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Child Misdiagnosed for 8 years! 2005-02-26

Posted by clype in Health.
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An eight-year-old girl who has spent her life being fed through a tube into her stomach because British doctors diagnosed a rare eating disorder has now been told there is nothing wrong with her. Ms.Matilda ‘Tilly’ Merrell has enjoyed her first taste of food after physicians in North America who examined her said they could find no trace of the condition she was supposed to have. Tilly immediately ordered a hot dog and chips and has since eaten a steak, a burger, and tried a variety of sweets. The girl was in North America for treatment after friends and family raised 10 000 GBP to pay for the trip. Last night, 2005-02-25, Tilly’s mother, Ms.Amelia Merrell, 36, said she was ‘shocked and over the moon’ when she was told the news.

Tilly, of Warndon, Worcester was diagnosed shortly after her first birthday as having ‘Bulbar Palsy’ — a rare swallowing condition — and faced a daily ordeal of having liquid food piped directly into her stomach. When she went to school she wore a backpack that held a liquid food concoction that had to be pumped into her stomach three times a day for two hours at a time. She had to be distracted by teachers during snack times and resorted to storing scraps of food in her room just to look at.

[Picture of Kenneth Cox] Last night, 2005-02-25, her family spoke of the joy they felt when Mr.Kenneth Cox, the chief medical officer at ‘The Lucile Salter Packard Children’s Hospital’ in San Francisco, USA, said ‘there’s nothing wrong down there’ after carrying out tests and getting Tilly to sing ‘Happy Birthday’ to check for obstructions of the airways. Tilly said:

‘I’m happy and I want to go to “Tesco” when I get home, and fill up the trolley.

‘I want eggs and bacon too.

‘Then I want to get a lunch box for school’.

However, the relief is tinged with anger — and the family said they will be looking for answers from the medical professionals in the UK who were meant to be treating Tilly. Ms.Amelia Merrell said

Dr.Cox smiled at us and said all he could see were a giant pair of tonsils which looked like they were kissing. Me — and my mum, who was in the room — looked at each other — and said “what do you mean?”. ‘He shone a light down Tilly’s throat and I could see they were absolutely huge.

‘After that he gave Tilly bit of food to swallow.

‘Her swallowing reflex kicked in and after a little bit of choking when food caught at the back of her throat, she managed fine on her own.

Tilly was frightened she’d need an operation and didn’t understand at first.

‘The specialists told us the feeding tube was doing more harm than good and was causing reflux-making liquid to come back up.

‘They have made a referral for us to “The Great Ormond Street Hospital” in London for a follow-up appointment’.

Mr.Robert Dicks, spokesman for ‘The Lucile Salter Packard Children’s Hospital’, said:

‘There may have been a serious problem caused by the virus when Tilly was young, but this no longer exists.

‘Our doctors discovered she could eat normally — and there was no anatomical reason, ENT problems, or internal problems for this.

‘We have this result due to her family’s extraordinary struggle.

Tilly is now having occupational therapy to de- mystify the fear of food’.

Tilly had seen various specialists over the years and her mother — a single parent — said they were continually having to argue for tests such as barium meals and were told they were wasting their time. When Tilly last saw a specialist at ‘The Worcester Royal Hospital’ in 2005-01, her mother encouraged her to tell the physician that people in the local community had got together to raise 10 000 GBP to send her to the USA for tests at the start of 2005-02.

‘The doctor turned and looked at Tilly and just said “don’t build your hopes up”.

‘He did not even look at her throat; all he did was to sound her chest.

‘That was just typical of what has gone on, it’s been all “two steps forward, two back”‘.

The ‘nightmare’ for the family began shortly after Tilly’s first birthday when she was taken to hospital suffering from a high temperature and vomiting Physicians at ‘The Birmingham Children’s Hospital’ realised food was seeping into her lungs, causing an infection, and immediately began feeding her with a tube down her nose. Shortly afterwards she was diagnosed with the condition, and endured a childhood where the kitchen door was padlocked to keep her out, and where she was once so frustrated that she burst the lock and broke into the ‘fridge to eat a bit of cheese. The incident resulted in a life-threatening scare when the cheese went into her lungs.

Tilly’s grandmother, Ms.Sonia Merrell, had never given up hope that something could be done for Tilly despite the family telling her she was wasting her time. When she spotted a similar case on the Internet, she got in touch with the hospital at Stanford University and, after e-mailing Tilly’s medical notes, they were invited over.

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