Paige could have as many as 100 seizures a day. Severe epilepsy was destroying her physically and mentally until the family began to research and prepare a carefully tested regiment of Cannabis oil — and the proof is in the results: this little girl hasn’t suffered a seizure in nearly three months.
By Wes Abney, Northwest Leaf Editor | Photos by Daniel Berman
Losing a child is every parent’s fear and when pharmaceuticals were failing Anne Malone’s then 2-year-old daughter, Paige, she decided to take medicine out of pharmaceutical control and into nature’s.
Moving to a new home is usually a blessing, but a new change became a nightmare for this Bellingham family, who were exposed to harmful chemicals from methamphetamine contamination in their rental property.
Within months, their healthy and happy daughter was suffering more than 100 seizures per day. They began to lose their daughter, both to the neurological effects of the seizures and the heavy side effects of pharmaceutical therapies.
After years of medications and countless hospital trips, modern medical treatments were exhausted and the chances of Paige having a normal childhood dwindled each day. Faced with the decision of a lifetime, Anne took Paige to a naturopath that would authorize medical Cannabis treatments.
Today, Paige is on the road to recovery thanks to Full Extract Cannabis Oil. As of print time, she was on her 86th seizure-free day. Without medical Cannabis and the support system of local providers, the recovery would have been impossible.
“I want to tell everyone that will listen to this, I don’t want anyone to have to go through what we did,” Anne said, reflecting.
“What if we had started this in the beginning? How different would [things] be?”
A New Move
June 13, 2013 started out as a normal day for the Malone family. They moved into a newer and larger house two months before, a duplex with granite countertops, hardwood floors and a big backyard. They were happy. Anne had started working after being a stay-at-home mom since Paige’s birth.
That afternoon, Paige fell, as often happens with kids, but she was also acting abnormally and having seizure-like conditions. Anne’s husband, Patrick, called her, concerned and scared, and immediately took Paige to the local hospital. The hospital said it was normal for 2-year-olds to fall and connected the seizure to the impact. They were sent home without treatment.
The next day, Paige had four grand mal seizures, which are now referred to as tonic-clonic seizures. Lasting up to four minutes, the seizures caused Paige’s eyes to roll back into her head with body convulsions, drooling, impaired breathing and intense physical pain. The family rushed her back to the hospital, where tests revealed nothing. She was sent home, promptly had two more seizures and was driven via ambulance back to the hospital for her first long-term 5-day stay.
“We started noticing at that time that she was doing other funny things. She was falling a lot, which was weird and nobody knew what was going on. It was a type of seizure: myoclonic and drop seizures,” Anne explained. “Once again, we are discharged and she started having seizures every day.
We went to Seattle Children’s for a week the first time, got her on meds that seemed to take away the big seizures, but there was all this other stuff happening like her falling down.”
While the medicine initially helped, it took a turn, Anne said, as Paige developed other serious side effects worse than the original condition.
“We noticed her hands and arms would jerk and neck jerk — a third type of seizure — and we were sent home for months and months and she was still having seizures and losing developmental milestones. She was not talking as much, sleeping more and clearly in a lot of pain.”
Soon, Paige developed a fourth seizure type: complex partial seizures, which caused neurons in her brain to essentially freeze. She would stare off into space for minutes at a time, unresponsive, until her brain began functioning again. In all, Paige was diagnosed with suffering from five major types of seizures, although when she began treatment, she was only experiencing one.
It became a seemingly endless cycle of new medications or upped dosages, brief periods of stability followed by increased symptoms and worsening conditions.
“We were seeing neurology teams in Seattle and would go through times where she would have less seizures — by less, meaning 20 a day — and then times where it would get worse, lose weight, meds too high in bloodstream and more seizures. [She was] admitted in September 2014 because Paige started sleeping 17 hours a day. When awake, she was in a constant seizure, couldn’t sleep or sit on a couch. It was like seizure or sleep.”
Failed Treatments and a Search For Answers
The harsh reality is that the world keeps moving outside hospital walls. Anne had to stop working to become a full-time caregiver for Paige and the family welcomed a new son in 2014. They depended on family and friends to help with childcare so that Patrick could work, all while dealing with Paige’s worsening condition.
Anne gave up breastfeeding her son to be with Paige, and the conflict between her maternal responsibilities was difficult. Paige couldn’t walk, and, with her falls, she had to wear a helmet and chinstrap at all times. She had to be carried. Paige was on countless medications and doctors feared the end was in sight.
“We had other family helping with our baby, my husband working because I can’t, and me being at the hospital constantly. It was very hard. Hard for him not to be with us when needed, hard for me being stuck in a hospital,” she said.
“You feel like you don’t have any control. Calling nurses, constantly putting things in her body. She’d be almost comatose from being drugged up on Xanax and benzos and Ativan.”
The pharmaceuticals had a health effect that was worse than her original symptoms, and the family thought they could do nothing.
“The drugs truly only made things worse. They took away her ability to learn, her ability to speak, all of her physical capabilities, and created four more seizure types. Before pharmaceuticals, she only had the one type, that’s what these meds do, antiepileptic drugs, they often cause more seizures.”
It was around this time that the landlord of their property started having neurological problems, and was sent to a doctor who suspected environmental causes. Although Paige had seen countless specialists, it was never considered that the cause of her seizures was in their home.
The landlord’s doctor had the house tested by the health department, and the news was stunning. Chemical contaminants related to producing and using methamphetamine were 6,000 percent higher than safe levels. The last residents had rendered their home unsafe before they ever moved in.
“When we got that call, we left. The only things we could take with us were our clothes. Had to leave beds, toys, books, dressers, kitchen, literally, we lost everything. My wedding dress, I gave birth to my son on the bed we had, everything of their baby books, family portraits, there’s meth inside even pictures. It lives in wood surfaces; the house had hardwood floors, but it was in the ceiling and in the walls. It was everywhere.”
Researching online, Anne discovered that the previous occupants of the house were in prison on charges of manufacturing methamphetamine. The house had been sold to their landlord without notice. After the Malones left, the landlord paid to again have the place decontaminated, and it was resold later that year. Another family settled in.
“I wrote a letter to the family that lives there, telling them the situation. It really makes me mad. Really mad,” Anne said. “It makes me feel like other people are really selfish and that they understand they bought a house, lot of money and all that, but I would give up a house to have my brain be like it was before we moved there. To think another child might go through that makes me want to cry.”
While meth houses are conventionally destroyed and quarantined, Washington state law does not require this. There are no federal standards for decontaminating or handling the houses either. Washington certifies decontamination companies, but disclosure is not required for sale of a home.
According to the Minnesota Department of Health, producing a pound of meth leaves behind 5 to 7 pounds of chemical waste. The residue can cause many health problems including breathing issues, rashes, headaches, nausea and dizziness. With enough exposure, liver and kidney damage, neurological problems and increased risk of cancer.
Finding Cannabis
With hope and Western medical resources dwindling, Anne used what little free time she had to research alternative epilepsy treatments and decided to try medical Cannabis.
“I found this doctor through a parenting group on Facebook for children with epilepsy, and I went in and said, ‘I’m sick and tired of pharmaceuticals and doctors and I’ve been doing research, can you please help me try Cannabis with my child? I can’t stand to watch her die in front of my eyes.’”
Paige was authorized to begin medical Cannabis in January of 2015 and Anne immediately began searching through medical collectives in Whatcom County. The first three wouldn’t allow her to bring Paige into the facility, but on her fourth try, she met the patients behind Grassroots Collective.
“I don’t think we would be where we are without Grassroots. They are generous, good, compassionate people who truly care about my child — can’t say that about a lot of doctors. And they care about all patients, and only selling meds that are clean and good, the compassion they have really just blew me away. I don’t know how to grow; there’s no way I could have done this if I couldn’t have bought someone else’s flowers.”
Using high-CBD flower from the collective, Anne made an ethanol extraction called Full Extract Cannabis Oil (FECO) and infused it with coconut oil. Each batch of FECO is tested for potency and the naturopath created a formula that calculates dosage based on test results. The end product medicine is a mildly sweet liquid coconut oil with a slight Cannabis flavor, and it was almost a pure cannabidiol (CBD) extract. CBD is a chemical found in Cannabis that has been found to successfully treat hundreds of conditions, including epilepsy.
They started FECO therapy on March 17, 2015, and on the first day, Paige had fewer seizures. By the end of the first month, her tonic-clonic seizures had disappeared. The family was elated, and continued the medicine. After a few months, the medicine seemed less effective and her seizures returned. They went back to the naturopath, who recommended adding THC to the medication. While THC is known culturally for the psychoactive effects of Cannabis, it also has anti-cancer and anti-seizure properties, and is effective for most medical conditions CBD is used for.
“People talk about CBD and being afraid of psychoactive effects, and I was like, I’m pretty sure I see her high every day. Actually high from meds that a doctor is giving us. She looks drunk with dilated pupils, is drowsy and can’t walk well and there’s warning labels on all of them. I felt THC was a lot less of a risk.”
They started Paige on a minimal dose of 2.5mg of THC a day in June, and her seizures went away again. In July, she had her first streak of seizure-free days, 33, and the family began seeing the daughter they had thought lost. Paige was more cognitively present, laughing, playing with her brother and relearning how to walk and do normal things she couldn’t for almost two years.
“It was kind of terrifying, actually, for me. I was waiting. This is great and I love this, but when’s it going to happen again? When will we go back to the hospital? For a long time, I didn’t allow myself to be hopeful. I didn’t want to set myself up for more heartbreak.”
While Paige continued to have great results from Cannabis, finding the correct dosage was difficult. She would have a period of great results, build a tolerance and have symptoms return.
In October of 2015, the parents switched Paige to an oil made with a 4-1 CBD-THC ratio, the highest dosage of THC they tested. Apart from a few flare-ups, Paige is the best she has ever been.
Today, Paige is enrolled in a special education preschool program, and preparing for entry into regular kindergarten this fall. Anne credits Cannabis for saving her daughter and her family.
“This is truly a miracle for my husband and I, that I’m making this medicine in the kitchen of our home, with a plant and some coconut oil,” Anne said. “And now, she is looking at going to kindergarten like a normal child. No, no, no, never in a million years did I expect that.”
With her daughter stable and thriving, Anne wants to spread the Cannabis freedom message.
“Put aside what people are telling you to do with your child and think about what you will do with your child,” Anne said. “All you need is one doctor and you can do it! Never stop broadening your education, and never give up hope.”
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Originally published in March 2016 Northwest Leaf
http://issuu.com/nwleaf/docs/northwestleafmarch2016
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