Saturday, February 27, 2010

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. 

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