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Ana’s mom, Milly, stirs more medicine into ice cream and brings it over. But Preston won’t eat.
November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
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She was giving Preston a bath — not his first, not unusual. But then his eyes rolled back in his head and his face went white and his little body began to shake and Ana was certain he was dying. At the hospital, doctors quickly sent her home. Lots of kids have random seizures that never recur, they said. But Preston’s did.
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Watch Haleigh Cox was diagnosed with Lennox-Gastaut Syndrome as a baby. She is the namesake of “The Haleigh’s Hope Act,” a bill filed in Georgia to legalize cannabis oil high in CBD. The oil is used to control her seizures.
And so this was the logical next step. A leap into the unknown.
HB 885, CBD oil legislation known as Haleigh's Hope Act (named for four-year-old Haleigh Cox), failed to receive a Senate vote after sailing through Georgia's House on Mar. 4, 2014. However, in May, Gov. Nathan Deal signed an executiuve order calling for a study. The British firm GW Pharmaceuticals and Georgia Regents University are collaborating on the research. The legislation was reintroduced for the 2015 session. The House passed it on Mar, 25, 2015. The bill covers eightt con***ions, including seizures, cancer, MS, ALS, sickle cell and mitchondria. Gov. Deal signed the bill into law on Apr. 16, making Georgia the 13th state to legalize CBD oil.
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July 16 “Oma,” Preston’s grandmother Milly, watches as nurses prepare him for surgery at Children’s Hospital in Aurora. For weeks he has not been eating well or getting his full amount of seizure medications. Preston went in for an appointment to meet his neurologist that turned into an operation for a gastrostomy tube and a 24-hour EEG. His mother, Ana Watson, had to stop giving him the CBD oil so they could get a good baseline EEG.
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Her bookshelf at home charted the journey and spoke to her struggle. First came “What to Expect in the First Year.” Then “Keeping Faith.” Then “Delmar’s Drug Reference for Health Care Professionals.” Then “Three Weeks to Say Goodbye.”
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She had to wait another three days after picking up the oil for a lab report to come back to confirm its potency. When the day of the first dose finally arrived, in mid-July, Ana bounded into the kitchen of her new home to pull a bottle of the oil from the fridge.
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