Epileptic child’s diet not funded
The retirement of Capital & Coast District Health Board’s only ketogenic trained dietitian has left the family of a Wellington boy with epilepsy paying for his care via a Christchurch specialist.
The neurologist working with Ailbe Dyer, 9, recommended in 2017 he be put on the diet to help reduce seizures caused by his drug-resistant neurological condition.
Two years after CCDHB said it did not have a dietitian with ‘‘the knowledge and experience to provide ketogenic diet services’’ for Ailbe, one has finally been trained but can only assist two existing paediatric patients, leaving Ailbe without funded treatment.
‘‘Our service does not have the capacity or capability to support additional patients’ ketogenic diet needs at this time,’’ said CCDHB chief allied health officer Arish Naresh.
The director-general of health, Dr Ashley Bloomfield, has said he is supportive of DHBs providing access to treatments like this.
‘‘I am aware the ketogenic diet has been shown to improve seizures
in some people . . . it is the responsibility of the DHBs to fund or provide services for their resident populations,’’ Bloomfield wrote to Ailbe’s mother, Meredith Dyer, in July.
The family spends about $115 a week on dietitian fees, as well as a further $100 a week on high-fat food items like cream, butter, macadamia nuts and avocados.
‘‘Our son has been on the diet for about eight weeks now. We have already seen a huge improvement, mostly in his cognitive abilities,’’ Dyer said.
A ketogenic or ‘‘keto’’ diet can provide relief for those living with epilepsy, and was the subject of a recent Epilepsy Waikato petition to Parliament’s health select committee. The diet, which is essentially a high fat, low carb eating regime, can help about 60 per cent of people with medication-resistant epilepsy.
About half see an almost 90 per cent reduction in seizures.
Canterbury DHB has offered the diet through its children’s service for more than three years, while Auckland DHB also offers limited funding of the diet at Starship children’s hospital.
It is also routinely prescribed in countries including Britain, the United States, Canada and Australia. About 45,000 New Zealanders suffer from some form of epilepsy, with a third of them receiving little or no benefit from conventional medication.
Dyer reports a significant decrease in petit mal seizures in Ailbe. They are the most common in children and cause them to blank out or stare into space.
She hoped that over time there would also be a reduction in the bigger ‘‘clonic’’ seizures her son has – these types of seizures cause sustained rhythmic jerking and a loss of consciousness.
‘‘It takes a few months to really start seeing the effects. We are on a ‘low and slow’ version of keto which means the percentage of fat is increased slowly.’’
There was no timeframe for when keto diet services provided by CCDHB would begin. However, Naresh said the issue of improving keto access for those living with epilepsy required ‘‘discussion at a national level’’.
‘‘We have already seen a huge improvement.’’
Meredith Dyer