Family fear losing son’s medicine
A dad has warned a decision by regulators to consider cannabis oil for medical use will remove the only drug that works for his son.
Struan Robertson’s son Max has Lennox-Gastaut Syndrome (LGS) – a severe form of epilepsy.
LGS causes different types of multiple seizures daily and severe developmental problems.
From October 31, makers of cannabidiol (CBD) oil – a product that has eased Max’s symptoms – will be forced to halt production, pending industry regulation.
Struan, 49, and his wife Lorraine, 43, are now fighting to ensure the Medicines and Healthcare products Regulatory Agency (MHRA) approval of CBD oil as a medicine does not take Max’s treatment away.
Struan, from Haddington, East Lothian, said: “Max is nonverbal, requires round-the-clock care and hasn’t ever responded to prescribed medications. He was simply miserable, in anguish with no respite.
“We have tried everything from a special diet to intrusive surgery.”
Earlier this year, Max was selected for clinical trials of Epidiolex – a CBD oil, which contains extracts from the cannabis plant.
Struan said: “Unfortunately the Epidiolex trials had no positive effects on Max.”
Determined not to give up, the family then tried a US CBD oil called Haleigh’s Hope.
He said in the eight weeks Max has taken the oil, he has become more alert, with eye contact, picks up his own toys and is even jumping on a trampoline.
While his seizures remain, his family said they have reduced.
Struan said: “We are delighted that at last cannabis has been declared a medicine.
“However due to this new regulation the MHRA are to take my son’s medicine away. This is true of many, many parents and we intend to fight this ruling.”
The MHRA are to take his medicine away. We will fight the ruling