Capital & Coast DHB ne peut pas fournir de diététiste kéto à un garçon atteint d'épilepsinovembre 20, 2019
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 through a Christchurch specialist.
The neurologist working with Ailbe Dyer, 9, recommended he be put on the diet to help reduce seizures caused by his drug-resistant neurological condition in 2017.
But 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.
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The result has come after the Ministry of Health director-general of health Dr Ashley Bloomfield said he was supportive of DHBs providing access to treatments like this.
« I am aware that 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 in a letter to Ailbe’s mother, Meredith Dyer in July.
The family spent about $115 a week on dietitian fees, as well as a further $100 a week on food which included buying high-fat 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. He seems happier in himself, he’s brighter, smiling and laughing more.
« He is more interested in what is going on in the world around him, has a longer concentration span and has come out with more words and in some cases, actual sentences, » Dyer said.
A ketogenic, or « keto » diet can provide significant relief for those living with epilepsy, and was the subject of a recent Epilepsy Waikato Charitable Trust 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 of them 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 offered limited funding of the diet through Starship Hospital.
The diet is also routinely prescribed in countries including the UK, United States, Canada and Australia.
Around 45,000 New Zealanders suffer from some form of epilepsy, with a third of them receiving little or no benefit from conventional medication and struggle to manage their symptoms.
Dyer has seen a significant decrease in petit mal seizures. They are the most common in children and cause patients to blank out or stare into space.
She hoped that over time there would also be a reduction in the number of 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 in seizure reduction. We are on a ‘low and slow’ version of keto which means that the percentage of fat he has is increased slowly over a matter of weeks, » Dyer said.
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 recognise that this is a gap, and continue to explore options to re-establish this service … we have identified that it will need input from more than just regional partners, » Naresh said.