Christine Stuart photo
Susan Meehan and her daughter Cyndemae talk to reporters at the Legislative Office Building (Christine Stuart photo)

Mothers of children who suffer from seizures told the legislature’s Public Health Committee that they want the General Assembly to approve use of medical marijuana by children under the age of 18.

Susan Meehan, whose daughter Cyndemae has Dravet syndrome and had daily seizures until the family discovered cannabis oil, told the Public Health Committee about how she had to move to Maine in order to legally obtain her daughter’s medication.

Meehan, who described herself as a medical refugee, said it would be nice to visit Connecticut without the threat of prosecution.

Meehan has been treating her daughter with cannabis oil since 2013 and she still has one or two seizures per week, but is making remarkable cognitive progress. She now attends high school in Maine.

“Cannabis is not toxic,” Meehan said. “I can’t say the same thing about the 23” drugs Cyndemae was on before they discovered THC-A oil.

Meehan told the committee that all the antiepileptic medication her daughter took before cannabis made her seizures worse and caused her to lose weight. Now that she’s off all of those medications her health has improved, Meehan said.

The bill would give minors with severe epilepsy and terminal illnesses access to non-smokeable marijuana, but only with parental consent and the approval of two doctors.

The other conditions included in the bill for minors include cerebral palsy, cystic fibrosis, uncontrolled intractible seizure disorders, or irreversible spinal cord injury with objective neurological indication of intractable spasticity.

Linda Lloyd, whose 6-year-old son Henry also has seizures, broke into tears when talking about the fear that his next seizure “is the one that won’t stop.” She said she sometimes thinks “is this the seizure that will take my son.”

She said the only treatment she hasn’t been able to give her son is medical marijuana.

“Please don’t force me to leave my home to try this,” Lloyd said.

Sen. Terry Gerratana, who co-chairs the committee, said she hopes the legislature does the right thing this year and “moves with the times.”

A similar bill made it through the committee process last year, but failed to get raised for a vote in the House or the Senate.

This year is different.

This year’s bill has the backing of the Connecticut chapter of the American Academy of Pediatrics, a national organization that opposes medical marijuana for children.

Sandi Carbonari, the immediate past president of the Connecticut chapter of the AAP, said the national organization opposes the legislation because “there are currently no published studies on the efficacy of marijuana as a medication in children.”

However, “we in Connecticut recognize the potential for use in cases of children with terminal illness or debilitating conditions such as intractable seizure disorders that do not respond to traditional treatment modalities,” Carbonari testified.

Dr. William Zempsky, head of the division of pain and palliative medicine at the Connecticut Children’s Medical Center, told the committee in his written testimony that there’s more research to be done, but it has “become clear to me that there are some of our most vulnerable patients who would truly benefit from the use of medical marijuana.”

Connecticut is the only state with a medical marijuana program that doesn’t give access to minors, according to the National Conference of State Legislatures.

“While medical marijuana is not a panacea, for some of the children I care for it may provide relief from pain,” Zempsky said. “I would also suggest that you consider adding chemotherapy associated nausea and cancer-related pain in patients under age 18 to the definition of ‘Debilitating medical condition’ in the bill.”

But lawmakers like Sen. Toni Boucher, R-Wilton, don’t believe there’s enough research on the issue to give children access.

“As it stands, the scientific evidence in favor of medical marijuana is too scant, and the possible consequences too great to fall under this category,” Boucher said.