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For months after she was born Piper seemed to develop normally, cooing, making eye contact and flashing dimpled grins right on cue.
"She is already trying to roll over," Annie blogged on Sept. 12, 2011. "We are amazed at what she can do already, and she is just 3.5 weeks old!"
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The doctor suggested that, unless she suffered delays, to wait until she turned 2 to put her through the stress of testing.
A month later she had her first seizures and her first long stint in a hospital.
"My heart is heavy and my mind, body and spirit are tired ... I am trying to give my worry to God but it is easier said than done. I’m not sure I will ever feel like myself again," Annie wrote on November 11, 2011.
‘So helpless and frustrated’ » That year was a blur of doctor visits and brain scans as the Koozers searched for a drug to calm the seizures.
To date, they have tried nine therapies, including phenobarbital. It left Piper like a zombie, said Annie. "She was sedated and lost muscle tone. She stopped smiling for nine months."
While weaning her from the barbituate the family sought approval to use vigabatrin, then an investigational treatment known as a "wonder drug" in the Aicardi community.
One of the side effects, however, is permanent vision loss. Already Piper’s retinas are dotted with small holes, one of the markers of her disease. She has good vision but probably sees the world as if she’s looking through Swiss cheese, Annie surmises.
"Last night we had a particularly bad night. She wasn’t able to fall asleep until 4 a.m. because she just had cluster after cluster [of seizures]...250 in a 6 hour period," Annie blogged on Valentine’s Day in 2012, days before receiving approval. "I felt so helpless and frustrated I would have done anything to help her (like give her vigabatrin). I guess God is giving me a sign."
It cut her seizures in half, but the Koozers wanted a better therapy with less harsh side effects. They were out of options.
Their neurologist in Tennessee supports the couple’s decision to try cannabis, which they learned about through support groups on Facebook.
"He understands we’ve reached the end of the line. There’s one more drug, but it has a high chance of liver failure and he recommended waiting to try it when Piper is older," said Justin.
CBD mystery » Scientists are still learning how CBD works. One theory is that it modulates the transmission of electrical signals in the brain.
The human body makes endocannnabaniods similar, but not identical, to cannabinoid compounds in marijuana, said Gedde. "We have receptors to cannabinoids all throughout our bodies."
In our brains and nervous systems, messages are sent through electricity from cell to cell, directing them to perform activities. With epilepsy, those signals get out of control, like an electrical storm.
The research is incomplete but some studies suggest cannabinoids, when released, have a dampening effect on those signals, calming the seizures, Gedde said. "So kids with epilepsy, it could be that their natural cannabinoid system is insufficient."
But Igor Grant, director of the Center for Medicinal Cannabis Research at the University of California, San Diego, urges caution.
"What we don’t know is, do most children benefit or is there some subset who uniquely benefit?" he said. "We also don’t know if it’s doing some harm ... CBD is not psychoactive, but that doesn’t mean it’s harmless."Next Page >
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