At the beginning of the year, three-year-old Everly started having unexplained seizures.

Now her 18-month-old brother is too.

Key points:

  • Two of Tamara Humenick’s children have been having unexplained seizures
  • She says they have been given no official wait time for a neurologist 
  • Expert says longer waits for diagnosis can mean developmental delays in kids

Port Lincoln mother Tamara Humenick said she needed answers when Everly’s aggressive seizures began in April, causing her to vomit, lose consciousness, and sleep for long periods of time afterwards.

After a long wait for an MRI at the Women’s and Children’s Hospital in Adelaide, medication was prescribed, but the family received no solid diagnosis and Everly continued to have seizures.

A month ago, the situation worsened — Ms Humenick’s son Arvie also started having seizures.

While there are differences between the seizures suffered by Arvie and Everly, Ms Humenick is worried about the timing and familial link.

“The fact that both of them are having them now means it has to be something genetic.”

Arvie struggles to breathe during a seizure. (Supplied: Tamara Humenick)

‘We can’t get anyone to talk to us’

Ms Humenick said she wanted her children to have genetic testing and urgently needed to see a neurologist.

However, they cannot get an appointment and Ms Humenick and her family have started a similar waiting game to that of earlier this year for her daughter.

“We are on the wait list for neurology at Women’s and Children’s, and we’ve been given a referral for the general medicine clinic; they are the team that originally saw Everly and now Arvie has been referred.

“We can’t get anyone to talk to us about an actual wait time for neurology.

“We are trying our hardest; we are ringing the hospital every week.”

Developmental delays

Epilepsy Centre SA registered nurse Michelle Dixon said getting answers and appointments for children suffering from seizures can be a challenge.

Ms Dixon has seen long wait times for many families.

“There aren’t very many pediatric neurologists, which means delays in diagnosis,” she said.

“Lengthy delays can mean developmental delays in children who have seizures.”

Ms Humenick has her own concerns over the effects of the seizures.

“Arvie doesn’t really talk much and has only just started walking.

“If he keeps having seizures, he will keep going backwards in his development too.”

The family of Everly and Arvie are desperately seeking an appointment with a neurologist.(Supplied: Tamara Humenick)

Long waits

In a statement, the Women’s and Children’s Health Network said it was working to reduce long waits for families.

“During the past 12 months, we have reduced the waiting times within this speciality and will continue to look at ways to ensure patients are seen as soon as possible,” it said.

The hospital said every referral to the department was assessed by a consultant neurologist who prioritised cases according to clinical need.

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