When Erin Miller first brought Abram home from the hospital, she knew something was wrong. Her newborn son was inconsolable and screaming constantly, however his doctors were not concerned about Abram’s behavior.
At 10 months old, Abram got sick, which led him to seeing a new pediatrician who instantly noticed something wasn’t right. Abram was referred to a neurologist, who found a cystic pineal tumor. This type of tumor is dangerously located on Abram’s pineal gland in the middle of his brain.
Erin explained, “The brain surgery is so dangerous, they wanted to wait for worsening neurological symptoms before they would perform surgery. We were warned the tumor would cause seizures, so when Abram started having seizures, we thought it was because of this mass.”
“Right after the very first dose, he stopped signing ‘ouch.’ For the two weeks after that he had maybe two absent seizures where he would just kind of stare off, and then they were gone. He hasn’t had a physical seizure ever since.”
Abram’s seizures started around his first birthday in June 2014. By October, his seizures took a turn for the worse. Abram was diagnosed with a generalized seizure disorder and epilepsy, and he was prescribed Klonopin.
Erin said, “The first month on Klonopin was awesome. We were really excited because he fed himself for the first time with a spoon. It seemed like it was going in the right direction. But then suddenly he started having more seizures, different kinds of seizures, worsening seizures, and the more the seizures came, the more Klonopin they would give him.”
At just two years old, Abram was taking more Klonopin than most adults are prescribed. Erin recalled, “I found out later that Klonopin had never been tested or approved for kids under 18.”
While Abram was on Klonopin, he lost his words and ability to walk or crawl. His symptoms worsened over time, and Erin brought him back into the ER. The following day, his regular neurologist admitted that Abram’s case was over his head, and the family would be referred elsewhere.
Before Abram was moved to a level 4 epilepsy hospital, Erin recalls the neurologist’s life-saving recommendation, “Our neurologist came in and was whispering, ‘You guys need to go to Colorado, and you need to try cannabis.’ Even though I was really angry with him for not knowing how to help Abram when I felt like he should have been helping, I’m so grateful for him telling us to try cannabis oil, because that is exactly what helped my child.”
“Since they’ve started cannabis oil one year ago, Abram has been weaned off three-fourths of Benzodiazepines, and they have one milliliter of Klonopin to wean.”
Once they were transferred to a specialized hospital in Minnesota, Erin hesitantly inquired about cannabis for her son. Instead, doctors prescribed Abram with Keppra. Abram’s side effects were terrible and B6 was added. This resulted in 14 days straight of Abram screaming constantly and even ripping his hair out.
Erin realized cannabis oil might be Abram’s only hope. Although CBD oil is legal for medicinal use in Iowa, the state doesn’t have dispensaries. Erin explained, “My only choice was hemp that could be shipped. I ordered Charlotte’s Web Oil. The first day I finally decided to do it, he was hitting his head and signing ‘ouch.’ Right after the very first dose, he stopped signing ‘ouch.’ For the two weeks after that he had maybe two absent seizures where he would just kind of stare off, and then they were gone. He hasn’t had a physical seizure ever since.” June 27th marks Abram’s one-year of being seizure free.
Around Christmas Abram switched strains to Hayley’s Hope out of Colorado. After this change, he started giving kisses for the first time. Abram also started laughing, giggling and making more sounds. Since they’ve started cannabis oil one year ago, Abram has been weaned off three-fourths of Benzodiazepines, and they have one milliliter of Klonopin to wean.
“We actually saw his neurologist last Monday, and I told him, ‘I don’t want him on this Benzo anymore. I want to see what happens if we take him off. I feel like that is what took his words. Maybe if we take him off of it, maybe he’ll get his words back.’ Crazy enough, his neurologist agreed that in November, once he hits the 18 months seizure-free mark, he is willing to have my son on cannabis only.”
Abram’s “official” diagnosis is UBE2A X-Linked Syndromic Intellectual Disability or UBE2A Syndrome for short. Although this condition is super rare, as the Millers are only the third family in the world to have this particular spontaneous gene mutation, Abram’s story is making a huge difference in the lives of countless others.
Erin is part of a group called concerned Iowans 4 Medical Cannabis, which gives Erin the opportunity to advocate for all children and adults in need of medical cannabis.