Meet Zachary

Posted by on May 10, 2011 in no category | Comments Off

Meet Zachary

On April 12, 2013 Zachary was brought into this world. In September, Zachary was diagnosed with Infantile Spasm Syndrome, a rare form of epilepsy that usually leads to a catastrophic form of epilepsy. The hope was that with a routine of medications, the seizures and the radical brain waves would return to normal. After 15 different medications, the longest Zachary went without a seizure was 7 days. When Zachary has a seizure, he experiences body and limb flares along with head drops. The head drops are the worst because his body loses control and he smacks face first into the ground. He could experience up to 100 head drops per day. Zachary and his parents were not able to go out of the home as a family. There was always a possibility of having a seizure and head drops. A few times they ventured out, Zachary ended up in the hospital because of a bloody nose or lacerations to his body. At the beginning, family and friends were very supported but as time went by Zachary’s parents started feeling isolated because people stopped visiting since so much attention was placed on Zachary.

 In May 2014, the doctors started to give up hope on Zachary since the medical team was not able to isolate the cause of the seizures and the medications were not working. Zachary’s father saw a Discovery Channel Special on CBD oil (a cannabis extract) that had helped other pediatric patients with seizures. Right around that time, Zachary’s just experienced a Grand Mal seizure where Zachary lost consciousness and had violent muscle contractions. He was rushed to the ER and the Neurologist informed them that this was going to become a normal occurrence. Zachary’s parents were very skeptical of using cannabis to help their son plus it is very expensive but they had no other option. With the help of their Pediatric Neurologist, they started Zachary on a CBD oil treatment. Progress was slow but finally on Oct 10th, Zachary had NO SEIZURES. Zachary went for 54 days without a seizure. Occasionally, he will have a seizure now but they are not as violent as before. Zachary continues to show improvement in his brain waves, motor skills and development skills. The parents have been pulled and stretched in so many directions; emotionally, financially and spiritually. They can look back and appreciate the little victories, the milestones and are looking to the future with excitement.