Medical cannabis plea for boy, three
A mother whose three-year-old son has up to 80 seizures a day wants the NHS to prescribe him cannabis.
Isaac, who has a rare genetic condition and is unable to walk, talk or eat, has tried 13 anti-epileptic drugs, all without success.
Advertisement
Mum Sarah Sugden says no clinician will prescribe medical cannabis.
Leeds Teaching Hospitals NHS Trust said there were "clear guidelines" around the drug and consultants took decisions based on patients' clinical needs.
Isaac has Lujan-Fryns syndrome, a developmental disorder believed to affect about 75 people worldwide that causes seizures in some.
Cannabis-based medicines have been legal to prescribe in the UK since 2018 for certain types of treatment-resistant epilepsy.
Charity Epilepsy Action has called for more research on potential wider benefits, but said the drug has shown "enormous impact" in reducing the the frequency of seizures in many patients.
Ms Sugden feels she has "exhausted all other options" but says she has found it "impossible" to get it on the NHS, which has reportedly issued prescriptions to just a handful of child patients
Ms Sugden says she first noticed Isaac's condition when he was six months old and that "something was not quite right" with him.
"He never really met any milestones," she said.
Just before his second birthday, Isaac had his first epileptic seizure, although Ms Sugden was told it was unlikely to have been the first.
Doctors at Hull Royal Infirmary were unable to control the epilepsy so his care was transferred to specialists at Leeds
General Infirmary. In December 2020, tests confirmed he had Lujan-Fryns syndrome.
Ms Sugden said medics tried a range of medications but the side effects were "horrendous".
She believes medicinal cannabis could help but has been unable to find an NHS or private doctor willing to prescribe it.
"It has worked for hundreds of children in the same situation as Isaac with rare epilepsies. Why not try it?," she said.
BBC