Pubdate: Wed, 15 May 2013
Source: Chicago Tribune (IL)
Copyright: 2013 Chicago Tribune Company
Author: Margaret Storey
Note: Margaret Storey lives in Evanston.


My 9-year-old daughter has Aicardi syndrome, a rare genetic disorder 
that causes extremely hard-to-control seizures, debilitation, 
disability and early mortality. She began having seizures at three 
months of age, and since that time has had multiple seizures every 
day, with rare exception - probably to the tune of nearly 200,000 
seizures in her lifetime.

For most families, even one such day would be an emergency. For ours, 
it is the norm.

My daughter is a beautiful, loving girl who goes to school, enjoys 
music and parks, loves to be read to and adores looking at big, 
modern art in museums. She cannot walk independently, cannot talk and 
wears diapers. Every day she is at risk of Sudden Unexpected Death in 
Epilepsy, or SUDEP, which accounts for 34 percent of all sudden 
deaths in children.

She is one of the 3 million Americans who have epilepsy, and one of 
40 percent whose seizures cannot be controlled by anti-seizure drugs. 
She has tried 10 anti-seizure medications as well as a high-protein/ 
low-carbohydrate diet called the ketogenic diet; she takes three 
anti-seizure medications at once and has a vagus nerve stimulator 
implant that sends mild electrical pulses to the brain. These drugs 
help her, but she nonetheless experiences an average of three 
seizures every day. Moreover, the medications cause persistent side 
effects that negatively impact her quality of life, particularly her 
gastrointestinal, bone, dental, cognitive and mental health.

The Illinois Senate Executive Committee recently voted, 10-5, to move 
the House-passed medical marijuana legislation to the Senate for a 
vote. The bill is expected to pass, and though Gov. Pat Quinn has not 
committed to signing it, the general expectation is that the bill 
will become law. This should be received as great news for the many 
people with "debilitating" conditions that the bill is supposed to 
help - people for whom medical science has documented real, 
measurable and safe outcomes of the controlled use of cannabis or its 
component of chemical compounds.

It's too bad that the legislature has ignored the medical needs of 
some of the most debilitated, and most vulnerable, patients in the 
state: children with epilepsy.

Imagine her father's and my reaction upon learning that the 
legislature, in its concern not to send a "message" to kids that it 
is safe to smoke marijuana, decided that kids like ours, for whom 
medical cannabis has the potential to be as safe and effective as 
typical anti-seizure drugs, should be excluded from the benefits of 
this new law.

They have done so, I hope, only out of ignorance. Take, for instance, 
the parent survey conducted by Stanford University neurology 
researcher Dr. Catherine Jacobson. These parents had children with 
some of the most difficult-to-treat syndromes of epilepsy found in 
children: Dravet syndrome, Doose syndrome and Lennox-Gastaut 
syndrome. All of the kids were being treated with a nonpsychoactive 
compound made from cannabis - cannabidiol. Their parents report 
remarkable results - 83 percent noted that their children's seizure 
frequency had been reduced. Two-thirds of these children achieved a 
greater than 80 percent reduction in seizure incidence. Seventy-five 
percent of the parents reported success in weaning their kids from 
other ASDs; a similar proportion noted improved sleep, mood and 
alertness in their children.

Most important, the survey's author notes that common negative side 
effects reported on other ASDs were notably absent on cannabidiol, 
including rash, vomiting, nausea, confusion, insomnia, anxiety, 
irritability, dizziness and aggressive behavior.

There is no likelihood that my daughter will become a drug addict 
from using a compound within cannabis in a medically controlled 
setting. There is, however, a good chance that participation in a 
controlled study of these compounds could open the door to new 
treatments for her, and the many children like her, who desperately 
need medical innovation to save or improve their lives.

I urge the bill's chief sponsors, Rep. Lou Lang, D-Skokie, and Sen. 
William Haine, D-Alton, to reconsider and amend the bill to allow for 
the medically controlled and regulated use of cannabis for pediatric 
and adult patients with uncontrolled epilepsy. And to all Illinoisans 
who know or love someone with epilepsy, please let your legislators 
hear your voice on this matter.
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MAP posted-by: Jay Bergstrom