depression?  Or blood pressure?  Or ADHD?  Or countless other mild, but chronic, medical conditions?  Ones that include symptoms like headaches, anxiety, behavioral issues, insomnia.  How do you know of your symptroms are solved by a medication that can cause the symptoms you're treating?  What sense is there in treating my daughter's migraine with a medication that contains an ingredient known to trigger her migraines? 

I may not have a medical degree, but that doesn't mean I don't need an answer to that question before taking a chance.  I'm concerned for the individuals who miss the fine print, who don't question the pharmacist, who suffer in the dark. 

But I'm not sure how to fix it. 

If I were to fix the healthcare system...

• Forget insurance for everyone.  Healthcare for everyone.  Affordable healthcare.  
• Standardized billing codes.  They have standard numbers for produce, they can create nationwide billing codes for well child, well adult, pap smear, emergency stitches, UTIs, heart attacks, etc.  
• Responsibility in the healthcare field.  Everyone makes mistakes.  Doctors and nurses are human.  But grown ups own up to their mistakes.  If a healthcare provider makes an error, they should cover the costs of fixing it.  Period.  That's the way it is in any other industry.  If they forget to run a B12 test when they draw blood, they pay to draw more blood.  If they cause an allergic reaction by inadvertently giving a medication containing a known allergen (for the individual) the individual should not bear the cost of treatment.  (within reason.  If they insist on a -cillin drug and know that they'll react, it's their own fault.)  If they remove the wrong mole, they should cover the cost to go back in and remove the right one.
• Full disclosure.  All options should be discussed.  And if an insurance plan does not cover the cost of a chosen course of treatment, a payment plan should be implemented.  One that takes into account a person's financial situation.  In other words, income should not dictate your access to the best treatments.  
• For non-medically necessary treatments and procedures, predicted costs should be readily accessible.  The patient's portion of a payment for a ct scan or laparoscopic surgery "just to see" should be part of a decision making process if the patient feels it is relevant.  
• An extremely unsatisfactory office visit deserves a refund of at least part of the copay.  The patient is the customer.  They should be treated with respect, educated to their degree of willingness and interest, and should be a partner in their own healthcare.  If a doctor disagrees with a patient, they should free them to go elsewhere.  Doctors should be free to admit when they aren't comfortable treating a patient's condition and not willing to learn.  This would probably cut down on misdiagnosis, and overuse of the mental health system.  :P 
• Not sure if this should be a healthcare mandate, but patients should be encouraged to use doctors wisely.  Perhaps a "good patient" benefit for not overusing the cold/flu visits?  Or for getting standard tests run prior to an appointment so that you can have the best use of your, and the doctor's, time.  (A doctor can request or approve a request for tests but insist the patient come to an office visit to receive results and discuss options.) This would encourage doctors to educate patients on managing their health, and encourage patients to take charge of their own health, and make wise personal decisions (wait and see if a low grade fever breaks within 48 hours)  Perhaps having a health nurse who can reccomend home treatments with the caveat that any patient wanting to be seen will be given an appt would work. 
• Pharmacies should be required to release a prescription (print an electronic one) if the patient requests it.  That way if there is a disagreement between patient and pharmacist, the patient can go to a different pharmacy.  This would encourage the pharmacist to work with patients, as well as empower patients to self advocate when necessary. 
• The process for applying for insurance should be fixed.  You should be able to get a quote before submitting estimated payments.  You should be able to get quotes from several companies.  And you should be able to regularly shop around while insured, without endangering your insurance.  If currently insured, there should be no "pre-existing conditions", even if you're switching from employee sponsored to self subscribed.  And self subscribers shouldn't have to pay more than employee-sponsored programs do.  

Just a few of my thoughts after spending a day arguing with our new "insurance specific" pharmacy about whether or not blue dye reactions are valid, and another entire day waiting next to the phone to talk to a doctor about migraines and dye and medication options.   I can see where this insurance could be good for someone without allergies or extenuating circumstances.  But, we have extenuating circumstances.  And I don't have the patience for them to learn on us, especially if they don't want to learn from us.