Nico and Bebo's story
Nico and Bebo
Our sons Nicolas and Byron were four months old when Nico suddenly started making a repetitive gesture with his right arm that did not look voluntary. I put my hand on his arm and felt it keep pulsing, and I knew something was wrong. Our pediatrician told us to go to Shady Grove Hospital, which had a Pediatric Neurologist on call. The emergency room doctors took bloodwork and did a spinal tap, but found nothing and asked if I wanted to go home or take more tests. Something told me to push on, and they gave him a CAT scan of the brain. The person who told me the results was very sad and told me that Nico’s brain was deformed. Then they did an MRI and we waited for the results for the better part of a day. My father and I were sitting in a lounge and I told him, “they’ve kept us for a long time, and they’re not telling us anything. It’s going to be bad.” We sat in silence. The doctor finally came and took my husband and me to a room with a small computer. He showed us the MRI of Nico’s brain. It looked smooth in most places where undulations should be. The doctor used words like “subcortical band heteropia” and “lissencephaly”. He said not to look too far into the future. I said, “Oh, God, he has a twin.” My husband and I wept in each other’s arms, and the nurse wept.
We had genetic testing done that showed Nicolas has Miller-Dieker Syndrome. I read online that it has a life expectancy of two years. Eventually Bebo was also tested and he had the same condition. The boys had a lot of seizures in the beginning- infantile spasms that would last up to 12 minutes at a time. Eventually they lost their personalities and would stare flatly without emotion. I contacted the best-known specialist for the disorder and asked if he would recommend anyone for the boys. That’s how we started at Children’s National Medical Center. Our neurologist there put the boys on medicines that would control the seizures sometimes for months at a time. Those were relatively good times, and their personalities returned. But the seizures always came back. Every time one of the boys learned something he would forget it. They had some head control at four months but lost it. They said words like “hello” and “love”. Nico even said “I luh oo” once. But those moments had to be enjoyed while they happened because the seizures would take them away.
Byron is on three seizure medicines and Nicolas is on four. They are also on an emergency med. The seizures have come back. Statistically, it is pretty much impossible for them to get seizure control after failing so many medicines. Yet many kids who have failed (or been failed by) so many medicines have shown improvement on medical marijuana, including at least one child with the same disorder as ours. I believe that my children could benefit from medical cannabis. More to the point, I am certain that the treatment will save the lives of many children with epilepsy.
A few key points:
1) Children with epilepsy take medicines with horrible side effects. My boys are on Sabril, a cutting-edge medicine that requires bimonthly opthamology appointments because some people who have taken it have developed permanent peripheral blindness. They take Keppra, which causes rages, and Topamax which makes them lethargic and dull. Nico is also on Depakote, which requires regular blood monitoring for toxicity levels because the drug can destroy the liver and other organs. Their emergency med, Diastat, is valium, and is addictive and can cause respiratory failure. These medicines have stopped working and the next round of meds available to them are highly addictive and will shut down a lot their brain functions. I watched a friend's eight year old child going through withdrawals from an epilepsy medicine and cried. By contrast, the worst side effect we have heard about from cannabis therapy for epilepsy is drowsiness that usually goes away after a couple weeks.
2) Epilepsy meds are mind altering. Many of the meds get kids high or stoned. The kind of cannabis that works for people with epilepsy has low Tetrahydrocannabinol (THC) and is high in other compounds, particularly cannabidiol (CBD) and THC-a. It is not psychoactive.
3) Cannabis is working on many children with epilepsy. About 15% of kids with epilepsy who are given high CBD medicine do not see seizure reductions. But about 85% of them do, and about 80% of those kids see significant seizure reduction of about 60% or more. There are a few kinds of epilepsy that have had the most promising results to date: Doose, Dravet, and Lennox-Gastaut Syndromes. I listen with gratitude and some jealousy to parents on facebook whose kids are beginning to walk again, or talk, or eat on their own, or to smile. To play.
4) Parents are moving to Colorado by the hundreds to get access to a strain of MMJ called "Charlotte's Web" that was featured in the CNN episode. They are going because it works. They should not have to leave Maryland to get medicine that is legal somewhere else. It should be legal here.
5) The compounds in MMJ bind to cannabinoid receptors that regulate electrical signaling in the brain. They are also anti-inflammatory (brain inflammation reduces seizure thresholds). They work like opioids but don't have other side effects like depressed respiration, addiction, and death.
6) There are a number of compounds in medical marijuana that can reduce seizures. They include CBD, CBN, THC-a, THC, and other antioxidant cannabinoids, terpenes and flavinoids. There are also many ways that the medicine is administered that do not involve smoking, including oil-based extracts, dried material in capsules, raw juicing, cold extractions, and vaporization. Many of these can be made into edibles.
7) The marijuana plant is full of antioxidants that decrease brain inflammation, so it is unclear if a single chemical like CBD derived from the plant would have the same efficacy.
For me, the main issues for a Maryland law are: 1) pediatric access 2) eligibility for epilepsy/ seizure disorders 3) prescribed by doctors and not just hospitals and hospice centers 4) testing and purity requirements on key constituents like THC and CBD 5) ability of growers to grow plants at least 25 plants per patient at a time (the extracts for epilepsy use a lot of material) 6) legality of concentrates, juices, oils, vaporizing and consumables (these are how children get the medicine) 7) reciprocity between states to ensure adequate material, a huge issue in places like DC and New Jersey 8) Not putting life or death medical decisions and issuance of approvals in the hands of the volunteer-based Natalie M. LaPrade Medical Marijuana Commission which only meets monthly 9) Protection for parents and other caregivers and 10) A card that can be presented to obtain material and to law enforcement.
Some media outreach that includes reference to Maryland legislative efforts and talks a little bit about our sons, Nicolas and Byron:
Del. Patrick Hogan and I worked with Fox 5 on a segment that went viral across the country. Links are below:
We also got picked up by the Huffington Post and the Drudge report:
Please support medical marijuana for children with epilepsy in Maryland. It can save lives.