Friday, February 25, 2005

Please, can we have socialized medicine too?

Girl fed through a tube for seven years discovers burgers

By Nick Britten(Filed: 26/02/2005)

An eight-year-old girl who has been fed through a tube all her life is eating normally for the first time after doctors discovered that a rare nerve illness she was diagnosed with as a baby was just enlarged tonsils.

Tilly Merrell was fed directly into her stomach after doctors said that eating normally could kill her. When she was 12 months old they diagnosed Isolated Bulbar Palsy, a weakness in the nerves controlling swallowing, meaning that food could enter her lungs instead of her stomach.
Her local community recently raised £10,000 to send Tilly to America for tests and doctors in California said that all that was wrong was enlarged tonsils and Tilly could eat normally. She is expected to lead a full and normal life.

In the past few days, Tilly has been making up for lost time by tucking into burgers, chips and other fast food and her family are planning to throw her a huge party when they return to their home in Warndon, Worcester today. Yesterday Tilly said her first meal consisted of "a burger with cheese, bacon, egg and ham. And some hash browns with grease". Breakfast the following day included two strips of bacon.

Her mother, Amelia, 36, said: "I'm so grateful to everyone who has helped. It has been really difficult for Tilly. She could be very nasty to me. She would snatch at the dinner table. You couldn't sit and have a meal in peace. It was traumatic for her."

Tilly suffered eating problems a week after being born. After extensive tests at her local hospital in Worcester and Birmingham Children's hospital, doctors noticed that liquid was seeping into her lungs when she ate or drank. They took her off foods and fed her through a tube in her nose, and later diagnosed Isolated Bulbar Palsy.

As she grew up, Tilly was forced to wear a backpack providing her liquid feed through a hole in her stomach, which took two hours at a time to administer, three times a day. Her mother, Amelia, said that doctors "clung" to the diagnosis although they said that they suggested she might recover.

Mealtimes became a nightmare, and as she grew older Tilly seemed to crave normal food, often being caught rummaging through cupboards.

She was given hope after her grandmother, Sonia Merrell, 60, read about a girl with a similar condition being treated in California. She contacted the Lucile Packard Children's Hospital and they invited Tilly along for tests.

Consultants there were intrigued that she had no neurological symptoms often associated with the palsy and they concluded that while she had had infections, they were long gone and food was now able to go straight to her stomach.

Marianna Thorn, an occupational therapist treating Tilly, said the medical team had not ruled out that the youngster had had a problem at some point, such as a viral infection that cured on its own."

Dr Peter Koltai, who also treated Tilly, said it was a "pretty strange case", but he refused to blame British doctors for not making the same discovery.

A spokesman for Birmingham Children's Hospital, said: "We cannot comment further until these results are available."

A spokesman for Worcestershire Acute Hospital NHS Trust said it was awaiting with interest the finding of the American team.

The doctors clung to the diagnosis...I wonder if that means they ran any tests or just stood by their years-old opinion. Yeah, I want government health care. Yeah. Really.

---Katie

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