Living with epilepsy – TJ’s story

TJ is 14 and lives with his mum Janet, dad Kevin and brother Casey, 21 in Northamptonshire, a lot of TJ’s short life has been spent in and out of hospital. At just eighteen months old TJ was diagnosed with acute lymphoblastic leukaemia (ALL) a cancer of the blood and bone marrow. TJ would then spend the next three and half years in his local hospital receiving treatment including chemotherapy.

During this time TJ would have to learn to walk and talk again as well as re-learn his key motor skills, all of which can be a side effect of the treatment. This was so significant that at the age of 4 TJ was unable to speak, which led his parents to look for additional educational support to cater for his needs.

Just before Christmas 2006, when he was just three years old TJ was rushed to hospital with a prolonged febrile convulsion caused by pneumonia. A febrile convulsion is a fit or seizure caused by a sudden change in a child's body temperature. Whilst it is rare for a child who experiences this to develop epilepsy, it is thought that the scarring on TJ’s brain caused by the prolonged nature of the convulsion may have triggered his epilepsy.

TJ was at school when he experienced his first seizure, his mum Janet received a phone call to say that he had suddenly fallen to the floor with a seizure, later that year TJ was diagnosed with epilepsy. TJ continued to experience seizures which became more frequent, experiencing from 5-100 each day which could range from mild forms or drop seizures which could result in serious injury.

TJ continued to have treatment at his local hospital and was eventually referred to specialists at Great Ormond Street Hospital where they tried to identify the source of the seizures through telemetry monitoring, a test that looks at the function of the brain.

Telemetry monitoring records brainwaves over a period, to help pinpoint one or more areas of the brain which might be causing seizures. TJ was considered for surgery to remove the part of his brain triggering the epilepsy, there are high risks to the procedure with a 70% chance of causing brain damage and just a 30% chance of it working. TJ’s parents judging the risk to be too high continued to look for further treatment for their son.

Five years ago, at the end of 2013 TJ was diagnosed with Lennox Gastaut Syndrome (LGS) a severe form of epilepsy. LGS typically occurs between ages 3 to 5 years and can be caused by head injuries, nervous system infections and genetic conditions. Children who live with LGS experience debilitating seizures, particularly drop attacks, which can lead to serious injuries. With the diagnosis came a chance to look for a new treatment and within two years TJ was accepted on to a research trial, at first this was a 28-day randomised placebo trial to further test his eligibility for the trial. After this TJ was formally accepted on to a Cannabidiol trial at the National Institute for Health Research (NIHR) Clinical Research Facility under the care of Professor Helen Cross who ran the research trial looking at its effects on two severe types of epilepsy LGS and Dravet Syndrome.

Naturally TJ’s parent’s Janet and Kevin were apprehensive about putting their son on a medical trial particularly with cannabidiol, a substance derived from the cannabis plant but were reassured that this product had the THC removed. THC is the chemical responsible for most of marijuana's psychological effects, and like all clinical trials TJ would be heavily monitored and with careful advice on dosage and administration. Janet said “we were of course very concerned, but we were desperate to help TJ, we knew we had no real alternative”

Due to the existing classification of Cannabis in the UK the family were required to carry a medical card with them always to explain that the medication was part of TJ’s treatment for LGS, a severe form of epilepsy.

After three months of carefully administering this, prescribed cannabidiol the seizures slowly became less and less. Janet says, “it wasn’t easy, but we were given advice on the dosages and supported TJ with the medications he needs” The seizures eventually stopped, and TJ has now been seizure free for eighteen months.

Janet and Kevin said “we’re so thrilled to have our son back, before we could not leave him out of our sight and we would fear leaving the house because he might have another seizure and there was just no way of knowing. We’re now looking forward to days out together as a family of four, something we really haven’t been able to do before” TJ’s communication has also improved drastically, he enjoys telling jokes and mimicking his parents and friends. Janet and Kevin said “we’re so proud of TJ and everything he has overcome, and not once has he ever moaned or complained, we look forward to doing more with him in the future and we can never thank professor Helen Cross enough for giving our son back”