PORT KENT, NY – New York state health leaders are taking steps to speed up, implementing medical marijuana for kids with epilepsy.
Two children died last month in Western New York.
As a result, Governor Andrew Cuomo sent a letter to the acting health commissioner last week to get the ball rolling in an effort to prevent other parents from suffering.
Christmas 2011 was life-changing for the Sussdorff family.
“We thought he was sleeping, his eyes were rolled to the back of his head, he was slightly convulsing, he was non-responsive at all which was probably the scariest part,” said Angie Sussdorff, a Port Kent mother who has a son with epilepsy.
Angie Sussdorff, her husband and 2 kids, live in Port Kent.
5-year-old Brodie was only 2 1/2 when he had his first seizure.
“I tell you that first year is literally like living in hell, because you just don’t know anything, and everything is trial and error. It’s heartbreaking to watch them go through that and not be able to do anything to help them,” said Sussdorff.
Three doctors later and frequent trips to Boston’s Childrens Hospital, Brodie was diagnosed with Doose Sydrome, a severe type of epilepsy.
“He gets 8 pills total, 3 times a day,” she said.
A regimen she’d rather not have to put her young son through.
“Brodie has to take 4 supplements because of the diet, he’s on two high doses of pharmaceutical medications, and I have to worry about acidity, kidney stones, did he get enough water in him. If he’s got cannabis oil, and we’re able to eliminate all those things, I mean quality of life will improve 10 fold.”
While New York lawmakers passed the Compassionate Care Act this year, health officials have 18 months to put it in motion.
The Epilepsy Foundation of Northeastern New York supports efforts to identify better treatments for epilepsy, but they said time is needed for further research.
The foundation points out just because you heard about it in the media, the reports do not represent the level of evidence needed to understand the potential benefits and potential risks of medical marijuana.
But for Angie, the potential benefits, outweigh the risks
“For us, that would be the next step, because if that wasn’t the next step it would be surgeries. We’ve tried the meds, he’s on the diet…make life a little bit easier.”
A spokesperson for the department of health said acting State Health Commissioner Dr. Howard Zucker is looking at the best ways to speed up the process for families like the Sussdorffs.
The next step would be to figure out how to safely and effectively produce and dispense cannabis to those families.