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Op-Ed: Approved medicines for seizures are not 'safe'

Published December 5, 2013 5:25 pm

This is an archived article that was published on sltrib.com in 2013, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

I would like to thank Mr. Bird for his concern for the safety of our children with regards to the potential use of cannabis oil ("Cannabidiol for epilepsy is unproven therapy," op-ed by Pat Bird, Nov. 23). It is their very safety that I would like to address as well.

At the age of 4 months my daughter experienced the first of what has now been, literally, millions of seizures. In an effort to stop this onslaught to her brain, we have tried more than 30 FDA-approved treatments. Not one of them has had any significant positive impact. Most have led to sedation and ataxia. One did not allow her to sweat, causing her to severely overheat. Another caused a life-threatening allergic reaction known as Stevens-Johnson syndrome, which required a 12-day hospital stay. Other children we know have experienced liver failure or bone marrow suppression. Do the side effects of these treatments sound safe?

When my daughter was 2 years old, she had a convulsion that lasted 45 minutes. Stopping it required the administration of massive doses of medication, putting her into full respiratory arrest for 30 minutes. Does this qualify as safe?

My daughter has had multiple seizure-induced fractures and contusions. How is this safe?

You mention that the long-term safety of cannabis oil is unknown. That may be true. However the long term effects of frequent, uncontrolled seizures and FDA-approved medications are very apparent. My daughter is a perfect example. She is now 19 years old. The insult to her brain from near constant seizing combined with purportedly "safe" medications has left her functioning as a three year old. She cannot read or write, dress or bathe herself, or toilet unaided. She needs round-the-clock supervision. She is never safe.

Because all current treatments have failed my daughter, she requires off-label dosing with massive amounts of rectal valium 1 to 3 times daily in order function at all. What is the long-term safety of this?

Any potential risk associated with the use of non-psychoactive cannabis oil must be weighed in comparison to the undeniably detrimental effects of a life filled with seizures and the side effects of currently available treatments.

"Cannabidiol, hemp, Realm Oil, cannabis, etc.", ­— now named Alepsia — holds the most hope that we and many other families have had in years. Possibly ever. Currently, 80 percent of children being treated with Alepsia in Colorado are responding with a 50 percent reduction or more in seizures. Those preliminary results are far greater than any FDA-approved medications of which I am aware.

This cause is not about the "emotional difficulties parents of epileptic children are experiencing." It is about the very real physical, medical and developmental challenges that children with severe epilepsy are experiencing. Their lives are anything but safe. While I have been composing this message, my daughter has had three more convulsive seizures. She and countless others cannot afford to wait 10 years for FDA approval. A very real percentage of them would not be here to try it, and those still with us would without a doubt have further irreparable injury to their brains. Denying desperately ill children the opportunity to try this carefully prepared treatment is unconscionable and constitutes the least safe course of action.

Karen Glenn is an Orem resident and a member of Hope for Children with Epilepsy.