KEY POINTS:
When Wade Somani was put on a new drug to calm his hyperactivity and aggression, he suffered hallucinations and completely lost control.
After two years on Ritalin, he was put on Rubifen in April under Government subsidy changes to save $1 million a year.
"He had terrible hallucinations. He had shaking spasms in his legs. He was throwing himself around the room, screaming and howling that he was in agony," his mother, Jude Betham of Pukekohe, recalled yesterday. "We were very frightened because we've never seen him like that before."
Wade, aged nearly 12, has attention deficit hyperactivity disorder (ADHD) and Asperger's syndrome.
When he started taking Ritalin at 9, his problems of being overly aggressive and impulsive and his difficulty in concentrating all settled.
When he switched to the Pharmac-funded Rubifen SR (sustained release) after the state subsidy of Ritalin SR ended, he reverted to being instantly aggressive and unpleasant leg spasms and pain, nightmares and early waking surfaced.
But last month Mrs Betham read a Herald article about 8-year-old ADHD and Asperger's patient Grant Celliers being stood down from school after his behaviour spiralled out of control on Rubifen - before calming down when he went back on Ritalin.
She decided to follow suit, although Ritalin now costs $48 a month.
"I nearly died of fright, for the story with Grant is so similar to Wade's. Wade ... literally begged me to let him stop taking Rubifen.
"As a mother I am extremely angry and so sick to my stomach to think I have put my beautiful child through this agony, all because I was told Rubifen was exactly the same as Ritalin, and I took that as gospel."
Grant's mother, Di Celliers, is campaigning for Pharmac to reinstate the Ritalin subsidy and said she had heard after the article from other families with similar experiences. She is urging families and doctors to report Rubifen problems to bolster the case.
Pharmac and the Health Ministry, however, are standing by Rubifen, saying it has the same active ingredient - methylphenidate.
The Centre for Adverse Reactions Monitoring, at Otago University, has had about 45 reports of adverse reactions to Rubifen SR since February.
Dr Stewart Jessamine of the ministry's Medsafe unit said a similar pattern emerged after Pharmac switched funding from immediate-release Ritalin to Rubifen several years ago.
Eventually this settled "as we got dose adjustments occurring".
Asked if he expected a similar path with sustained-release Rubifen, he said, "We will keep an open mind".
Pharmac said it would look at a funding change if Medsafe raised concerns about Rubifen.
