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MEDICAL MARIJUANA MIGHT EASE 2-YEAR-OLD'S 'NON-STOP' SEIZURES WHERE OTHER DRUGS HAVE FAILED, GRANDPARENTS SAY

Kathy Taylor never expected at age 66 to be fighting for her grandson's right to marijuana.

But that was before her grandson was stricken with relentless seizures which began around his first birthday.  The spasms and convulsions cause his head to jerk violently and make his eyelids flutter and his eyes roll.  They last up to 45 minutes.

Now nearly three, he takes powerful drugs that nauseate him and have caused severe weight loss.  But his seizures continue.

Especially distressing to Taylor is how her grandson stopped singing nursery rhymes and has regressed intellectually.

"They can't develop because their brain is dealing with non-stop seizures," the Derry Twp.  resident said.  "You end up with a kid that's disappearing right before your eyes."

Taylor, a retired lawyer, is among a contingent of Harrisburg-area parents pushing for Pennsylvania to legalize marijuana for medical use.  Many have children with severe seizure disorders

They say presently-available drugs don't stop the seizures.  They further say their children are on drugs which put them in a stupor and endanger their liver and kidneys.

They are convinced marijuana contains an ingredient that produces much better results without the side effects.

Many reached that conclusion after a recent report by CNN medical correspondent Dr.  Sanjay Gupta called "Weed." It focused on a Colorado child who was having hundreds of seizures per week.  The child, Charlotte Figi, was given an oil extracted from a special strain of marijuana plant.  Now she has only only two or three seizures per week, according to Gupta's report.

Presently, 20 states and the District of Columbia have legalized medical marijuana.  Two states, Colorado and Washington, have legalized recreational use of marijuana.

In Pennsylvania, bills introduced this year in both the House and the Senate would legalize medical marijuana.

State Rep.  Mark Cohen, a Philadelphia-area Democrat, sponsored the House bill.  He said his goal is "to set up a legal framework where someone who is sick can get marijuana for medical purposes without violating the law."

State Sen.  Daylin Leach, a Philadelphia-area Democrat and sponsor of the Senate bill, said he wants the state to create a system where doctors can prescribe marijuana when appropriate.  The marijuana would be manufactured according to a safe process that would provide the correct strain for the specific illness.  It would be covered by health insurance.

Cohen and Leach each said some Republican legislators are opening up to the idea of medical marijuana.

"I think the chances are increasing every day," Leach said of the likelihood of passage.

But Gov.  Tom Corbett is on record as opposing medical marijuana and saying he would veto a bill.

And the Senate version is in a committee controlled by state Sen.  Pat Vance, R-Cumberland County, who said "the bill is definitely not coming out of my committee."

Vance argued there is no substantial evidence to support medical benefits of marijuana.

"Just because you read on the Internet that it helps this and that doesn't mean it does," said Vance, a former registered nurse.  "If you can show me scientific evidence, I would welcome that."

The group of parents are making the rounds of legislators' offices and say they have collected more than 10,000 petition signatures.  They point to a 2013 poll by Franklin and Marshall University which concluded 82 percent of Pennsylvania residents support use of marijuana for medical purposes if prescribed by a doctor.

Latrisha Bentch of Swatara Twp.  is among the parents pushing for legalization of medical marijuana.

Her daughter, now nearly six, seemed perfectly healthy at birth.  After a few months, she showed behavior which struck her parents as "quirky and odd" but also "incredibly endearing."

But around her second birthday she developed what her mother calls "very bizarre social phobias."

She was diagnosed with autism-related conditions and vascular abnormalities within her brain.  Then Bentch and her husband noticed muscle spasms and jerky movements later attributed to seizures.

Bentch said medications haven't stopped the

She and her husband considered surgical removal of part of their daughter's brain.  They rejected the idea after learning well over a quarter of her brain might have to be removed to eliminate the seizures.

Parents such as Bentch say they feel they are being thwarted by conventional views surrounding marijuana, and the belief that many who want legal access simply want to get high.

They stress the ingredient they want for their children isn't the one, called THC, which produces a high.  They say the ingredient they want, called CBD, can be extracted and turned into an oil that's added to food.

"One of the myths behind medical marijuana is that children will be getting high off it, which could not be further from the truth," Bentch said.

Marijuana has long been criminalized and stigmatized.  Some experts say that has prevented its potential as a medicine from being sufficiently studied.

In 1970, the federal government labeled it a Schedule 1 drug, meaning it has addictive qualities but little medicinal benefit.

But experts including CNN's Gupta now criticize that decision, saying it wasn't based on science.  Gupta this year apologized for his earlier dismissal of marijuana's potential as a medicine.

He wrote, "I have seen more patients like Charlotte ( Figi ) first hand, spent time with them and come to the realization that it is irresponsible not to provide the best care we can as a medical community, care that could involve marijuana ...  We have been terribly and systematically misled for nearly 70 years in the United States, and I apologize for my own role in that."

But Dr.  William Trescher, a pediatric neurologist at Penn State Milton S.  Hershey Medical Center, said the body of research pertaining to the medical impacts of marijuana is small.  Moreover, little is known about possible long-term medical impacts, such as impacts on a child's developing mind.

Still, he said the available research gives a "hunch" the marijuana extract might benefit people who suffer from seizures, and he welcomes more research.

Trescher also acknowledged that for patients with the most severe forms of seizures, he would be willing to try almost anything, because the seizures and the treatment are so damaging.

Based on the available research, if medical marijuana were available in Pennsylvania, "I would be very circumspect in recommending it," he said.

Louann Speese-Stanley of Upper Allen Twp.  saw "Weed" and thought "this is it.  God is answering my prayer."

Her daughter, now 16, has been having seizures since she was a few days old.  Speese-Stanley said anti-seizure drugs keep her in a near "catatonic" state.  She misses an average of 37 days of school per year has the intellectual level of a toddler, her mother said.

She will consider leaving the state if she can't obtain the marijuana extract for her daughter.  "I just feel this is worth a try because nothing else is working ...  why not try something that is working for other children?," said Speese-Stanley, 54.

There are signs support for legalizing medical marijuana in Pennsylvania is growing.

State Sen.  Mike Folmer, R-Lebanon County, said he supports the use of marijuana-derived medications if prescribed by a doctor.  He said "medical cannabis is a plant that has been put here by God to be used for our benefit."

"This would be one more arrow doctors could have in their quiver for helping patients," he said.

State Rep.  Stephen Bloom, R-North Middleton Twp., said he opposes legalizing marijuana for medical purposes because of concern "It will spread drug use among our youth at a more rapid rate."

But when told medical use might involve a non-intoxicating oil, he said he wasn't aware of that, and would be interested in learning more.

Taylor, the Derry Twp.  grandmother, said "I want to be kind to the legislature of Pennsylvania, but I don't think one of them is a neurologist and to have them in charge of the health care of my grandson is really distressful to me."