Lilah’s Story: A Family’s Journey

For five minutes Lilah Waters sat limp, eyes twitching and convulsing, on her mother’s lap just six months after being born on January 8, 2014. Her parents, Rain and Sam Waters, tried to snap her out of whatever was happening to their daughter. They knew something wasn’t right. Before this, Lilah was a perfectly healthy little girl. Before this, the Waters would have never guessed that this would soon come to be their new normal.

Two weeks after, Sam and Rian experienced Lilah’s first seizure, it happened again. They were referred to a neurologist at UC Davis, but were unable to get an appointment for seven months. During this time, Lilah had six more seizures.  

With each painful seizure, Lilah regressed further and further from her developing milestones. Before the seizures, she was able to roll over but lost the ability for about five months. She received an Electroencephalogram (EEG) Test, which is used to detect abnormalities through electrical activity in the brain, and still they were left with little to no answers.

For a period after, her usual seizures stopped but were replaced with violent episodes where she would twist and contort her body in abnormal positions “as if she couldn’t feel anything,” said the Waters. These attacks would last anywhere from five minutes to three hours.

In June 2015, Lilah’s 18 month checkup was due, which meant she would receive her vaccines. Shortly after they visited the doctors, she started experiencing hundreds of Myoclonic Seizures (short, shock-like jerks of a muscle or group of muscles). From there on, Sam and Rian saw Lilah slowly deteriorating. They felt hopeless, and asked themselves ‘what’s the next step?’

Lilah began to have up to 300 seizures per day and became unable to play, crawl or even smile like she used too.

“To me, it was almost like a dead fish — she couldn’t play, she just cried or slept or had seizures,” said Rian.

Rian and Sam tried to reach out for help but weren’t able to get an appointment to see her neurologist until that August. After 10 excruciating days, the Waters took matters into their own hands: they got Lilah a referral for her own medical cannabis card so they could try something that the doctors would have never suggested.

Within minutes they saw the change in Lilah. She was smiling again and had enough energy to play. Her seizures didn’t stop completely, but drastically diminished from over 300 a day to 30 on a good day.

“As soon as she had CBD she was actually laughing and smiling and had interest in playing with her toys. It was pretty amazing because she would literally just be screaming or she would just be lying on her side having seizures, [but] now she’s excited and crawling. She wasn’t nearly as miserable, it was pretty amazing to see it happen,” said the Waters.

Her biggest triggers are being tired and hungry. Lilah’s sleeping schedule was inconsistent and everyday seemed to be a battle. The family spent most of their days at home trying to make life as comfortable for her as possible.

When they finally saw a neurologist, they explained Lilah’s new treatment. The doctor ordered another EEG for the end of September and requested for the Waters to withhold her medication the morning of the tests in order to properly record seizure activity.

Two hours into the exam, Lilah had more than 100 seizures so the doctor ordered a full work-up (which consisted of an MRI, MRS, a Lumbar puncture and blood work). Shortly after the tests were completed, the doctor told Rian and Sam that something interesting came back from the results and their neurologist would more than likely start Lilah on a Ketogenic Diet (low-carb, high-fat diet) but said nothing else.

Thanks to Harborside Health Center in Oakland, California, the Waters were able to acquire the CBD-based oil, “Jayden’s Juice.” In September, Lilah’s seizure count dropped from 30-70 per day to about 10. In November, she even had some seizure free days and began to lift herself up from sit-to-stand positions for the first time.

In December 2015, the family finally had the appointment to hear the results from the tests they ran. The Lumbar puncture (taking fluid from the spine in the lower back through a hollow needle) showed that Lilah likely had Glucose Transporter Type 1 Deficiency Syndrome (GLUT1-DS for short). The Neurologist told them that the hospital had no information on this syndrome and offered them the advice of checking Google once they got home.

“It was almost like [Lilah] wasn’t a priority once they found out she was on cannabis and we weren’t going to give her a bunch of pharmaceuticals,” said Sam.

The neurologist did, however, make an appointment for Lilah to start the Ketogenic Diet in February 2016, which to this day is the only known treatment for dealing with GLUT1-DS aside from therapy sessions.  

Once home, Sam and Rian were shocked to learn that there are only a couple of hundred confirmed cases of GLUT1-DS since it’s discovered in 1991. Because of its rarity, there is not much information on the disease.

“GLUT1 makes it so the brain has a hard time using sugar for energy therefore the brain is always starving and that ends up causing seizures and other issues,” said Rian, “so her body can’t process the glucose at all which is what all of our bodies run off of,” added Sam. The only known treatment is the Ketogenic Diet because it forces the body to process fat into energy rather than needing sugar to do so.

As Lilah turned two, her molars grew in which triggered the seizures to increase again. Harbor Side humbly provided the Waters with THCA, an inactivated form of THC that doesn’t get you high. With just two drops the results were miraculous, like the first time she was given CBD oil.cbd_oil-900x575

“She was happy and smiling and could eat again, it was amazing,” said Rian and Sam.

Excited to switch Lilah to Ketosis (the process in which the body does not have enough glucose for energy. Stored fats are broken down for energy instead, resulting in a build-up of acids called ketones within the body), they went into February’s appointment disappointed to be informed that they did not have the proper dietician. Again, they were told they would have to wait a few months to start the diet.

“It was completely unprofessional,” said the Waters.

Upset, the family began to look for a new hospital. Luckily they found an outpatient clinic with an appointment as early as February 12. The diet proved to help.

With the help of the Ketogenic Diet, Jayden’s Juice CBD and THCA oil, Lilah’s seizures have diminished, sometimes going days or weeks without any.

Today she sits in front of me, soaking up the Trinidad, California sun and enjoying the cool summer breeze at Moonstone Beach. She’s quiet and makes little to no eye contact. Rian and Sam sit around Lilah with their dog Luna as we chat about this intriguing little girl in front of me. She clutches the dark, sandy grains of the beach and strains it from one hand into the other.

“Without cannabis we wouldn’t be able to be at this right now,” said Rian. “We literally couldn’t leave the house, we would just sit in the house all day long and now she can go out to the beach or go to the park or play disc golf or we can bring her on the play set. We definitely feel that it saved her life,” added Sam.

Seeing her today, you would never imagine the long journey they’ve endured. She is sweet and fragile but curious about everything. Her eyes seem to paint a picture of curiosity that is playing and unfolding in her head. Lilah is limited to what she can do because of the delays in her developmental capacity but that doesn’t stop her from being a happy child.

What Rian and Sam have taken from this lifelong battle is that nobody is going to care about your child as much as you will, so don’t be afraid to be their number one advocate. “If you think something is wrong or that they need something like CBD you should definitely go out and do it regardless of what other people’s opinions are because had we not put her on the CBD cannabis oil who knows how she would be now or if she would even be here,” said Sam.

Ideally the family would one day like to grow their own cannabis in order to know exactly what’s going into her medication and keep it close to organic as possible (just like her diet).

Their new normal looks bright! Families like Lilah’s who also suffers from seizures (see Ryan’s story in our May 2016 issue) are changing the way we see medicinal cannabis. With so many cases coming to light thanks to the courageous acts of the family, we can slowly start breaking down the stigmatized walls of what cannabis can and will be used for in the future.

Written by Erick Montano

Emerald contributor since March 2012

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