AIDEN'S JOURNEY

Aiden, derived from the Irish Aidan, meaning “fiery one.” The name originated from the Celtic god of sun and fire, Aodh. Ironically, Aiden’s throughout history have been known for their gentle nature including St. Aidan, and a bishop who was famed for his kindness.

AIDEN'S STORY

Our journey began in May, 2015; it was shortly after Aiden’s second birthday when he was diagnosed with Generalized Epilepsy. At the time, Aiden was having 100-200 seizures a day, from absence and focal seizures to full grand mal seizures that led to bumps, bruises and potential neurological damage. These violent seizures, in combination with the medications, made our bright, rambunctious child tired, sedated, and emotionally drained. We even struggled with basic communication and developmental delays to the point we taught Aiden sign language. A month into his anti-seizure meds, which were not working for our son, my wife and I turned to the NY Medical Marijuana Program. Even though our son’s doctors were not aware of the program and did not discourage us from trying medical marijuana for Aiden’s seizures, we consulted a certified medical marijuana doctor. Aiden was finally registered as a medical marijuana pediatric patient.

Aiden experienced almost every type of physical seizure imaginable, including febrile and absent, colonic, focal, atonic and myoclonic seizures. The seizures would hit Aiden at any time of the day, including staring spells, gasping for air, dropping his face forward or backwards, twitching, jerking and muscle spasms. His body was under almost constant attack to the point we padded the living room for him to play. He constantly wore a helmet, in and out of the house.

The certified medical marijuana doctor prescribed a full-spectrum cannabidiol (CBD) tincture that was non-psychoactive (< 0.2% THC) and could easily be administered orally. Aiden took this medication three times a day: when he woke up, after lunch, and before bed. Our son went from almost 200 seizures a day to 5-10 a month, and sometimes had seizure-free weeks! Without these devastating seizures, my son has been able to attend preschool full time, communicate with others, and is a much happier and engaged child. After years of using CBD, different types of diets (i.e., Keto), documenting seizure activities, and applying a holistic approach, we started seeing a difference. We realized that the effectiveness of full-spectrum CBD had become inconsistent controlling the seizures, so with consultation and research we switched to broad spectrum CBD, which seemed to really help. But we also understood that this alone was not the magic bullet, but a piece of the puzzle. Aiden needed 10-12 hours of sleep, 40-50oz of water daily, and a well-balanced diet high in fiber. As time went on, we noticed that when his teeth came in it triggered seizures, high fever, lower blood sugar levels, dehydration and growth spurts, which also caused his seizures. It seemed that we were chasing a ghost most of the time. As one can imagine, no one in the family was really sleeping, and we were on high alert at all times.

When Aiden began to attend pre-k school, he had an IEP and a nurse’s assistant who escorted him on the bus, to and from school. The nurse was there to ensure that, if he had a clonic-tonic seizure, she would be on hand to administer the emergency medicine, Diastat, aka Valium Rectal. We hated to see the effect that Diastat had on Aiden, which was administered to stop seizures that lasted for more than five minutes. The nurse could not, and would not, administer CBD oil, so either myself or Nina had to leave work to make sure he received it in time.

We know that this is not sustainable for either of us, and we are fully aware that our son cannot be without one of his medications. However, it is also not fair to the nurses and school representatives to work in fear of administering medication to Aiden. Nina and I decided to propose Tanshin’s Bill, to give caregiver status, as defined under the NY Medical Marijuana Program, to all school nurses and representatives in New York State private, public and charter schools. These medications, administered by school nurses, should include prescribed full and broad-spectrum medicines for certified medical marijuana patients. This bill would not only change my family’s life, but also the lives of thousands of children and their families who have already benefited from the NY State Medical Marijuana Program.

Although we pushed the bill, met with state officials and conducted interviews, the bill stalled. The issue was that medical marijuana is a control substance and a Schedule 1 drug, and schools that receive federal funding do not want to jeopardize it. So, the bill never passed, but the prevailing health and education laws were amended to include the issues and concerns that we had raised. It was a win that we accepted and looked forward to when the powers that be sent recommendations to schools. As of today, schools are not aware of the changes, so our work to educate continues.

Aiden has made great strides and is in school full time, speaking, reading and being an active little boy, in and out of school. We reflect daily on all those who have supported us in this journey, and who love Aiden. He continues to develop and grow physically and mentally. Even when he has a breakthrough seizure, his recovery is great and with very little or no residual effect. We have not yet reached our goal, and we will not rest until Aiden is seizure free!

Pre-K can't give needed cannabis oil to boy

Aiden Stephen, 5, takes cannabis oil to help prevent his epileptic seizures. Aiden’s cannabis doctor says he was having 2,000 seizures a month and had to wear a helmet. But now Aiden’s seizures have been reduced to about five per month—thanks to cannabis oil.

The Children With Epilepsy Who Need Cannabis To Survive

These families rely on cannabis to help their children, who have epilepsy, control their seizures.

Aiden's Cardio Day

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Physical Therapy

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