BRIAN

blogBrian

BRIAN

Brian is my 13-year-old son who is desperately in need of the hope from Charlotte’s Web. He has been on the waiting list here in California since October, 2013 with the Realm of Caring, California. Prior toplacing him on the waiting list for CBD, we exhausted every other option. Brian suffers from intractable seizures as a result of Cortical Dysplasia Type 1, and an underlying condition that is yet to be diagnosed. His first seizure was at the age of 5 ½ (grand mal, tonic-clonic), the second was 6 months later and it lasted over 30 minutes landing him in the pediatric intensive care unit.

At that point he was diagnosed with epilepsy and started on medications. He was relatively controlled on medications and had normal development until he was 11 ½. In fact, until that time he was actually a straight A student and on the Principal’s Honor Roll. However, when he entered the 6th became intractable. He had 55 seizures a month, and then went into status with clusters of 29 grand mal seizures within 24 hours. This led to an epileptic encephalopathy and caused brain damage. My straight A student now tested as borderline mentally delayed (IQ 70!). He had no working memory, couldn’t encode, and naming problems. We went through over 15 medications, none of them working and some with horrible if not life-
threatening side-effects. Finally the team at UCLA said that he needed brain surgery as soon as possible or he could die from the type of seizures he was having. So we agreed. On January 10, 2013 he had his entire left temporal lobe, amygdala and hippocampus removed. He was seizure free for ONLY 18 days. Then he had 28 seizures on day 19.

We all fell into a deep depression, there was nothing left, no hope for our child. Until we found Charlotte’s Web.

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