Mum describes autism trial results as like “getting your child back”

A groundbreaking medicinal cannabis trial has had surprising results for children living with autism, with one mother declaring she’s got her “child back”.

Exclusive: It is the groundbreaking trial giving hope to families of children living with autism, leading one mother to declare she’s gotten her “child back”.

Twelve children with autism were given an experimental medicinal cannabis product as part of a trial run by Monash Children’s Hospital., with two experiencing complete or near remission of their symptoms.

The other 10 patients experienced “decided improvement” which means they had partial remission of their symptoms.

The benefits were measured by standardised scales as well as parents’ observations and related to global improvement, severity of illness, socialisation, adaptive behaviour, communication, meltdowns and reduction in anxiety.

Carla Gravagna, mother to 13-year-old Melbourne boy Matteo who has Autism Spectrum Disorder (ASD), ADHD and epilepsy and is participating in the trial said it had changed their lives.

Children like Matteo Gravagna who took part in the trial were more comfortable at school and with socialising. Picture: Supplied.

“I can only describe it as getting your child back,” Ms Gravagna said.

“Matteo now sleeps through the night and goes to school four or five days a week and can participate in school excursions.

“He can tolerate daily activities that were impossible for him before, like being in a supermarket for an hour. Recently, he had a birthday party at a trampoline park, which is something we didn’t even dare to dream of being able to do before this trial,” she said.

“The further we go, the lower our degree of worry for him is. We do more and our world has literally opened up, giving us genuine hope for Matteo’s future,” Ms Gravagna said.

Matteo Gravagna, right, is one of the medicinal cannabis clinical trial participants who has ASD, ADHD and epilepsy. His life completely change for the better since starting this treatment. Matteo is pictured with his mum Carla and brother Max.

About one in 150 Australians has Autism Spectrum Disorder (ASD) which is a lifelong developmental disorder associated with problems with socialisation and communication and unwanted complications such as anxiety, difficulty socialising and they don’t sleep well.

The Monash Children’s Hospital Paediatrician leading the trial Professor Michael Fahey was sceptical ahead of the trial because “for this group of this group of clients and patients, many, many things haven’t worked”.

The current treatments include tranquillisers, antidepressants and antipsychotics which have major side effects.

Testing in the lab showed the new pharmaceutical grade cannabis product NTI164 seemed to be anti-inflammatory and supportive of nerve cells.

The initial 20 week human trial was really only meant to determine whether the product was safe and tolerated by patients but the results surprised researchers and the families involved.

A new clinical trial has found using medicinal cannabis in kids with autism saw 9 in 10 improve,, such as Matteo Gravagna.

“We know they’re getting the product and there is a possibility of bias when you do those sorts of trials, but the story was so consistent,” Professor Fahey said.

“The story was so strong, that it surprised me. The people would walk out of the room, and we’d say ‘wow, that’s another person who says I’m better with socialisation, I’m better with education’. And we could see from our observation, that they looked better,” he said.

“It wasn’t just that they were doing well from a communication point of view, but the therapies that they were they were attending, were going better and we’re getting far more out of it”.

Prof Fahey said children in the trial were also sleeping better but it wasn’t because the drug was sedating them.

“This is a strong indication that NTI164 has the potential to be an enabling treatment for some of the symptoms that cause people with Autism Spectrum Disorder distress,” he said.

The results were so strong the researchers won approval to extend the treatment for a further 54 weeks and the families want their children to continue receiving the treatment.

Professor Fahey is currently seeking ethics approval for a larger trial involving 50 people with a blinded component where neither the researcher nor the patients will know which people are getting the real drug and which are getting a dummy pill.

Children in the trial took around 10ml of the liquid product twice a day and around five dropped out of the trial because they could not tolerate the taste of the product.

Side effects included nausea and some people experienced mild skin rash but Professor Fahey said none of these effects were serious.

“The blood work that we did was very stable, it did not affect blood counts, and it did not affect the liver,” he said.

Professor Fahey stressed the product used in the trial was specially formulated, was pharmaceutical grade and was not like other cannabis products available on the market.

Originally published as Mum describes autism trial results as like “getting your child back”