Our third child Logan was born in 2009, and we watched with deep gratitude as this happy, beautiful baby hit his developmental milestones. Logan has always been a sweet and happy little guy. After his first birthday Logan experienced his first seizure and everything changed – our child, our family, and our world would never be the same again.
Seizures Start and Rapidly Progress
The seizures started as quick, “staring” seizures and quickly progressed to “drop” seizures. Logan would simply drop as if he were a marionette whose strings were cut. He now has all kinds of seizures, in all kinds of places -- on the stairs, in his bath, at school, on a walk. We watch helpless and heartbroken as the agony of the seizures is compounded by the injuries he accidentally receives when they occur. Following the seizures he is exhausted and sometimes takes hours to recover. It is impossible to find the words to describe the anguish we feel at our inability to help our son.
12,000 Seizures Take a Toll
To date, Logan has had over 12,000 seizures and his development has been dramatically impacted because we cannot find a way to minimize or stop the seizures. We do our best to give Logan every opportunity to reach his potential – including thousands of hours of speech, occupational, and physical therapy as well as therapeutic riding on horses, but Logan can barely communicate verbally.
Looking for Answers
We’ve sought out the best medical care we could find – seeing 8 neurologists, including specialists at the world-renowned Johns Hopkins Pediatric Epilepsy Center. We do our best daily to try to prevent seizures by carefully, even obsessively following the regimen recommended to us. But our hope is tempered with fear each time we administer a new protocol – and for good reason.
Without Change, the Prognosis is Grim
Our hard truth is this: according to Dr. Freeman, Johns Hopkins University, after trying two anti-seizures medicines, the chances of finding success with existing seizure control meds only 10%.
Out of desperation we have given our little angel some nasty, heavy-hitting, mind-altering drugs prescribed by the neurologists and epilepsy specialists. Sadly, these toxic drugs haven’t worked; indeed, Logan has suffered some tremendous consequences from the side effects. Some medicines even made the seizures worse. Other drugs have caused strange behaviors, lack of balance, and interrupted sleep. We even tried the “ketogenic diet,” a strict high-fat, difficult to administer diet that repulsed Logan. Nothing helps…nothing has stopped the seizures.
There are other anti-seizure medicines we can try, but they come with the very real possibility of more side effects, many of which are devastating for a young child and could do more harm than good – brain damage, liver damage, pancreatitis, kidney stones, developmental delay, decreased IQ and mental functioning, ataxia, dizziness, insomnia, heart palpitations, loss of appetite, nausea, inability to sweat, and even death.
Yet we won’t give up. We can’t give up. He is our son.
Hope in a Plant-Derived Oil
We have one more possible option – one that is derived from a plant, one that is natural, one that has very few side effects. One that is certainly safer than the toxic medicines he has been prescribed. One that is not available to Logan -- medical cannabis.
Dr. Sanjay Gupta, CNN’s Chief Medical Correspondent, who had previously been against medical cannabis actually apologized for his role in spreading misinformation about the plant and now has this to say about the compelling evidence:
“Take the case of Charlotte Figi, who I met in Colorado. She started having seizures soon after birth. By age 3, she was having 300 a week, despite being on 7 different medications. Medical marijuana has calmed her brain, limiting her seizures to 2 or 3 per month. I have seen more patients like Charlotte first hand, spent time with them and come to the realization that it is irresponsible not to provide the best care we can as a medical community, care that could involve marijuana. We have been terribly and systematically misled for nearly 70 years in the United States, and I apologize for my own role in that.”
Reasons for Optimism
Medical cannabis has also worked for our friend, Zaki, in Colorado who suffers from Doose Syndrome, the same type of epilepsy with which Logan was diagnosed. Since taking medical cannabis, Zaki has been seizure free for over a year and his EEG, which monitors brainwaves, has cleared up significantly. Zaki and Logan present in very similar ways – and that gives us great hope that it could work for Logan as well. But we don’t live in Colorado, where this medicine is available. We live in Maryland, where the academic institutions given the right to produce it have declined to do so. Our frustration is heightened because we know that every day that passes without this medicine is a day stolen from Logan. Our hearts break because he is being denied the opportunity to live up to his greatest potential.
We Need Change for the Children of Epilepsy Now
One of the Stanley brothers, who pioneered the strain of medical cannabis helping children Colorado, once said, “Illness does not stop at state lines.” For Logan, it is devastating that access to this medicine does stop at state lines. Think for just one moment what it would be like to walk in Logan’s shoes and please open your hearts and your minds to allow him to get access he needs as soon as possible to this life-changing medicine.