Posted on 03/23/2005 5:35:31 PM PST by gentlestrength
How about seven years of misdiagnosis with a feeding tube where none was needed and the patient victim was perfectly capable of eating by herself to begin with?
After seven year wait, Tilly tastes her first real food
SHAN ROSS
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.
Matilda "Tilly" Merrell has enjoyed her first taste of food after doctors in 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 America for treatment after friends and family raised £10,000 to pay for the trip.
Last night, Tillys mother, Amelia, 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 isolated 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.
Last night, her family spoke of the joy they felt when Dr Kenneth Cox, the chief medical officer at the Lucile Salter Packard Childrens Hospital in San Francisco, said "theres nothing wrong down there" after carrying out tests and getting Tilly to sing Happy Birthday to check for obstructions of the airways.
Tilly said: "Im 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 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 Tillys 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 shed need an operation and didnt 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 Ormand Street Hospital in London for a follow-up appointment."
Robert Dicks, spokesman for the Lucile Salter Packard Childrens 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 familys 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 January, her mother encouraged her to tell the doctor that people in the local community had got together to raise £10,000 to send her to the United States for tests at the start of February.
"The doctor turned and looked at Tilly and just said dont 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, its been all two steps forward, two back."
The nightmare for the family began shortly after Tillys first birthday when she was taken to hospital suffering from a high temperature and vomiting. Doctors at the Birmingham Childrens 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 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.
Tillys grandmother, 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 Tillys medical notes, they were invited over.
Yes, they are as crooked as an old man's bent cane. (My lame attempt at mimicking Dan Rather.)
I thought so.
Some of her guardians were doctors. One was a lawyer. Are you under the impression that Terri as not seen by neurologists?
Have you ever read ONE single solitary court transcript regarding this matter? Just one? Have you ever read one GAL report?
Have you googled PVS (spelled out) and understand that Terri is acting like nearly ALL PVS patients and it means nothing? ABC has links on this very issue tonight.
At the very least, read the Wolfson report. Link below. Others as you may wish.
Freepers used to be smarter than this. People used to do research instead of falling for every single internet rumor and unsubstantiated doctor to come down the pike who "says" he's a doctor and just knows that Terri can be cured.
Are the new rules around here that we are supposed to believe internet people who have no way of verifying their words, didn't testify under oath and weren't subject to cross examination vs. court documents and people who did testify under oath and were subject to cross examination?
Are those the new rules now? Just tell me and I'll make sure I never do one damn bit of research again.
And for the two doctors you seem to think have validity that the Schindlers brought to court in 2002, are you aware that one of them didn't know the difference between a coma and PVS? And one of them is an alternative medicine doctor, has faked being nominated as a Nobel prize winner, his clients must pay in cash because insurance companies won't cover him and he advertises in the National Enquirer? Links below to that tidbit too.
The Courts ruled the two doctors who make up that blessed 40% you are so fond of quoting weren't competent and didn't present evidence that is recognized by the medical community.
1. In 1993, Terri's doctors recommended to Michael that he remove the tube. This is done all the time in this nation.
He didn't want to do that because he thought it was cruel. He then saw his parents go through it so by 1998(?), he said ok.
But still he didn't want to be the final arbiter of this and went to the court and asked THEM to make the determination. The Courts noted in their decision he didn't have to do this and effectively weakened his own position by doing so. (I have the exact words in the link to the court decision).
2. During the first 3 years of Terri's PVS status, no one argues that she wasn't given the most rigorous therapy. Everything that could be done, was done. He even had electrodes implanted in her brain in an effort to stimulate her brain activity. In the early 90's, the electrodes used make her ineligible to have an MRI. They use different kinds now and there has been some suggestion that doctors recommended those electrodes be removed, although no freper has ever been able to provide me with a link to that.
#3. In the early 90's, MS sued the hospital for malpractice. Terri presented at the hospital with cardiac arrest as the result of being bulimic. The hospital didn't pick up on that and didn't treat her appropriately which in part resulted in her PVS. MS was given $300,000 for loss of consortium; the rest went to Terri's care and is controlled by the court (I think). Mr. Schindler thought he was entitled to some of that $$ and they argued over the $$.
#4. Previous to that, MS and the Schindlers had gotten along fabulously. Schindlers considered him like a son and said they couldn't get through it without him. Then came the $$ problem.
#5. The Schindlers testified under oath the yknew their daughter was PVS. They now act like she isn't, but they've already admitted it.
#6. The Schindlers tried in the early 90's to care for their daughter and returned her to rehab shortly after because they were overwhelmed (their word). There is no reason to believe that 13 years older they are better capable of caring for Terri this time.
#7. The Schindlers testified under oath that they would be willing to see Terri undergo multiple amputations should she get diabetes from loss of circulation. They also said that no matter what she wants, they want to keep her alive.
#8. No honorable man who knows his wife is PVS is going to stand by and watch her get carved up. In my opinion.
#9. Michael became a respiratory therapist in order to better learn to care for Terri. Under oath, the nurses who cared for Terri said his care of her was extraordinary. She never even had a bed sore, nearly unheard of, and that he was very demanding of nursing staff.
#10. Now we have nurses and others coming out of the woodwork saying that they know Terri isn't PVS because (insert blabbering). It's amazing that they never told thsi to the Schindlers! They have written affadavits (if these people are even nurses...most of this is over the internet).
So some freepers think we should believe unsourced material over the internet but not court documents and witnesses that were subject to cross examination under oath.
Anyway, when I first started writing about this last week, I hadn't really made up my mind about this matter. The more I examined it and other freepers started researching it, the more I made up my mind.
And the Wolfson Report, which gives the most thorough history:
http://www.miami.edu/ethics2/schiavo/wolfson%27s%20report.pdf
Then, read:
http://abstractappeal.com/schiavo/trialctorder11-02.txt
Greer's ruling in 2002 after the 5 doctor trial to see if there were any hope for her to improve.
http://www.miami.edu/ethics2/schiavo/2D02-5394.pdf
The Second district court of appeals' (interesting) ruling in support of his decision.
This excellent, official time line of events, including links to other court decisions:
http://www.miami.edu/ethics2/schiavo/timeline.htm
Extra Links
Cruzan decision
http://caselaw.lp.findlaw.com/scripts/getcase.pl?court=US&vol=497&invol=261
More on Cruzan:
http://www.law.umkc.edu/faculty/projects/ftrials/conlaw/cruzan.html
Terri's medical discharge summary:
http://www.terrisfight.org/documents/Humana%20Discharge%20Summary%20050990.pdf
Greer's denial of bone scan - the doctors who actually saw Terri, and the radiologist who did follow-up x-rays saw nothing suspicious.
http://abstractappeal.com/schiavo/trialctorder11-02-scan.pdf
Greer's finding that Carla Iyer and others were not credible:
http://www.terrisfight.org/documents/Order%20Denying%20Pet%20Immed%20Ther%20091703.pdf
Description of the complete 4 hours of video:
http://www.sptimes.com/2003/11/10/Tampabay/Schiavo_tapes__snippe.shtml
Description of the testimony at the 2000 trial to determine Terri's wishes.
http://www.sptimes.com/2003/11/08/Tampabay/Schiavo_s_wishes_reca.shtml
NATIONAL ENQUIRER 1998 featuring Dr. William Hammesfahr (he has ads there)
http://www.floridaneurologicalinstitute.com/national_enquirer_1998.htm
Many mute/deaf people were institutionalized because people thought they were mentally disabled.
I when I was younger, my sister met a young girl who we were told was mentally disabled. She couldn't understand words and was a mess.
My sister, who didn't know one blessed thing about sign language (I didn't know such a language existed for years), started using the most basic things to get through to this girl. Note: In ignorance I just thought deaf people were waving their hands around. Sigh.
It turned out they had never tested this girl's hearing when she was small. I can still remember to this day and it's been oh, almost 40 years, the smile on that girl's face when she realized someone was 'talking' with her. I don't know if they were ever able to get her to speak clearly, because of the deafness, but she and my sister would go a mile a minute with the system they cooked up together.
It is an experience that humbles you.
They were the same age - little girls.
My sister didn't know she wasn't supposed to be able to communicate with this girl.
It really is amazing what people can do when they don't know they can't...!
She'd probably die of embarrasment if she knew how clearly I remember that time and event, because she did not know how important a thing she did.
Thank you so much for posting that exchange from CNN. I caught the very tail end of it and deeply resented Anderson Cooper's tone which-- in my opinion --sought to paint Bro. O'Donnell as a liar. All in the name of CNN wanting to be "impartial." Sick stuff.
Thanks! I spent a lot of the morning reading at that site. This just has to be much more than Terri -- whatever they are all hiding is really bad IMHO.
Sure, Terri feels pain, for why would they give her ibuprophen? This is a crime by judicial terrorists!
God help us. We are a nation of people trying to help Iraqis to be free, when we are not even free ourselves.
Yeah, so did I.
I swear, all that's missing on that man is the moustache.
of course she's doing poorly. I hope no one ever withholds food and water from you for even one day.
Even if she so much as twitches an eye it better be over for them.
He is actually referring to the testimony accepted by Judge Greer. Many neurologists have said that she is not in a PVS. So she has been correctly diagosed for as long as she has been misdiagnosed. Nurses who have cared for her have signed under oath sworn affidavits that she is congnitive.
And yes, it is desperation - a woman is dying by state sanctioned homicide.
If Terri is given a FAIR trial, and it's discovered that MS is WRONG for what he's done to Terri, then this greer cretin is JUST AS WRONG as MS and can be held just as RESPONSIBLE/GUILTY.
"I agree. The right decision has been made many years ago, unfortunately it took until now to be carried out."
You two are absolutely wrong, unquestionable. Look at a video of her responding to her dad when he recalls to her how she used to roll her eyes back as a child to shake up her mom. Unquestionably not PVS. Sorry I don't know the link. It was in one of these Freeper threads.
Yes, there's a metal stimulator implanted in her brain, it would play hell with her tissue in an MRI because of the magnetism.
What does Judge Greer personally gain by Terri being murdered?
Later, fat, Quid Pro Quo's from the institutions who will have the major precedents set for when they finally jump on the bandwagon of socialized medicine.
Gotta keep those costs down doncha know?...
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