Sunday, March 29, 2015

Dear Doctor

This is to all the neurologists and epileptologists who object to the use of cannabis to control, reduce and eliminate seizures because it hasn't been appropriately studied and isn't approved by the FDA.

Dear Doctor:

You are aware that at least eleven anti- seizure drugs you readily prescribe have been studied by the FDA and proven to cause suicide at a statistically significant rate versus a placebo?

You know, I'm sure, that twenty years ago Felbatol was taken off  the market because deaths due to aplastic anemia were determined to be because of the drug. I believe the number of deaths was 19, 20 or 21--- give or take. You must know. The warning is pretty clear on the Black Box.

You know that among the side effects caused by the drugs you prescribe are liver failure and death, the aforementioned act of suicide, pancreatitis, loss of peripheral vision, severe birth defects, Steven's-Johnson Syndrome and so on and on and on...

You know that the drugs you prescribe for certain seizure types were never studied in clinical trials on the specific seizure type. You know that right?

You know most of the drugs you prescribe were never studied on children. Right?

You know it's a crap shoot trying to find the right drug to control the seizures. I know you do. I can tell because when a drug has failed you say something like  "Well. .. Let's try this one" OR " we could try adding (fill in the blank) and see what that does."

In my quest to control my child's  seizures I have dutifully followed your prescribed medication regimen. My child has endured numerous lab draws to ascertain if any of those despicable side effects are occurring; multiple hospitalizations for status epilepticus; days, weeks, months , years, of seizure and drug -induced confusion--- oh yeh--- dazed and confused indeed. The drugs have failed. ALL of them.

Am I willing to try something that the FDA hasn't approved and big Pharma doesn't control (yet)? You bet I am. You can also bet I'm not going to report it's working if it's not. You're not going to get away with insulting my ability to ascertain a reduction in seizures. " Mom reports" is not a phrase worthy of eye- rolling. I know when I'm not seeing seizures. You KNOW that!

I live this every day 24/7. You don't Doctor. You don't.


Epilepsy Mom

Tuesday, March 24, 2015

Changing Course

In preparation for Epilepsy Awareness Day Thursday, March 26th I've been reflecting about just what on earth all of us impacted by this despicable condition can do to effect real change. Many of us write blogs read by other bloggers who share the same misfortune. Others post on Facebook in the hope that some of our "friends" who do not have a personal experience will somehow "get" ours since much of what we write is gut wrenchingly honest and emotionally raw. We even use curse words. Some of us--- a lot!

So... What can we do? I'm really asking --- I do not have an answer. I've written a book, I've appeared on local TV multiple times, we've had numerous newspaper articles written about us, I served on the Epilepsy Foundation Board for 15 years, we have donated thousands of dollars, I've spoken at epilepsy seminars, I have opened up to friends and family (a few) about some of the bitter truths of parenting a young adult with epilepsy. And yet sometimes I feel like I'm spitting in the wind. I'm not getting younger. We've been at this for over 25 years. I want more than drugs with a host of side effects, I want medical marijuana legalized in every state and re-scheduled federally, I want to be free of the fear my son could die, I want a better life for Michael. I want it ALL. I want it NOW.

If you're still reading this and you have a suggestion--- by all means leave a comment. Increased awareness is a good start but I think we need to change tactics to reach that finish line sooner. Please. Help.