Saturday 24 March 2018

Mother of boy (2) with severe epilepsy calls for legalisation of cannabis in Ireland to allow son to be treated at home

Louise Kelly

Louise Kelly

The mother of a two-year-old boy with a severe form of epilepsy has called for the legalisation of cannabis in Ireland.

Little Tristan Cahalane suffers from Dravet syndrome and his mother Yvonne has had to move with him to the US to get the treatment he needs. 

"It is known as a catastrophic form of epilepsy," Yvonne told Newstalk Breakfast.

"It's uncontrollable with the average pharmaceutical medication. So a lot of these children [who suffer from the syndrome] end up on a mass cocktail of drugs to try and maintain it a little bit."

Dravet syndrome is a rare genetic illness that occurs in infancy; it is a form of severe epilepsy, a life threatening condition in which seizure can last longer than 30 minutes.

An estimated 150-200 of 8,000 children in Ireland with epilepsy suffer from Dravet syndrome. 

"The seizures are long and they can end up to going up to 500 a day for some people," Yvonne said.

According to his mom, Tristan was having as many as 20 seizures daily, episodes that would end in injuries to the young toddler.

Read more: Mother pleads for 'commonsense' approach to medicines such as cannabis oil to help daughter (6) with rare illness

Yvonne said that it was during her in-depth research into the syndrome, a time when baby Tristan's "huge amounts of medication" was regularly changed, she discovered that cannabis was an effective treatment.

"It's a cannabis oil - just the whole plant, so that you have the broad spectrum of all the compounds in the plant," she explained on the radio show.

However, the controversial product is not licensed in Ireland or other EU member states.

In December, the family "left everyone behind" to move to America so that Tristan could avail of the product, which can used in drop form, as a thick paste or as a patch for the child.

But Yvonne maintains that the relocation was worth it as the cannabis oil has "done wonders for Tristan".

"It's crazy....he's a new child...Within days there was a difference," she said.

The little boy had stopped talking last May as he was having heavy seizures at the time - but the new treatment meant that he was beginning "to use his words again".

The family's US visa expires in December and Yvonne has called on action from the Irish government to change the laws to allow Tristan to return home.

"We can't stay here indefinitely - and if we come home without this [cannabis oil] Tristan's absolutely going to be worse," said Yvonne.

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