Amylea Nunez is now a 20-month old child and by all accounts, she is a happy and healthy baby.
But not long ago, she was fighting for her life as a newborn infant while her doctors debated with her parents about whether she should be given access to medical cannabis or not.
You see, Amylea was born in Albuquerque, New Mexico, in December 2015 and almost immediately began presenting with seizures. When the doctors in New Mexico had exhausted all of their options and could no longer help, Amylea was transported to the Children’s Hospital Colorado where she was treated by a team of pediatric neurologists. Under this team, Amylea was diagnosed with a rare form of epilepsy (although they didn’t know the exact type) that was causing her to have up to 15 seizures a day.
Some of the episodes would last up to 45 minutes while one of the worst episodes lasted an hour. Her condition was so fragile that her heart stopped on two separate occasions and each time she needed to be revived. The doctors prescribed her 8 different medications but none of them seemed to work and were causing long term damage to her liver and other organs.
Finally, after watching their infant daughter waste away while taking potent epilepsy drugs, her parents Nicole and Ernie Nunez decided to give her cannabidiol or CBD. More specifically, they decided to give her Charlotte’s Web CBD oil which was developed by the Stanley Brothers in Colorado and was named after another child who had found great success with treating her intractable seizures, Charlotte Figi.
Amylea Nunez sets the record for being the youngest patient treated with medical cannabis
While she was still in the hospital, Amylea’s parents fought with doctors to start Amylea on CBD treatment.
You see, although Children’s Hospital Colorado is a strong supporter of clinical trials and rigorous scientific research on the safety and efficacy of medical cannabis, it was (and still is) against their policy to prescribe or recommend medical marijuana to any of their patients – let alone allow a patient to self medicate.
But in Amylea’s case, the doctors relented and gave them the go-ahead, with the explicit understanding that the hospital would not be involved in administering the medication.
Only the parents would be allowed to administer the drug, and at just 2-months old, Amylea became the first and the youngest patient to ever receive CBD treatment at the hospital. She also became the youngest patient to be a subject in an observational case study as well. This ongoing study looks at how children react to CBD and also looks at CBD’s possible long-term side effects.
Children’s Hospital Colorado released this statement regarding Amylea:
Children’s Hospital Colorado does NOT prescribe or recommend medical marijuana.
We don’t yet have the science to fully understand medical marijuana and how it impacts children, which is why Children’s Colorado supports research to determine the safety and efficacy of medical marijuana. Children’s Colorado has a CDPHE-funded medical marijuana study that is strictly observational to assess response rates, changes in behavior and side effects of artisanal marijuana products on children with severe epilepsy. Enrollment starts at one-month of age. This study is for families who choose to provide artisanal marijuana to their children for epilepsy, and Children’s Colorado providers do NOT administer the marijuana.
Medical providers do not know the long-term effects that marijuana will have on learning, memory and behavior, especially in infants and young children. We have more questions than answers. This is a tough issue, especially in Colorado where families have easier access to medical marijuana.
If a family makes the tough decision to explore the use of medical marijuana, Children’s Colorado will continue to provide care to these children. Most of these families have children with very complex medical needs, and Children’s Colorado wants to continue to see them, help to monitor them and be on the lookout for potential adverse side effects.
Whether it was against their policy or not, the hospital made the right decision.
Seizure free and back in Albuquerque
Since beginning the CBD treatment, Amylea has become seizure free – although her parents switched her medication from Charlotte’s Web to another CBD medication called Haleigh’s Hope. Haleigh’s Hope was named after Haleigh Cox, a child in Georgia who suffered from intractable seizures but found CBD to be an effective treatment.
Amylea has since moved back to Albuquerque and has reunited with her siblings. Her parents have also become advocates for epilepsy patients to gain better access to potentially life-saving drugs.
Amylea’s journey is yet another amazing story that adds to the long list of children who have found success in treating epileptic seizures through the use of CBD.