Mum’s plea after 50 appointments fail to find cause of Bedford toddler’s daily seizures

Erin Mead says her daughter Millie’s episodes began suddenly, when she would become limp and floppy like a rag doll and unresponsive. At first, she suffered seizures once a week, but by the start of this year, the episodes had become daily and sometimes happen multiple times a day.

Her eyes now roll and her arms and legs jolt in her sleep. But despite more than 50 appointments and three EEGs, Erin says the family are no closer to an answer. They waited two and a half months for an MRI scan last year, which came back clear. Doctors told her another would be needed in future as Millie’s brain develops.

Erin says she’s seen at least ten different doctors since May 2023, but none have provided a diagnosis. After spending nine days in hospital in July she says they were “told completely different things” by different specialists and asked repeatedly for more evidence of Millie’s seizures.

This week, Erin and her partner were told Millie was autistic, something Erin disputes.

Erin said: “I have autism and my sister has severe autism, I know what autism is and the struggles associated with it. My child is not autistic. Children under five do not receive autism diagnoses – yet Millie is not even three yet and they have tried telling me she’s autistic.”

Erin believes doctors have dismissed her concerns because she is she young and think she is overreacting.

“It’s been so frustrating," she said. “Millie has been so traumatised with all the hospital appointments. She won’t go anywhere near anyone with a nurse’s uniform. She’s been through such a lot.

“My partner and I have battled for two and a half years to get a diagnosis and doctors have dismissed my appeals to be referred for a second opinion. I just hope that no other child or baby has to go through this. It’s been awful and scary.”

Erin, who is unable to work because she has no-one to care for Millie, is now fundraising for a consultation at a private neurological clinic in London, which has agreed to assess her daughter but requires upfront payment.

So far, the fundraiser has raised £200 towards a target of £600. You can donate to Erin’s GoFundMe page here.

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