May 27 2015 . 12 min read
A HANDFUL OF HOPE
A HANDFUL OF HOPE
One family’s five-year journey to find their child relief from the ravaging effects of nightly seizures.
One family’s five-year journey to find their child relief from the ravaging effects of nightly seizures.
[dropcap]S[/dropcap]ometimes we find hope in places we don't expect it to be. This is the story of one family's five-year journey to find their child relief from the ravaging effects of nightly seizures. From visiting the finest pediatric neurologists in the country to taking a chance on a plant, Jon and Sandi Spadafora stopped at nothing to find a way to make their daughter, Avery, whole again. [quote]Although Avery Spadafora was born five weeks before her due date in November 2008, her parents had no indication that she was going to be anything other than a perfectly normal, healthy child.[/quote] "We brought her home from the hospital as a very well behaved baby who appeared to be happy and healthy," explains Avery's father, Jon Spadafora. "After getting her home, we realized that she slept a lot more than our other children had but, with two older children in the house, we understood that babies are unique and we didn't worry about it." However, as the months went by, Jon and Sandi Spadafora began to grow concerned as Avery missed key developmental milestones. By the time Avery was eight months old, the Las Vegas couple was getting used to spending hours meeting with various specialists who were trying to determine what was wrong with their little girl. But before they found an answer, when Avery was 18 months old, she had her first seizure. "She was taking a nap in her stroller during our Fourth of July party and to say that it took us by surprise is an understatement," says Jon. [caption id="attachment_141" align="alignright" width="614"]Her first seizure. "Perhaps the worst of all was that we were watching milestones that Avery was gaining – the ability to play peek-a-boo or making a 'mmmm' sound when she wanted her mom – disappear. We were concerned that the seizures were the reasons she seemed to lose these things that she worked very hard to gain.[/caption] In their quest to help Avery, the Spadaforas took her to see the best neurologists in the country, visiting Boston Children's, Texas Children's, Colorado Children's, and UCLA. "My wife took it upon herself to learn what was causing Avery's seizures and orchestrated visits to some of the best pediatric neurologists around the country in the hope that one of them would take a special interest in our child and help us to understand what was happening so that we could treat and help her," explains Jon. "We were always nervous as we walked into these gigantic research hospitals, hoping that the answer was at the top of the elevator. We always left with the same disappointed feeling after we watched our daughter being poked with needles, enduring overnight EEGs, sleep studies, MRIs, and what seemed like endless tests, only to be told that her condition did not fit the definition of any the doctor was familiar with." While looking for answers, a geneticist at UCLA introduced the Spadaforas to Dr. Shaun Hussain, a pediatric epilepsy specialist at UCLA. Not liking the medical options available in Las Vegas, the Spadaforas chose Dr. Hussain to become Avery's neurologist and guide the family through the maze of available seizure medications. "Without a clear diagnosis on the type of seizures that Avery was experiencing, it was challenging for him to identify the right medicine to treat them. So we tried them all. Some helped for a short period of time, some were promising and some were scary, but at the end of the day none of them were the answer," Jon remembers. "It was increasingly frustrating to leave her appointments without answers as we watched the frequency and intensity of her nighttime seizures increase." Avery would have on average between one and four seizures per night with some lasting 45 seconds and others lasting up to 45 minutes. "The stress on our family seemed to increase each month, as Avery, my wife, and I failed to sleep for entire nights at a time. They got so bad that Avery's siblings would hear her and wake up to sit with my wife or I as we tried to calm her down. [accordion title='Continue Reading' open='false'] [caption id="attachment_141" align="alignleft" width="614"]Avery would have on average between one and four seizures per night[/caption]"Perhaps the worst of all was that we were watching milestones that Avery was gaining -- the ability to play peek-a-boo or making a ‘mmmm' sound when she wanted her mom -- disappear. We were concerned that the seizures were the reasons she seemed to lose these things that she worked very hard to gain." In April 2014, Dr. Hussain told the Spadaforas that they had run through the majority of the seizure medications that he could recommend and there were only a few options left that could help Avery. He gave them three choices: a Ketogenic diet, a lobotomy or a new experimental drug called Fycompa that was coming onto the market. The Ketogenic diet would have required a feeding tube and hospitalization to implement so "obviously that is very challenging to stick with," offers Jon. As for the lobotomy that would potentially cut out the part of Avery's brain that caused the seizures, Jon was adamant. "Sandi and I both felt like that was a definite no from the get-go." Having just seen a news story about a family who used a form of medicinal cannabis called CBD oil with much success, Sandi asked Dr. Hussain's opinion on it and whether it was a possibility he would consider. (Cannabidiol (CBD) is one of over 60 cannabis compounds that is well suited as an anti-spasmodic and, unlike THC, does not cause a high.) "He was very honest and told us that while UCLA would not allow him to recommend it; he believed it might be an option to consider after the experimental drug," Jon recalls. "Sandi was pushing for it (the CBD oil) but I was more skeptical. My only concern was there was not a tremendous amount of research on either side." [quote align="right"]Upon leaving UCLA, the couple decided to try the experimental drug Dr. Hussain suggested, and if that didn't work, they would find a way to start using CBD oil.[/quote] For the next couple of months Avery took Fycompa. "It never really worked to control the episodes, but we saw enough of a reduction in the frequency and intensity that it felt like a break. Then sometime during the middle of the summer they came back with a vengeance," Jon summarizes Avery's experience. The failure of Fycompa was the impetus for Sandi and Jon to start the process of looking for CBD oil to treat Avery's epilepsy. Unfortunately for the Spadaforas, there were some pretty big logistical challenges for them to overcome. First, they lived in Las Vegas where medicinal cannabis was not available. Next, CBD oil was almost impossible to get as very few places were actually selling it. Finally, they didn't know if it would actually work. In August 2014, they began their quest for CBD oil with not much more than determination, resourcefulness and luck -- taking a road trip to visit Sandi's sister in Denver where they hoped to secure Avery's red card which is required for a minor to use medicinal cannabis in Colorado. Remembering the news story she had seen on CBD oil, Sandi recalled the doctor's name in Colorado who was mentioned by CNN's Chief Medical Correspondent Sanjay Gupta, searched for him on the internet and called him. Although he wasn't available, Dr. Shackelford's receptionist advised Sandi that she needed to get a Colorado driver's license and appointments with two doctors who could give her prescriptions for medicinal cannabis. [caption id="attachment_141" align="alignright" width="614"]Avery surrounded by her siblings.[/caption] Jon is self-employed so he was able to cut himself a check using a Colorado address to get his driver's license. Then it was down the rabbit hole to doctor's offices, both professional and unprofessional, that could sign off on Avery's need for CBD oil. "The first doctor's office was as we hoped it would be, professional and filled with people who really wanted to help people that the system has dubbed helpless," says Jon. "The next was a nightmare, operating out of what appeared to be an abandoned office building, with a waiting room full of all the characters from a pamphlet distributed by a politician against medical marijuana. We left the appointment confused and feeling like we were making a mistake to let our six-year-old daughter take anything prescribed by this place." In spite of their misgivings, the Spadaforas soldiered on to their next stop – a cultivator that Dr. Shackelford had recommended to them who might be able to fill Avery's prescription. "We had an appointment with the H.O.P.E. Foundation shortly afterward, and decided to keep it, since we had already come so far. Even though we were not sure what to think when the GPS gave us the address of a home, we made the trek to Longmont," explains Jon of the cultivator. The couple had opted for a medicine created by Jason Cranford, founder of the Flowering H.O.P.E. Foundation, called Haleigh's Hope over the more well-known Charlotte's Web, made popular by Sanjay Gupta's "Weed" documentary on CNN, because it had a lengthy waiting list of 8,000 people. (Editor's note: As of February 2015, there was no longer a wait list for Charlotte's Web hemp oil.) The team at Flowering H.O.P.E. Foundation explained the process of receiving and administering the medicine, showed them Jason's lab and answered all of the Spadafora's questions. "We weren't super comfortable with the idea of the CBD oil but we had just gone through a really rough summer where our daughter was having some of her worst episodes yet. We had gotten to the point where we willing to try anything," explains Jon. [quote]But there was one small hitch. "They were out of medicine. They were still getting started so we left the house that day with no medicine," recalls Sandi, who felt utterly defeated.[/quote] "As you can imagine, it was a very emotional drive home. Sandi was so upset and during that drive we decided to go ahead and rent a home and move to Colorado. We didn't feel we had a choice," explains Jon of listing their Las Vegas home of the last seven years, which they had never expected to leave, and packing up their family and uprooting them. "Three weeks later we pulled into Colorado -- full of hope but not expecting a change as nothing had really worked for us yet." And then their luck changed. Although they were inundated with requests for Haleigh's Hope, the Flowering H.O.P.E. Foundation eventually had Avery's medicine ready for her. And true to its name, the CBD oil called Haleigh's Hope brought the Spadafora's some. "With butterflies in our stomachs, we gave her the first dose," Jon explains of the CBD oil he and Sandi put under Avery's tongue for the first time. "That night she had a seizure but it seemed to be less intense than they had been. We continued to give her the medicine and we were shocked when all of a sudden she went 18 nights without a seizure. We hadn't had 18 nights of sleep in a row since she had that first seizure, five years ago." "She's a different kid on this medicine," interjects Sandi. "Before she slept till noon every day even though she went to bed at 8 p.m. Now she's up at 7:45 a.m. every day and doesn't take naps." Jon finishes, "She has occasional episodes, but never with the frequency or intensity that she used to. In fact, it is now more common to have her go all night without an issue than it is to have a night with seizures. More importantly, we are watching her personality develop and watching milestones come back to her." [caption id="attachment_141" align="alignleft" width="614"]Avery surrounded by her siblings.[/caption] To this day, Avery does not have a technical diagnosis. And, if he had it to do over again, Jon would have handled pursuing Avery's diagnosis differently. "In retrospect I would have abandoned trying to find out what the issue was and just treated the symptoms. We would have concentrated on finding out a way to make the seizures stop rather than get a diagnosis." As for Sandi, she is more pro-marijuana. "I would have moved here (to Colorado) five years ago," she relays with a laugh. "I started trying to get here about five months before we made it happen. For those six months of her having horrific seizures…if we could have known the answer was in Colorado we would have been here." As for parents who are on the fence and can't decide if CBD oil is the way to go, Sandi is adamant. "Oh, try it, absolutely," Sandi enthusiastically urges. "I thought back to all of these drugs that they were trying with her and as far as the list of side effects, some were horrible, and I thought how could taking medicinal cannabis be any worse than some of the things we have given her before." Jon agrees. "I think that's why we were so comfortable with doing it (trying Haleigh's Hope) because the doctors couldn't even tell us what her diagnosis was so why shouldn't we give it a try?" [/accordion]