A chance at childhood
In many ways, Kyleigh Burlingame is a normal six-year-old. She lives in Webster City with her parents, Tiffany and Cory Hoffmann. Kyleigh loves to swing in her backyard, read books and play with Barbie dolls. She enjoys anything to do with Disney princesses, especially “Frozen.” Recently, Kyleigh took part in a dance recital at The Dance Connection in Webster City.
However, Kyleigh struggles with something that not many six-year-olds have to deal with. On Sept. 4, 2011, she was with her mother at a zoo in Davenport. It was there that Kyleigh had her first seizure. After seeing a neurologist, Hoffmann said her daughter failed to respond to several medications before a diagnosis was made.
Kyleigh has Myoclonic-Astatic Epilepsy, or Doose Syndrome. The Doose Syndrome Epilepsy Alliance describes it as “an epilepsy syndrome of early childhood that is often resistant to medication.” She has experienced many kinds of seizures. That includes Tonic-Clonic, or grand mal, seizures where she loses consciousness, Myoclonic seizures where she experiences hard muscle jerks, Absence seizures which cause brief gaps in awareness, and twitching episodes. Hoffmann said she had to learn a lot very quickly to help her daughter.
“There’s not really like a learning curve. You’re thrown into the bullpen and you just kind of figure it out with epilepsy,” Hoffmann said.
In November of 2011, Kyleigh was hospitalized for the first time because Hoffmann couldn’t get her daughter’s seizures under control. In the following months, she was hospitalized several more times. After that, Hoffmann still recorded between 30 and 40 seizures a day. She keeps a meticulous log of Kyleigh’s seizures in a large spiral notebook. It allows Hoffmann and Kyleigh’s doctor to see the effects of her medication, and there are many to note.
Since her diagnosis, Kyleigh has tried about 10 medications. She’s tried so many that her doctor put her back on one drug that she had tried previously to see if it did any good. Kyleigh is also on the Ketogenic Diet. Hoffmann uses a website which is also accessed by a dietitian to log Kyleigh’s diet. Any meals Kyleigh eats have to be approved by a dietitian. Hoffmann weighs the ingredients in each specially made recipe to the gram. That’s because the high-fat, low-carb diet helps control seizures in some people with epilepsy, according to the Epilepsy Foundation. Hoffmann said the diet has reduced her seizures, but not stopped them.
In the event of a major seizure, Hoffmann and Kyleigh’s teacher always have a rescue at hand. It’s a drug that is used to slow her central nervous system. One of those rescue drugs is Midazolam, also known as Versed. Hoffmann said the drug is used by sharpshooters in small amounts to calm their arms. When Kyleigh gets the drug, she receives it in much higher doses to slow the firing of her neurons during a seizure.
“The last time Kyleigh was hospitalized, she had five rounds of Versed, and it was not touching them,” Hoffmann.
Kyleigh’s regular medications also carry a myriad of side effects that require physical, occupational and speech therapy to overcome. For the month of October in 2013, she was out of school because one of her medications gave her Nystagmus. Her eyes uncontrollably bobbed up and down, which would make her dizzy to the point where she would vomit. She could barely eat, walk or talk for the entire month. Hoffman said she was only able to watch television because she was able to lock her eyes by pointing her head down and looking upward.
Another medication she was on for two years, Topamax, prevented her from sweating. Last year, Kyleigh had to have an air conditioner brought into school so she wouldn’t overheat in class. Several of her drugs carry black box warnings, which signify that the medication can cause extreme suicidal thoughts. Other side effects have included kidney stones, hair loss, rashes, bruises, inability to talk and weakness in the joints.
“Or, my favorite, the anti-epileptic drugs that can cause seizures,” Hoffmann said.
That’s the condensed list. What is even more frightening for Hoffmann is that she’s been unable to find long-term studies for many of these medications. She often finds information and support from groups on social media websites.
“This is such a rare condition, it’s not like you get to go to an (Alcoholics Anonymous) meeting or something in your backyard,” Hoffmann said.
On these sites, Hoffmann has heard stories about other children who have taken these drugs. In one instance, she said a child who stopped taking Topamax three years ago is still not able to sweat even in hot weather. Hoffmann said she and other mothers on these social media pages pride themselves on being able to find information pertaining to seizure treatments and medicines. Still, they haven’t been able to find a study on the long-term side effects of Topamax in children.
“I don’t know if any of these drugs are going to fry Kyleigh’s insides by the time she’s 20,” Hoffmann said. “These are medicines that are supposed to help her.”
Relief from cannabis oil
It was through one of those online support groups that Hoffmann first heard about cannabidiol. Also known as CBD, or cannabis oil, the substance is derived from the cannabis plant and has been legally allowed for epilepsy treatment in several states.
According to a 2012 study by the British Epilepsy Association, CBD was shown to reduce the severity, lethality and rate of seizures. Additionally, it said CBD was the most promising cannabis derived drug for clinical use due to its non-psychoactive properties, low toxicity and high tolerability.
One of the women in the group, Heather Jackson, wrote to other members about how CBD had changed her son’s life. According to Hoffmann, Jackson’s son, Zaki, was nine-years-old when he first started taking CBD. Before that, Hoffmann said he had tried 17 medications, steroids and a specialized diet. Zaki wasn’t able to attend public school due to the frequency of his seizures. One day, when the mothers in the support group were talking about treatment options, Jackson mentioned cannabis oil.
But, Hoffmann said she didn’t consider the treatment for Kyleigh at the time. She was on medication six or seven then, Hoffmann said, and Zaki’s situation was far worse. Hoffmann later heard from Jackson after she started treating Zaki with cannabis oil. As Hoffmann tells it, Jackson gave him his first dose and put him down for bed. Jackson slept in another bed in his room and awoke the next morning after an uneventful, seizure-free night.
“I get goosebumps just thinking about it,” Hoffmann said. “It was a really big deal for them.”
As time went on, the group saw a video of Zaki swinging a baseball bat. Then, video of him riding a bike, writing his name and counting. While Hoffmann said these milestones were delayed for Zaki, they were very inspiring. Now, Hoffmann said Zaki has spent the last 19 months seizure-free.
“It’s amazing. It really is,” Hoffman exclaimed. “This is a kid that 17 pharmaceuticals, treatments and drugs couldn’t help. She said, ‘They were at the end of the pharma rope.’ There was nothing left to try.”
Hoffmann was wary of a treatment associated with marijuana at first. But, she learned that CBD doesn’t contain high levels of THC, the main psychoactive compound in cannabis. In essence, she said that Kyleigh would be less “high” on CBD than many other medications.
“A lot of the side effects that the families are reporting that I know are on CBD are: alert children, kids with appetites, kids that will sleep regularly, kids that want to play and kids that are functioning normally. I think that’s the major side effects,” Hoffmann said.
However, Jackson and Zaki live in Colorado where use of CBD is legal. Hoffmann said she has considered moving to obtain the medicine if Kyleigh’s condition gets worse. But, Hoffmann may not have to if a bill is signed into law by Iowa Governor Terry Branstad.
A platform for advocacy
A bill which would allow those with severe epilepsy and a neurologist’s recommendation to possess up to 32 ounces of CBD in Iowa is currently being considered by Branstad. It would still be illegal to sell in the state, so those seeking it in Iowa would have to travel to another state where distribution is legal.
Branstad did not take a side quickly following the bill’s passage through the state legislature. He said he spoke with Utah Governor Gary Herbert and Alabama Governor Robert Bentley about similar laws passed in their states. Branstad is also wary of laws which don’t put adequate controls in place to prevent recreational drug users from using medical marijuana. He talked about those considerations at a town hall meeting held in Webster City on May 8. Hoffmann, who had seen the benefits of CBD, saw a chance to act at the meeting.
“When I found out he was basically coming to my backyard, it was like somebody saying it was time for me to step up and make my voice heard,” she said.
She walked into City Hall where the meeting was to take place that morning with a framed photo of Kyleigh. The photo was taken by a photographer as part of the Kid Captain program with the University of Iowa Children’s Hospital and the Iowa Hawkeyes. It’s a very special photo for Hoffmann.
“It catches the mischievous, the twinkle, the innocence and the naughty all in the same picture and I just needed him to see who he could help,” Hoffmann said. “I said to my dad, ‘I want Kyleigh’s face to be in his mind’s eye every time he hears the word cannabis. I want him to remember that he could help her just by signing his name.”
That’s what Hoffmann told Branstad at the town hall meeting as she held the photo on her lap. She tried to fight back tears as she asked the Governor to sign the bill. Branstad’s response shocked her.
“I always reserve judgment until we see it in its final form, but I think it’s very likely that we will (sign the bill) and I really hope that it does make a difference for your daughter and the other kids,” he said.
Hoffmann was among a few dozen community members who were the first to hear Branstad indicate support for the bill publicly. It was a surreal experience for her as she expected a neutral, political response.
“I remember leaving and saying to Cory, ‘Did you feel like he said he was going to sign it? Because I feel like he just said he was going to sign it,'” Hoffmann said. “I didn’t even trust myself.”
The road ahead
While Branstad said he is likely to sign the bill, he has yet to do so. If signed, the law would take effect on July 1. Then, with a neurologist’s recommendation, Kyleigh could start being treated with CBD.
The signing of the bill does not mean the end of Kyleigh and her family’s hardship. Hoffmann is highly doubtful that her insurance would cover the cost of the CBD. She would also have to travel by car to a state where she could obtain the medicine. Likely, that state would be New Mexico. Hoffmann said she wouldn’t be able to purchase CBD in Colorado as she’s not a resident. The trip would also require her to transport the substance through states where it’s not legal.
“It’s not like this is the easy road, and I don’t think people think about that. People who are against it don’t realize that someone who’s willing to do this has exhausted all the other options,” Hoffmann said.
But, in seeing what the medicine has done for others and seeing her daughter struggle for years with epilepsy, Hoffmann thinks it’s worth a shot.
“We could be normal again, potentially,” Hoffmann said.