Extract provides ‘Hope’ to girl with seizures
‘Safe harbor’ letter allows medicine from Colorado while Pennsylvania law is set up
It’s 4 a.m. and you’re standing by helplessly while your six-week old is having seizures — it’s every parent’s nightmare.
The seizures—“her head turns left and her body stiffens” — only last five seconds at first, “but I knew it wasn’t right,” said Lauren Marcheskie.
It was her daughter Aria who was having the seizures and she would come to knowmuch, much more in themonths that followed.
Now seemingly no different from your average 3-year-old,
Aria — a little nervous that the interviewin the strange building might be another of the endless doctor visits she’s endured — plays with some toys from her back-pack and talks to herself while her mother talks about their struggles.
Marcheskie still remembers the night it all began in earnest — Dec. 7, 2013.
The seizures were coming so fast, it was hard to tell when one ended and the next one began.
“There was a big snowstorm, it seems like there was always a snowstorm when things were worst. It was always worst inwinter,” she said.
So Marcheskie and Aria’s father Ian made their way from Royers ford through the snow to Children’s Hospital of Philadelphia were Aria was put under video surveillance so doctors could time the seizures. Ultimately Aria had an electroencephalogram( EEG ), a test that detects electrical activity in the brain.
What followed didn’t make things any better.
Medicines thatwork, then don’t
Aria was diagnosed with focal cortical dysplasia.
For those of us who didn’t go to medical school, Marcheskie, now an expert, explains:
“Aria was diagnosed with Intractable Epilepsy with Focal Cortical Dysplasia with Polymicrogyria. Focal Cortical Dysplasia is amal formation of cortical development, whereas PMG is categorized as abnormal development of the brain prior to birth, e.g., the many tiny folds. Intractable epilepsy, also known as refractory or treatment resistant epilepsy, is diagnosed when the seizures cannot be controlled by medication,” she wrote in an email.
“Aria has many tiny folds in her brain instead of the larger ones most of us have, so her brain did not develop normally in the womb, even though it is developing normally now, so there is a lot of miscommunication between cells,” she said.
Knowing what it was, didn’t make things any better. In fact, things got worse from there.
Aria was having 60 to 80 seizures a day, each lasting as long as two minutes, and she was being treated by a
smorgasbord of pharmaceuticals.
On each, “there would be a honeymoon period, where they would appear to work and the seizures would decrease, but they always came back,” said Marcheskie.
What followed were seesaw months of trying different drugs, having them work for a time, a brief period of hope, then the return of the seizures.
Going under the knife
Then the words “brain surgery” entered the doctors’ conversation.
Aria went under anesthesia on July 13, 2015 and doctors removed part of Aria’s right temporal lobe and small part of the parietal lobe and occipital lobe.
As a result, her vision w as impaired in the upper left quadrant. To this day, she still has that visual impairment.
“Less than 40 percent of the people who get their procedure are seizure-free, but I didn’t know what else todo,” said Marcheskie.
Afterward, Aria was seizure-free for 45 days, and then they started up again.
Aria had a second brain surgery that September but the seizures continued so her parents started looking for other options instead of even more phramaceuticals.
“She was already on three medications and it hindered her development, we were working with her on animal sounds and she wasn’t getting it. She was like a zombie,” Marcheskie recalls. “We thought, we can’t keep putting her through this. There has to be a better way.”
Finding ‘Hope’ on the Internet
She found a betterway on the Web — where she read about a product made from marijuana called Charlotte’s
Web, named after the little girl suffering from severe epilepsy.
“I read about a strain beingmade in Colorado called Haleigh’s Hope,” Marcheskie said.
Like Charlotte’s Web, Haleigh’s Hope is named after another little girl, this one named Haleigh Cox who was suffering from hundreds of seizures a day.
Its effectiveness convinced the state of Georgia in 2015 to pass a law allowing low-THC cannabis oil for certain “medication-resistant epilepsies” to be used within state borders.
The bill is named the “Haleigh’s Hope Act” and Marcheskie has no dispute with the name.
Marcheskie decided to look into it.
“I wasn’t just looking on di stressed mo mb logs, I was looking for research with evidence,” she said. “Whenever I brought another option to the doctor, I always brought evidence and scientific information.”
Marcheskie said it was her research that finally convinced her doctor to try a medical marijuana product before another surgery — a doctor who is still not convinced that Ha leigh’ s Hope is what finally brought an end to Aria’s seizures.
“We’ve agreed to disagree,” Marcheskie said with a broad smile.
“We slowly weaned Aria off all her meds, one at a time, and two weeks later, once Iwas sure it was all out of her system, I began the introduction” of Haleigh’s Hope Marcheskie said.
By last April — four month’s of taking a few drops every day of the oil mixed with the extract of that particular strain of medical marijuana — Aria was seizure-free during the day and only seizing in her sleep.
Last September, she had another EEG. It showed that the seizures Aria was having in her sleep “are a form of (post traumatic stress disorder), Marcheskie said — a type of “muscle memory” that only occurred when Aria is unconscious.
A switch gets turned on
“The biggest difference after we took Aria off the pharmaceuticals was in her cognitive and personal development ,” Marc he skies aid .“It’ s like you can see lights turning on behind her eyes.”
Aria was working with a speech therapist “for the longest time on animal sounds and she couldn’t get them. Two weeks after she started using the oil, it was like a switch was flipped and she did all of them at once after six months of doing none of them,” said Marcheskie.
There are other factors at work, Marcheskie says. She discovered Aria also has food allergies to “garlic, rosemary, sage and the one that really baffled us, was potatoes.”
Now, eating a completely “clean diet,” with organic, non-processed foods, Aria is seizure-free.
‘Safe Harbor’
Mache skie says the medicine which brought this medical miracle about is significant for several reasons.
It is organic, not from a gene-modified strain; the oil is extracted using carbon dioxide, so there is no alcohol or chemicals used; and its low level of THC, the hallucinogenic element most people think of when they think of marijuana.
Signed by Gov. Tom Wolf in 2016, Pennsylvania’ s medical marijuana law was not in place when Aria first began taking Haleigh’s Hope, but because it’s less than .3 percent THC, it’s considered hemp oil, Marcheskie said.
As a result, “it’s protected under the farmer’s hemp act, and it can be shipped across state lines,” she said.
The bill that was passed in 2016 had a “safe harbor” provision and Marcheskie obtained a safe harbor letter — one of 231 that had been issued as of April — “that I have to carry withme wherever I go.”
“When this all started it seemed like we could never get a break,” said Marcheskie. “We were worried about brain damage with all the seizures.”
When discussion of making medial marijuana legal in Pennsylvania began, Marcheskie watched nervously.
“We were not sure if it would ever happen in Pennsylvania, which is a more conservative state and I said if it didn’t pass, we were going to move,” she said.
Although focal cortical dysplasia is not specifically listed as one of the 17medical conditions for which medical marijuana will legally be prescribed, epilepsy is, which allowed the safe harbor letter to be issued to Marcheskie.
Now, her primary worry is whether Haleigh’s Hope will begr own in Pennsy lvania, or available at the dispensaries nowbeing licensed under the provisions of the new law.
But for the first time in more than three years, Marcheskie and her daughter havemore than worry as a constant companion.
They also have hope.