http://www.sltrib.com/sltrib/neighborhooddaviscounty/52937873-123/troop-zack-care-family.html.csp
link if you want to see the pictures.
Bountiful mom runs New York City Marathon for her son
Fundraiser • Run aimed at raising research money into rare skin disorder.
By Carol Lindsay
Special to The Tribune
Published: December 5, 2011 11:26AM
Updated: December 6, 2011 01:27PM
Carol Lindsay | Special to the Tribune KayDee Troop ran the New York City Marathon to raise money for research into a rare skin disorder that affects her son, Zack, left. The Bountiful mom, who is holding her daughter Elizabeth, wears the medal she brought home from that race. Not even a broken leg could keep KaDee Troop from competing in one of the world’s largest marathons.
The Bountiful mom wasn’t doing it for herself. She was running the New York City Marathon for her son.
Troop, whose 9-year-old son Zack suffers from a rare skin disorder that makes it painful to perform even the simplest of daily tasks, ran the streets of New York City in early November to raise research money for a condition known as Recessive Dystrophic Epidermolysis Bullosa.
It took her six hours and 40 minutes to complete the race. But she did it — with a broken leg — and placed 46,147th out of 46,795 runners.
“It was awesome to be able to run in honor of my son,” she said. “Every day of his life is a marathon. He goes through so much and he does it with a smile.”
Because of his genetic disorder, Zack develops wounds, similar to third-degree burns, on his body when he encounters the slightest friction from everyday activities. Other wounds can form internally along, say, the digestive tract.
It’s an uncommon ailment that manifests itself in about one in a million newborns.
When asked about why his body is covered in bandages, Zack, who attends third grade at Bountiful’s Tolman Elementary, is apt to say that he got in a fight with a bear or a Tyrannosaurus rex. Why? Because he gets tired of explaining his condition.
Zack was born in 2002 in Nevada. Not only was he missing skin from the back of his head, elbows and legs — not to mention his fingers, which had been sucked down to the tendons while in the womb — he was missing a family.
His birth parents had been unable to care for him and, consequently, had sought out an adoption agency to take him. Although some adoption agencies were reluctant because of Zack’s medical needs and uncertain future, one agreed to look for a permanent home.
That search led to the Troop family.
The Troops, who had begun the process of adopting a baby, were told about an infant with a life-threatening condition that desperately needed a home. The child wasn’t expected to survive a year.
The family went to meet the baby, who had just been discharged from intensive care, and immediately fell in love.
“We knew he was ours,” KaDee Troop said.
With some help from a Vernal family — whose teenage daughter has the same disorder — the Troops learned to care for their fragile boy.
“The mom knew just what to do,” said Troop, who recalled the family arriving on her Bountiful doorstep after learning, from a pediatrician, of their plight. “We were struggling with how to care for this infant covered with open wounds. It was amazing to watch this mom. She gave him a bath and showed us how to dress him and care for him. She showed us what to do and from then on we had hope.”
And so this child, who wasn’t supposed to last a year, is now halfway through grade school.
Although he has challenges — he spends two hours a day getting his bandages changed, he needs a school aide to help him with instruments as simple as scissors, he relies on a voice-activated computer to avoid the painful process of writing — Zack remains an active boy.
He began reading at age 3 and now ranks above grade level for both reading and math. He loves to swim. He enjoys travel. And he plays lots of video games.
“We work hard to make sure there are wonderful things that Zack can do,” Troop said. “He pretty much does anything he wants to do. Sometimes we just have to find a way to adapt.”
You might say that Troop has done the same. Despite breaking her leg during training, she decided to not to give up on the New York City Marathon. With strangers cheering her on during the 26-mile route — offering suckers, tissues and drinks — the race turned out to be one of the highlights of Troop’s life.
“I think it was great that she did it,” Zack said.
Having crossed that finish line, Troop raised $3,588 for the Jackson Gabriel Silver Foundation to pay for research.
closeup@sltrib.com
—
Want to donate?
O KaDee Troop is raising money for research into Recessive Dystrophic Epidermolysis Bullosa online
> www.crowdrise.com/teamjgsfhalf/fundraiser/KaDeeTroop
--------------------------------------------------------------------------------
© 2011 The Salt Lake Tribune
Bountiful mom runs New York City Marathon for her son
By Carol Lindsay
Special to The Tribune
Current Job Postings
Wednesday, December 7, 2011
Sunday, December 4, 2011
Found this on another site and tweaked it a little for you
If we had a dollar every time we heard or read the question “Is the CNA test hard”, we’d be rolling in the dough. That bit of metaphor aside, many people planning to take the CNA examination are worried about how challenging it is. Think of it this way: it is an exam meant to identify which individuals are fit to provide assistance to nurses in America – a country with some of the strictest health service regulations in the world. Of course there is a certain level of stringency. Instead of asking whether the CNA exam is difficult, why not take steps to make things easier for yourself?
Your first and foremost guide to the exam will be your examinee handbook. We give you a copy in class and it is available at utahcna.com. This is your primer to everything about the exam – in fact the only thing it does not cover is the actual set of questions in the exam. Read through it, and read it again, then read it one more time to be sure. If you do not understand something ask us BEFORE you take the test.
There are sites through out the state to take your test at. Where you take your test depends on where you live. If you are in a hurry to take the test you may want to call around and see who has the soonest openings. It is a good idea to actually go to your chosen CNA exam at least once before the exam date, so you can get the location fixed in your mind, and also to look around to get a feel for the place.
Prepare a small pouch or bag containing all the required materials – IDs, pencils, eraser, watch with a second hand. Do not open this pouch or bag except to check if everything is there. Bring only this pouch and your examination identification papers to the venue. Do not bring a large bag or any reference materials or study aids. These will be confiscated and returned only after the test concludes.
Of course, we cannot overlook the most obvious way to make things easier for yourself. Prepare yourself mentally and psychologically for the CNA examination. Review your lessons, practice your hands-on skills, and try to cultivate a state of calm, clear, and critical thought and action.
Don’t make the mistake of eating a very heavy meal before the examination, or anything very greasy either. These might make you feel drowsy or unable to concentrate – or worse might cause some bowel trouble. Also avoid drinking too much before the exam so you don’t have to excuse yourself for toilet breaks.
Waiting for your CNA exam results does not have to be a period of trepidation. Like the nursing examination test and other professional tests, these take time to collate and check. The CNA exam is over, and your worrying won’t change the results. Just relax and be patient. It takes about two weeks to get your results in the mail. They may be posted on the state website before you actually get your results. www.utahcna.com
Good luck all!
Your first and foremost guide to the exam will be your examinee handbook. We give you a copy in class and it is available at utahcna.com. This is your primer to everything about the exam – in fact the only thing it does not cover is the actual set of questions in the exam. Read through it, and read it again, then read it one more time to be sure. If you do not understand something ask us BEFORE you take the test.
There are sites through out the state to take your test at. Where you take your test depends on where you live. If you are in a hurry to take the test you may want to call around and see who has the soonest openings. It is a good idea to actually go to your chosen CNA exam at least once before the exam date, so you can get the location fixed in your mind, and also to look around to get a feel for the place.
Prepare a small pouch or bag containing all the required materials – IDs, pencils, eraser, watch with a second hand. Do not open this pouch or bag except to check if everything is there. Bring only this pouch and your examination identification papers to the venue. Do not bring a large bag or any reference materials or study aids. These will be confiscated and returned only after the test concludes.
Of course, we cannot overlook the most obvious way to make things easier for yourself. Prepare yourself mentally and psychologically for the CNA examination. Review your lessons, practice your hands-on skills, and try to cultivate a state of calm, clear, and critical thought and action.
Don’t make the mistake of eating a very heavy meal before the examination, or anything very greasy either. These might make you feel drowsy or unable to concentrate – or worse might cause some bowel trouble. Also avoid drinking too much before the exam so you don’t have to excuse yourself for toilet breaks.
Waiting for your CNA exam results does not have to be a period of trepidation. Like the nursing examination test and other professional tests, these take time to collate and check. The CNA exam is over, and your worrying won’t change the results. Just relax and be patient. It takes about two weeks to get your results in the mail. They may be posted on the state website before you actually get your results. www.utahcna.com
Good luck all!
These kids need a home
All these three have in the world are each other. They need a forever family. They are available through the foster care system. Their parents rights have been terminated.
Tuesday, November 29, 2011
Really, this woman was an RN
Kearns woman to stand trial for murder in death of disabled woman
By Aaron Falk
The Salt Lake Tribune
Published: November 28, 2011 06:05PM
Courtesty photo Christina D. Harms A Kearns woman accused of abusing a 22-year-old disabled woman — binding her feet and tying her to a bar in a small closet before her death — has been ordered to stand trial on a charge of murder.
Defense attorneys for Cassandra Marie Shepard argued the charge should be reduced to manslaughter, calling the circumstances of Christina Harms’ death in March “ambiguous.”
“The evidence ... does not show an intentional or knowing murder,” defense attorneys wrote in documents filed in 3rd District Court following an October preliminary hearing.
On Monday, however, Judge Randall Skanchy disagreed, ordering Shepard to stand trial on charges of first-degree felony aggravated abuse of a vulnerable adult and second-degree felony obstructing justice in addition to the murder count.
“It didn’t happen!” Shepard, 28, said in court, as Skanchy listed off some of the allegations against her.
Prosecutors have said Shepard, a registered nurse, “knew she was creating a grave risk of death,” when she bound Harms’ arms and legs and placed her in a closet with little food and water — “all while plying the victim with high doses of sedatives to keep her quiet and conforming.”
Harms, who had fetal alcohol syndrome, which caused her to function at preteen levels, died of abuse and neglect, a medical examiner testified at the October hearing. The woman was severely dehydrated and had high levels of a sedative, possibly Benadryl, in her system.
Defense attorneys argued in court documents that Harms did not die as a result of being tied up or placed in the closet. They said Harms was well-fed, bordering on obese. She had wounds on her arms, but they were being treated. And the sedative levels could be consistent with someone who had developed a tolerance to the drug, the medical examiner said.
Shepard, Harms’ legal guardian, was the one who called 911 and was in “extreme emotional distress” when police arrived, her defense attorneys said.
“Evidence of abuse is one thing,” the defense wrote. “Evidence of knowledge that the probability of death was highly likely is something else entirely.”
Shepard’s next court appearance is set for Jan. 9.
Shepard’s stepfather, 52-year-old Dale Robert Beckering, was convicted earlier this month on a lesser charge of second-degree felony aggravated abuse of a vulnerable adult. Shepard’s mother, 50-year-old Sherrie Lynn Beckering, is scheduled to stand trial in January on a first-degree felony charge of aggravated abuse of a vulnerable adult.
afalk@sltrib.com
--------------------------------------------------------------------------------
© 2011 The Salt Lake Tribune Kearns woman to stand trial for murder in death of disabled womanBy Aaron Falk
The Salt Lake Tribune
By Aaron Falk
The Salt Lake Tribune
Published: November 28, 2011 06:05PM
Courtesty photo Christina D. Harms A Kearns woman accused of abusing a 22-year-old disabled woman — binding her feet and tying her to a bar in a small closet before her death — has been ordered to stand trial on a charge of murder.
Defense attorneys for Cassandra Marie Shepard argued the charge should be reduced to manslaughter, calling the circumstances of Christina Harms’ death in March “ambiguous.”
“The evidence ... does not show an intentional or knowing murder,” defense attorneys wrote in documents filed in 3rd District Court following an October preliminary hearing.
On Monday, however, Judge Randall Skanchy disagreed, ordering Shepard to stand trial on charges of first-degree felony aggravated abuse of a vulnerable adult and second-degree felony obstructing justice in addition to the murder count.
“It didn’t happen!” Shepard, 28, said in court, as Skanchy listed off some of the allegations against her.
Prosecutors have said Shepard, a registered nurse, “knew she was creating a grave risk of death,” when she bound Harms’ arms and legs and placed her in a closet with little food and water — “all while plying the victim with high doses of sedatives to keep her quiet and conforming.”
Harms, who had fetal alcohol syndrome, which caused her to function at preteen levels, died of abuse and neglect, a medical examiner testified at the October hearing. The woman was severely dehydrated and had high levels of a sedative, possibly Benadryl, in her system.
Defense attorneys argued in court documents that Harms did not die as a result of being tied up or placed in the closet. They said Harms was well-fed, bordering on obese. She had wounds on her arms, but they were being treated. And the sedative levels could be consistent with someone who had developed a tolerance to the drug, the medical examiner said.
Shepard, Harms’ legal guardian, was the one who called 911 and was in “extreme emotional distress” when police arrived, her defense attorneys said.
“Evidence of abuse is one thing,” the defense wrote. “Evidence of knowledge that the probability of death was highly likely is something else entirely.”
Shepard’s next court appearance is set for Jan. 9.
Shepard’s stepfather, 52-year-old Dale Robert Beckering, was convicted earlier this month on a lesser charge of second-degree felony aggravated abuse of a vulnerable adult. Shepard’s mother, 50-year-old Sherrie Lynn Beckering, is scheduled to stand trial in January on a first-degree felony charge of aggravated abuse of a vulnerable adult.
afalk@sltrib.com
--------------------------------------------------------------------------------
© 2011 The Salt Lake Tribune Kearns woman to stand trial for murder in death of disabled womanBy Aaron Falk
The Salt Lake Tribune
Monday, November 28, 2011
Four drugs responsible for majority of visits to ER, according to CDC
Four drugs responsible for majority of visits to ER, according to CDC
The State Column | Staff | Sunday, November 27, 2011
A study released this week finds that four drugs are mainly responsible for most of the emergency room visits in the U.S.
The study, by researchers from the US Centers for Disease Control and Prevention, singles out four drugs and drug classes — warfarin, oral antiplatelet medications, insulins, and oral hypoglycemic agents. The study also noted that better management of antithrombotic and anti-diabetic drugs could help avoid thousands of emergency admissions.
The study, published Thursday in the New England Journal of Medicine, highlights a couple of key issues doctors and patients need to be acutely aware of. The first is adverse reactions to medication, and the second is unintentional overdoses.
According to researchers, nearly 100,000 hospitalizations every year are linked to adverse drug events such as allergic reactions and unintentional overdoses. Nearly half, or 48.1 percent, of those hospitalized were adults 80 years old or older.
“These data suggest that focusing safety initiatives on a few medicines that commonly cause serious, measurable harms can improve care for many older Americans,” said lead study author Dr. Daniel Budnitz, director of the CDC’s medication safety program. “Blood thinners and diabetes medicines often require blood testing and dosing changes, but these are critical medicines for older adults with certain medical conditions.”
“Of the thousands of medications available to older patients, a small group of blood thinners and diabetes medications caused a high proportion of emergency hospitalizations for adverse drug events among elderly Americans,” he added.
The study comes as the Obama administration has sought to decrease the number of emergency room visits by upwards of 20 percent. The new healthcare law could results in nearly 32 million newly insured people visiting emergency rooms already crammed beyond capacity, according to experts on healthcare facilities. President Obama has urged preventative practices in order to lower the rate of emergency rooms visits.
The State Column | Staff | Sunday, November 27, 2011
A study released this week finds that four drugs are mainly responsible for most of the emergency room visits in the U.S.
The study, by researchers from the US Centers for Disease Control and Prevention, singles out four drugs and drug classes — warfarin, oral antiplatelet medications, insulins, and oral hypoglycemic agents. The study also noted that better management of antithrombotic and anti-diabetic drugs could help avoid thousands of emergency admissions.
The study, published Thursday in the New England Journal of Medicine, highlights a couple of key issues doctors and patients need to be acutely aware of. The first is adverse reactions to medication, and the second is unintentional overdoses.
According to researchers, nearly 100,000 hospitalizations every year are linked to adverse drug events such as allergic reactions and unintentional overdoses. Nearly half, or 48.1 percent, of those hospitalized were adults 80 years old or older.
“These data suggest that focusing safety initiatives on a few medicines that commonly cause serious, measurable harms can improve care for many older Americans,” said lead study author Dr. Daniel Budnitz, director of the CDC’s medication safety program. “Blood thinners and diabetes medicines often require blood testing and dosing changes, but these are critical medicines for older adults with certain medical conditions.”
“Of the thousands of medications available to older patients, a small group of blood thinners and diabetes medications caused a high proportion of emergency hospitalizations for adverse drug events among elderly Americans,” he added.
The study comes as the Obama administration has sought to decrease the number of emergency room visits by upwards of 20 percent. The new healthcare law could results in nearly 32 million newly insured people visiting emergency rooms already crammed beyond capacity, according to experts on healthcare facilities. President Obama has urged preventative practices in order to lower the rate of emergency rooms visits.
Artificial pancreas could be 'holy grail' for Type 1 diabetics
Artificial pancreas could be 'holy grail' for Type 1 diabetics - CNN.com
By Saundra Young , CNN Medical Senior Producer
2011-11-26T13:31:59Z CNN.com
A trial patient for the Juvenile Diabetes Research Foundation's Artificial Pancreas Project tests the device.
(CNN) -- Kerry Morgan was just 3 years old when she participated in her first clinical trial for type 1 diabetes prevention. She didn't have the disease, but her 7-year old sister did and there was concern that she might develop it, too. During the trial she was given one shot of insulin a day in the hope that it would stave off the disease, but a year later, she was officially diagnosed.
"I remember a lot of things changed." Morgan said. "I went from having juice every day and M&Ms to not having sugar at all. I remember getting shots every day, finger pricks, my parents had to hold me down."
School, she says was difficult. "You had to let teachers know what was going on. You had a special relationship with the nurse because she had to check your blood sugar every day before going to lunch."
At 14 she entered a second trial, this one at the University of Virginia, for a continuous glucose monitoring system called The Navigator. It was at UVA that she first learned about the artificial pancreas. A high school senior at 18 now, she has participated in four clinical trials and two have involved artificial pancreas systems.
"It was awesome. I've never done anything quite like it before. For the two days that I was on the artificial pancreas I experienced normalcy. I wasn't checking myself every five seconds and giving myself insulin because it was doing it for me."
In type 1 diabetics, the pancreas makes very little or no insulin, a hormone that controls glucose levels, or the amount of sugar in your blood. Patients must constantly check their levels throughout the day, determine how much insulin they need to lower their blood sugar and administer the proper amount using a pump or syringe. Drops or spikes in blood sugar can be extremely dangerous. If the level is too low -- a condition called hypoglycemia -- patients can experience shakiness, confusion, trouble speaking, seizures, even coma and death. A level that is too high -- hyperglycemia -- can cause excessive thirst, frequent urination and cardiac arrhythmia. Left untreated, hyperglycemia can lead to a number of serious complications including vision loss and nerve damage.
An artificial pancreas mimics the glucose regulating function of a healthy pancreas. The automated device features a sensor that's placed under the skin that measures blood sugar. Information from this continuous glucose monitor is sent to a receiver and an insulin pump delivers insulin in controlled amounts. A glucose meter calibrates the sensor. Sophisticated software checks the blood sugar in the body and automatically provides the correct dose of insulin needed at the right time.
"When you have diabetes, every second you're thinking about your blood sugar," says Morgan. "You're wondering if you're high, if you're low, if you're OK, if you're giving yourself enough insulin, if you're not giving yourself enough insulin. With the artificial pancreas it takes that worry away because it's doing it for you. It lets you know if something's wrong. That way you're not always worrying about your blood sugar."
The device has not yet been approved by the U.S. Food and Drug Administration. In June the agency issued a draft guidance seeking input from the industry and researchers on an early version of the artificial pancreas, called the low glucose suspend system. It's a backup for diabetics experiencing hypoglycemia. Patients still have to monitor their levels and give themselves insulin if necessary, but the low glucose suspend system temporarily reduces or stops the insulin flow in the event of an episode.
There are two types: A reactive low glucose suspend system that stops insulin infusion when a predetermined level has been reached, and a predictive low glucose suspend system that anticipates a hypoglycemic event based on the current blood sugar level and how fast those levels are falling.
Dr. Charles Zimliki chairs the FDA's Artificial Pancreas Critical Path Initiative and he is a type 1 diabetic. Testifying before a Senate committee in June, he said the FDA is committed to seeing the device come to market but is proceeding with caution.
"While the potential benefits are enormous, an artificial pancreas system is considered a significant-risk device, meaning it presents a potential for serious risk to the health, safety or welfare of a patient. If not properly designed, use of an artificial pancreas device in an outpatient setting can place patients at significant risk, because the device controls the administration of insulin without the oversight of health care professionals."
The FDA is expected to release new guidance for future generations of the artificial pancreas systems on December 1. The Juvenile Diabetes Research Foundation has been working closely with the FDA on the artificial pancreas. It says low glucose suspend systems have been in use in more than 40 countries for the last 2½ years and the process in the United States is taking much too long.
"Here in the U.S. we're now almost three years behind and the first study to test these systems is just going to launch in the next month, which means it's going to be another year or so before patients even have access," said Aaron Kowalski, assistant vice president of treatment therapies for the foundation. "What JDRF is advocating for is to ensure that people here in the U.S. have access to these tools in a timely manner."
The FDA says other countries have different regulatory systems in place that do not require the same safety and effectiveness data for a product of this level of risk.
Tom Brobson, a 51-year-old Christmas tree farmer and the national director for donor relations at JDRF was diagnosed eight years ago with type 1 diabetes. "I think they're getting hung up on better when good enough can do the job. You can't get better until it's out there being used. We know that technology isn't perfect, but what we're talking about are significant improvements and enhancements over what we have today that can significantly reduce the daily burden of living with this disease, improve quality of lives and save lives."
Brobson has been participating in artificial pancreas clinical trials at UVA since 2007. "It's been awesome, fantastic, frankly everything I could ever imagine it to be and then some," he says. "The open question for me was could a computer system using off-the-shelf technologies do a better job of controlling my blood sugar than I was already doing for myself and the answer turned out to be overwhelmingly yes."
Without it, Brobson says he has to spend every minute managing his diabetes. "I have to be my own pancreas 24 hours a day. Last thing at night, first thing in the morning and often in the middle of the night. When the artificial pancreas took over, that was a real power moment. It kept me perfect from 8 p.m. to 8 a.m. When the artificial pancreas took over moment to moment when it was actively assisting me in the management of my disease, it was a life changing moment and it was life changing because I didn't have to think about my diabetes every moment of the day."
Dr. Michelle Magee is an endocrinologist and director of the MedStar Diabetes Institute at Washington Hospital Center in Washington, D.C. "The data from other countries showed that the system could be used safely and effectively. It's been somewhat disappointing that it has taken so long to get approval here."
She says the long awaited system offers hope to patients. "For people with type 1 diabetes, the artificial pancreas has been kind of the holy grail of technology to support self management of diabetes. It's not going to cure it, but it's going to be a huge step in the right direction. Once it's approved and can be used it will be fantastic."
According to the Juvenile Diabetes Research Foundation, about 80 people a day are diagnosed with type 1 diabetes. Approximately 3 million Americans are living with the disease. Most of them only have healthy blood sugars 30% of the day. The foundation says it has spent $1.5 billion on diabetes research, $40 million of that on research on artificial pancreas systems.
"Our goal is to drive the development of artificial pancreas systems," Kowalski said. "This could not only improve tremendously glucose control, and help reduce the risk of these terrible diabetes complications, it could also help people with diabetes live easier. The bottom line is diabetes is a 24 hour a day, 7 day a week, 365 day a year job and if we can make some of that easier that would be a huge step forward."
Morgan agrees. "I think it's superimportant, I think next to having a cure for diabetes it's the big thing. Because it's such an instrumental piece of equipment it can allow you to live closer to what we consider normal than anything that we have now."
By Saundra Young , CNN Medical Senior Producer
2011-11-26T13:31:59Z CNN.com
A trial patient for the Juvenile Diabetes Research Foundation's Artificial Pancreas Project tests the device.
(CNN) -- Kerry Morgan was just 3 years old when she participated in her first clinical trial for type 1 diabetes prevention. She didn't have the disease, but her 7-year old sister did and there was concern that she might develop it, too. During the trial she was given one shot of insulin a day in the hope that it would stave off the disease, but a year later, she was officially diagnosed.
"I remember a lot of things changed." Morgan said. "I went from having juice every day and M&Ms to not having sugar at all. I remember getting shots every day, finger pricks, my parents had to hold me down."
School, she says was difficult. "You had to let teachers know what was going on. You had a special relationship with the nurse because she had to check your blood sugar every day before going to lunch."
At 14 she entered a second trial, this one at the University of Virginia, for a continuous glucose monitoring system called The Navigator. It was at UVA that she first learned about the artificial pancreas. A high school senior at 18 now, she has participated in four clinical trials and two have involved artificial pancreas systems.
"It was awesome. I've never done anything quite like it before. For the two days that I was on the artificial pancreas I experienced normalcy. I wasn't checking myself every five seconds and giving myself insulin because it was doing it for me."
In type 1 diabetics, the pancreas makes very little or no insulin, a hormone that controls glucose levels, or the amount of sugar in your blood. Patients must constantly check their levels throughout the day, determine how much insulin they need to lower their blood sugar and administer the proper amount using a pump or syringe. Drops or spikes in blood sugar can be extremely dangerous. If the level is too low -- a condition called hypoglycemia -- patients can experience shakiness, confusion, trouble speaking, seizures, even coma and death. A level that is too high -- hyperglycemia -- can cause excessive thirst, frequent urination and cardiac arrhythmia. Left untreated, hyperglycemia can lead to a number of serious complications including vision loss and nerve damage.
An artificial pancreas mimics the glucose regulating function of a healthy pancreas. The automated device features a sensor that's placed under the skin that measures blood sugar. Information from this continuous glucose monitor is sent to a receiver and an insulin pump delivers insulin in controlled amounts. A glucose meter calibrates the sensor. Sophisticated software checks the blood sugar in the body and automatically provides the correct dose of insulin needed at the right time.
"When you have diabetes, every second you're thinking about your blood sugar," says Morgan. "You're wondering if you're high, if you're low, if you're OK, if you're giving yourself enough insulin, if you're not giving yourself enough insulin. With the artificial pancreas it takes that worry away because it's doing it for you. It lets you know if something's wrong. That way you're not always worrying about your blood sugar."
The device has not yet been approved by the U.S. Food and Drug Administration. In June the agency issued a draft guidance seeking input from the industry and researchers on an early version of the artificial pancreas, called the low glucose suspend system. It's a backup for diabetics experiencing hypoglycemia. Patients still have to monitor their levels and give themselves insulin if necessary, but the low glucose suspend system temporarily reduces or stops the insulin flow in the event of an episode.
There are two types: A reactive low glucose suspend system that stops insulin infusion when a predetermined level has been reached, and a predictive low glucose suspend system that anticipates a hypoglycemic event based on the current blood sugar level and how fast those levels are falling.
Dr. Charles Zimliki chairs the FDA's Artificial Pancreas Critical Path Initiative and he is a type 1 diabetic. Testifying before a Senate committee in June, he said the FDA is committed to seeing the device come to market but is proceeding with caution.
"While the potential benefits are enormous, an artificial pancreas system is considered a significant-risk device, meaning it presents a potential for serious risk to the health, safety or welfare of a patient. If not properly designed, use of an artificial pancreas device in an outpatient setting can place patients at significant risk, because the device controls the administration of insulin without the oversight of health care professionals."
The FDA is expected to release new guidance for future generations of the artificial pancreas systems on December 1. The Juvenile Diabetes Research Foundation has been working closely with the FDA on the artificial pancreas. It says low glucose suspend systems have been in use in more than 40 countries for the last 2½ years and the process in the United States is taking much too long.
"Here in the U.S. we're now almost three years behind and the first study to test these systems is just going to launch in the next month, which means it's going to be another year or so before patients even have access," said Aaron Kowalski, assistant vice president of treatment therapies for the foundation. "What JDRF is advocating for is to ensure that people here in the U.S. have access to these tools in a timely manner."
The FDA says other countries have different regulatory systems in place that do not require the same safety and effectiveness data for a product of this level of risk.
Tom Brobson, a 51-year-old Christmas tree farmer and the national director for donor relations at JDRF was diagnosed eight years ago with type 1 diabetes. "I think they're getting hung up on better when good enough can do the job. You can't get better until it's out there being used. We know that technology isn't perfect, but what we're talking about are significant improvements and enhancements over what we have today that can significantly reduce the daily burden of living with this disease, improve quality of lives and save lives."
Brobson has been participating in artificial pancreas clinical trials at UVA since 2007. "It's been awesome, fantastic, frankly everything I could ever imagine it to be and then some," he says. "The open question for me was could a computer system using off-the-shelf technologies do a better job of controlling my blood sugar than I was already doing for myself and the answer turned out to be overwhelmingly yes."
Without it, Brobson says he has to spend every minute managing his diabetes. "I have to be my own pancreas 24 hours a day. Last thing at night, first thing in the morning and often in the middle of the night. When the artificial pancreas took over, that was a real power moment. It kept me perfect from 8 p.m. to 8 a.m. When the artificial pancreas took over moment to moment when it was actively assisting me in the management of my disease, it was a life changing moment and it was life changing because I didn't have to think about my diabetes every moment of the day."
Dr. Michelle Magee is an endocrinologist and director of the MedStar Diabetes Institute at Washington Hospital Center in Washington, D.C. "The data from other countries showed that the system could be used safely and effectively. It's been somewhat disappointing that it has taken so long to get approval here."
She says the long awaited system offers hope to patients. "For people with type 1 diabetes, the artificial pancreas has been kind of the holy grail of technology to support self management of diabetes. It's not going to cure it, but it's going to be a huge step in the right direction. Once it's approved and can be used it will be fantastic."
According to the Juvenile Diabetes Research Foundation, about 80 people a day are diagnosed with type 1 diabetes. Approximately 3 million Americans are living with the disease. Most of them only have healthy blood sugars 30% of the day. The foundation says it has spent $1.5 billion on diabetes research, $40 million of that on research on artificial pancreas systems.
"Our goal is to drive the development of artificial pancreas systems," Kowalski said. "This could not only improve tremendously glucose control, and help reduce the risk of these terrible diabetes complications, it could also help people with diabetes live easier. The bottom line is diabetes is a 24 hour a day, 7 day a week, 365 day a year job and if we can make some of that easier that would be a huge step forward."
Morgan agrees. "I think it's superimportant, I think next to having a cure for diabetes it's the big thing. Because it's such an instrumental piece of equipment it can allow you to live closer to what we consider normal than anything that we have now."
Saturday, November 26, 2011
Mother's word is law
The nurses in the Women's Health Division seek to satisfy not only the newborns' appetites but also the parents' desires for when and what to feed their infants. To improve communication between parents and nurses, the Nursing Leadership Team developed the Infant Feeding Plan.
"With this new tool, the baby's nurse talks directly to the mom or parent to avoid misunderstandings," said Jennifer Peterman, RN, BSN, IBCLC, a certified lactation consultant in the Women's Health Division.
The Infant Feeding Plan began as an informed consent document. It has evolved into a communication tool initiated as part of the mother's electronic medical record. It indicates whether the parents want the infant to be breast-fed, formula fed or a combination of the two.
"Asking about a mother's preferred method of feeding for her new baby has always been a question labor and delivery nurses have asked their patients," said Ryan Olivere, RNC-OB, MSN, a clinical nurse specialist in the Labor & Delivery/Perinatal Evaluation Center. "This program has helped to streamline the process and has brought a patient-centered focus into the care we provide. The patient is now more active in the care she and her baby receive."
A paper copy of the infant feeding plan remains at the crib side, which means any nurse who cares for the baby in the nursery or intensive care nursery has easy access to the parents' wishes, Peterman said. If the parents change their minds about feeding method, feeding schedule or use of a pacifier, the document is updated and signed by the baby's nurse and a parent.
"The most compelling evidence [of the program[']s success] was actually observing mom, nurse and pediatrician reviewing and adapting the infant feeding plan at the crib side," said Marilyn Stringer, WHNP-BC, PhD, RDMS, FAAN, a clinician educator and professor of women's health nursing.
While the main goal of the feeding plan is to ensure nurses understand the wishes of their young patients' parents, the improvement in communication has yielded another positive outcome — breast-feeding rates have risen. "[In] the fiscal year preceding this initiative, the hospital breast-feeding initiation rate was 68%," Peterman wrote in an abstract submitted to the Association of Women's Health, Obstetric and Neonatal Nurses. "The fiscal year that started a few months after this plan was introduced had a breast-feeding initiation rate of 74%."
The program won the praise of The Joint Commission, which named it a Best Practice Model of Care. "JCAHO loved it when they came in," Peterman said. "They really thought it was good care."
"With this new tool, the baby's nurse talks directly to the mom or parent to avoid misunderstandings," said Jennifer Peterman, RN, BSN, IBCLC, a certified lactation consultant in the Women's Health Division.
The Infant Feeding Plan began as an informed consent document. It has evolved into a communication tool initiated as part of the mother's electronic medical record. It indicates whether the parents want the infant to be breast-fed, formula fed or a combination of the two.
"Asking about a mother's preferred method of feeding for her new baby has always been a question labor and delivery nurses have asked their patients," said Ryan Olivere, RNC-OB, MSN, a clinical nurse specialist in the Labor & Delivery/Perinatal Evaluation Center. "This program has helped to streamline the process and has brought a patient-centered focus into the care we provide. The patient is now more active in the care she and her baby receive."
A paper copy of the infant feeding plan remains at the crib side, which means any nurse who cares for the baby in the nursery or intensive care nursery has easy access to the parents' wishes, Peterman said. If the parents change their minds about feeding method, feeding schedule or use of a pacifier, the document is updated and signed by the baby's nurse and a parent.
"The most compelling evidence [of the program[']s success] was actually observing mom, nurse and pediatrician reviewing and adapting the infant feeding plan at the crib side," said Marilyn Stringer, WHNP-BC, PhD, RDMS, FAAN, a clinician educator and professor of women's health nursing.
While the main goal of the feeding plan is to ensure nurses understand the wishes of their young patients' parents, the improvement in communication has yielded another positive outcome — breast-feeding rates have risen. "[In] the fiscal year preceding this initiative, the hospital breast-feeding initiation rate was 68%," Peterman wrote in an abstract submitted to the Association of Women's Health, Obstetric and Neonatal Nurses. "The fiscal year that started a few months after this plan was introduced had a breast-feeding initiation rate of 74%."
The program won the praise of The Joint Commission, which named it a Best Practice Model of Care. "JCAHO loved it when they came in," Peterman said. "They really thought it was good care."
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