Genetic tests revealed the diagnosis of GLUT1 deficiency (Glucose Transporter Type 1 Deficiency Syndrome) – the cause of Ella’s seizures and movement episodes.
Ketogenic Diet Therapy and its impact on quality of life for patients with drug-resistant epilepsy.
The diagnosis took time – 4 Failed AEDs later.
Tia was diagnosed with a rare form of epilepsy called infantile spasms, which has a catastrophic effect on the brain. The seizures caused by the disorder can result in severe brain damage over time, and Tia's parents were terrified.
Tia’s medical teams started her on some anti-seizure medications to treat her epilepsy, all of which were ineffective. Over two years, Tia was put on four different anti-epileptic or anti-seizure medications (ASMs), but her terrible seizures never stopped. Nothing helped. After a number or failed medical interventions, she was diagnosed with refractory or drug-resistant epilepsy and was put on the Keto-Diet to manage intractable epilepsy by her neurologist.
Tia’s story, as told by her mum
The family was relieved and elated when, within the space of 6 weeks, Tia had her first seizure-free day, and the positive effects of the Keto-Diet on intractable epilepsy became abundantly clear. Her mum was delighted to mention that since the 17th of December 2021, her daughter has not had a single epileptic seizure. What a great result!
“If she had carried on having seizures the way she was, I don’t think she’d be here today. She was drifting away from us.”
“When Tia first went onto the Keto-Diet and used specialized ketogenic formulas to support the diet but now we use specialized keto products in everyday batch cooking too.”
“The first thing we noticed was that she started to laugh again. I’ll remember that forever because she had completely lost her laughter.”
“She was having hundreds of seizures, every single day. 24/7 – all the time. The more and more seizures she was having, the greater the risk became of dying from her seizures. I don’t think she would be here today if we didn’t come onto the Keto-Diet.”
“Thanks to Keto-Diet for drug-resistant epilepsy, Tia has now got a second chance. Today she’s happy and it’s all because of the Keto-Diet. It saved her life and it’s given me another chance to be a proper mum, because previously I felt more like a carer than a mum to my daughter.”
Curious to know more about how Keto Diet Therapy can support patients with drug-resistant epilepsy? Speak to your healthcare professional
Ketogenic Diet Therapy and the impact on quality of life for patients with GLUT1 deficiency
Ella’s story, as told by her mum
"We felt like we couldn't live life." – Ella's mum, UK.
“We’ve gone from a child who would have paralysis and couldn’t walk, to a child who’s going surfing and climbing walls. She’s just this delightful ball of energy and happiness. And that is all because of the opportunity we’ve got by trying the Keto-Diet to enable her inner light to surface because she’s not in a fog of seizures and movement episodes anymore.”
“Since she’s started on Keto-Diet therapy, Ella’s quality of life has improved massively. It’s literally like night and day.”
“I had a phone call from a consultant neurologist who told me that Ella had been a diagnosed with GLUT1 deficiency syndrome and that the only known management option for GLUT1 disorder was the Keto-Diet.”
“Ella was having drop attacks in school at least four times a week where she would lose all control of her body. She would drop to the floor; she couldn’t walk, and she was unable to communicate effectively. It was very challenging. We felt like we couldn’t live life”
Curious to know more about how Keto Diet Therapy can support patients with drug-resistant epilepsy? Speak to your healthcare professional
VERIFIED CONTENT: Nutricia Metabolics UK
Disclaimer: The views/opinions presented are solely those of the individual and do not necessarily represent those of Nutricia. This article does not constitute providing medical advice or professional services. Not all forms of epilepsy are treatable by the ketogenic diet. Consult your neurologist and epilepsy care team before adjusting any medications or starting the ketogenic diet to ensure the appropriate administration protocols to support the patient’s unique needs. The copy has been edited for clarity and ease of comprehension.
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