DiversityNursing Blog

'Bubble girl' Is Allergic To Life

Posted by Erica Bettencourt

Fri, May 01, 2015 @ 11:31 AM

By Jacque Wilson and Deborah Brunswick

www.cnn.com 

150429173910 orig allergic to life brynn duncan mast cell activation syndrome 00010110 large 169 resized 600The cracker or the bite of ice cream -- Brynn Duncan still isn't sure which one sent her into anaphylactic shock that day. Her food allergies change so frequently, keeping track is almost pointless. 

It was just another day with another massive allergic reaction. 

She can always tell when one is coming on. "I just get this overwhelming sense of -- they call it impending doom." Her labradoodle, Moose, starts alerting, licking her hands frantically.

"I'll feel like I'm being stabbed in the stomach, and then it gets hard to breathe and my throat and tongue start swelling. And we have to treat it really fast." 

On that particular day in March, multiple EpiPens didn't slow the reaction. The paramedics who arrived to take Brynn to Greenville Memorial Hospital, or "Hotel Greenville" as she likes to call it, knew her well. When she asked for her security blanket, they knew to hand her her smartphone.

"New day, new crisis," Brynn quips as she tells the story, as if it's about her first day of college or a shopping trip gone wrong. It might as well be. When you're allergic to life, a near-death experience is no big deal. 

Center of attention

Less than a week after her trip to the hospital, Brynn, 21, is back at home in Easley, South Carolina. She lies on her back, her head near the foot of her bed, chattering away as her mom changes the access to her chest port. 

Melissa Duncan, a paralegal by day, dons a mask and surgical gloves before disinfecting the area around the tube that's connected to Brynn's jugular vein. The disinfectant burns, and Brynn's blood pressure hits 150/102. Her heart rate rockets to 128. 

"The meds we have to give her to keep her alive, she reacts to," Melissa says, shaking her head. "Never in a million years did I think I would be doing this. "

Brynn was seemingly a normal kid -- until she wasn't. Yes, she was a fussy baby. Yes, she got sick often as a child, Melissa muses out loud -- but what kid doesn't? Brynn was also incredibly energetic, always the center of attention. Her father, Barry, jokingly rues the day she learned to talk. She started taekwondo at the age of 9 and had her black belt by the time she was 11. That was the same year doctors diagnosed Brynn with IBS, or irritable bowel syndrome. 

"She's always been --" Melissa Duncan pauses. 

"High maintenance!" Brynn fills in with a laugh. 

It wasn't until shortly before her 16th birthday in 2010 that Brynn had her first serious allergic reaction. The next two years became a blur of sick days and doctors' appointments.

Brynn saw specialist after specialist. The gastrointestinologist diagnosed her with gastroparesis, or partial paralysis of the stomach muscles. A cardiologist said she had POTS, or Postural Orthostatic Tachycardia Syndrome -- meaning that when she stood up for longer than a few minutes, her blood pressure dropped, leaving her light-headed and nauseated. A Wake Forest doctor diagnosed her with Ehlers-Danlos syndrome, a connective tissue disorder that causes fragile skin and overly flexible joints. 

After doing hours of research, Melissa, Barry and Brynn came up with their own diagnosis: mast cell disease. They found a specialist online, Dr. Lawrence Afrin, who at the time was working in Charleston. They waited nearly nine months to see him, but hearing him confirm their suspicions was life-changing.

Mast cells are the regulators of your immune system. They're the ones that release histamine when a bug bites, or when you come into contact with an allergen. They basically sound the alarm that lets the rest of your immune system know something is wrong.

Until recently, the only mast cell disease doctors had identified was mastocytosis, which is characterized by "abnormal proliferation and activation" of the body's mast cells -- meaning there are way too many and they act in strange ways. 

But in the last few years doctors such as Afrin have started to recognize that there are many different layers to mast cell disease. For instance, Brynn has mast cell activation syndrome, meaning her mast cells act strangely, but they're not growing in number. 

"It's like I'm living in a 24/7 allergic reaction," Brynn explains simply. 

Fruit, vegetables, milk, soy, nuts, smoke, perfume, the sun -- you name it, Brynn is allergic to it. But it's not really about the specifics; the allergens change depending on how "angry" her mast cells are that day, she says. On good days, she can eat small amounts of plain meat or mashed potatoes. On bad days, even using her feeding tube causes her extreme pain. 

Not everyone with mast cell activation syndrome has it as bad as Brynn does. "Oh God, no," Afrin says when asked. "No, no, no, no." 

But mast cells are located in your connective tissue, including your skin and the lining of your stomach and intestine. They can affect every system in the body, Afrin says, so the disease is capable of causing all the symptoms Brynn experiences.

You have to ask yourself, he says: "Is this poor patient so uniquely unlucky to have acquired so many different, independent problems? Or is it more likely that there is just one thing going on?"

Of course, having a diagnosis didn't make living with mast cell disease any easier. 

In 2012, Brynn was admitted to the hospital 30 times. She started having seizures and episodes of dystonia -- painful, violent muscle contractions that are "scary to see and scary to experience." On multiple occasions, doctors have had to put casts on her legs to prevent her joints from bending in the wrong direction.

"I've seen doctors and nurses step back, kind of like 'What is this?'" Barry Duncan says. 

Every time she went to the ER, Brynn was given a large dose of steroids to calm the inflammation. She's now steroid dependent -- and likely will be for life. 

"We could be here for days, and you still would not understand all the inner workings of Brynn and all of her medical issues," Melissa Duncan says. "But I think the underlying one is the mast cell disease, which is a beast, and continues to become a bigger beast, day by day."

 Living in a bubble

Brynn spent her 19th birthday in the hospital. An allergic reaction made her miss a zip lining trip for her 20th. On December 31, her 21st birthday, when many young adults would be out celebrating the legal drinking age with friends, she was at home still recuperating from Christmas. She had joined the holiday festivities by eating a special pizza -- made with fake bread and fake cheese. 

"It's nasty," Barry Duncan says with a laugh. "It's the worst pizza you've ever tasted." But "for her, the worst pizza you've ever had ... tastes really good."

Brynn dreams about real stuffed crust pizza sometimes. And mozzarella sticks. Occasionally she lets her spunky attitude drop, and you see that she understands the effect her illness has on those around her. 

Her parents have spent weeks sleeping in cramped hospital chairs. Her younger siblings have missed vacations and school ceremonies; they've learned how to inject Brynn with an EpiPen, and how to hold her limbs still during a dystonia episode. 

"There's a lot of guilt that goes along with having a chronic illness," Brynn says. "You feel like a burden. And people can tell you you're not, but no matter what, in your head, you feel that you are."

She has moments when she gets jealous of her high school friends who are doing all the things she can't -- attending college, moving out, finding boyfriends. She and her new friends, others with chronic illnesses she met online, have a saying: "Single and ready to mingle -- as long as you have good health insurance."

And with a giggle, the dark moment passes. Skyping with her friends keeps her spirits up. She's prolific on Instagram, with more than 5,300 followers, and writes regularly on her blog, which is called "Brynn's Bubble." 

"A lot of people with this disease ... do, in a sense, have to live in a bubble, because it's really difficult to get the symptoms under control," Brynn says. "You spend a lot of time alone. And it can be very isolating. But thanks to social media, I haven't felt alone."

Over the last two years, Brynn and her family have made progress in managing her disease. She was one of the first patients in the nation to be put on a continuous IV of antihistamine. Intravenous immune globulin, or IVIG, therapy, when a healthy donor's plasma is used to boost a patient's immune system, cut in half the number of drugs she needs. 

Of course, she still needs a lot -- a compounding pharmacy delivers a box to her house once or twice a week. The meds make her brain foggy. She punctuates conversations with "Where'd that thought go?" But that doesn't stop her from talking. She plans to keep talking until mast cell disease receives the attention she feels it deserves. 

"'You don't look sick' -- that's one of the comments that I get a lot. Or they say, 'At least it's not cancer,' and that's another hard one, because these illnesses can be just as devastating," Brynn says. "The difference is they're not understood. And the only way to change that is to somehow bring awareness to it."

Early in her taekwondo career, Brynn's instructor told her that she could win a match before it even began -- just by staring down the opponent. She plans to fight mast cell disease the same way.

 


Topics: allergies, health, healthcare, medical, hospital, patient, treatment, mast cells, allergic, EpiPens, mast cell disease

You Might Be Allergic To Penicillin; Then Again, You Might Not

Posted by Erica Bettencourt

Mon, Nov 10, 2014 @ 02:54 PM

penicillin

Many people have been told, incorrectly, that they're allergic to penicillin, but have not had allergy testing. These people are often given alternative antibiotics prior to surgery to ward off infection. But when antibiotic choices are limited due to resistance, treatment alternatives may be more toxic, more expensive and less effective.

According to two studies presented at the American College of Allergy, Asthma and Immunology (ACAAI) Annual Scientific Meeting, people who believe they have a penicillin allergy would benefit from consultation from an allergist and penicillin allergy skin testing. Once they know if they are allergic, they can be given appropriate -- and not more resistant -- treatment prior to surgery. Of the 384 people in the first study who believed they were allergic to penicillin, 94 percent tested negative for penicillin allergy.

"A large number of people in our study who had a history of penicillin allergy were actually not allergic," said allergist and ACAAI member Thanai Pongdee, MD, lead study author. "They may have had an unfavorable response to penicillin at some point in the past, such as hives or swelling, but they did not demonstrate any evidence of penicillin allergy at the current time. With that in mind, their doctors prescribed different medications prior to surgery."

In the second study, 38 people who believed they were allergic to penicillin were given penicillin skin testing to see if it was possible to help reduce the use of high-cost antibiotics. Of the 38 people tested, all of them tested negative to an allergy for penicillin. Once it was known they weren't allergic to penicillin, the medical center was able to change the medications of 29 of the patients, thereby significantly lowering prescription costs.

"When you are told you have an allergy to something, it's important to be seen and tested by an allergist, who has the specialized training needed for accurate diagnosis and treatment," said allergist James Sublett, ACAAI president-elect. "If you're truly allergic to a medication, your allergist will counsel you on an appropriate substitute."

Source: www.sciencedaily.com

Topics: allergies, health, health care, medical, medicine, testing, Penicillin

3 Young Siblings Face Rare Disease That Makes Food Deadly

Posted by Erica Bettencourt

Wed, Sep 17, 2014 @ 01:09 PM

FriskFamily resized 600

For three young siblings, eating is a life or death proposition, thanks to a rare white blood cell disease, reported KSL.

The Frisk children— Jaxen, age 9; Tieler, age 7; Boston, age 4— have spent weeks in the hospital and are allergic to pets, pollens and multiple foods. The siblings all have eosinophilic gastrointestinal disorder (EGID), an abnormal build-up of eosinophil white blood cells in their GI tracts that can cause inflammation and tissue damage in response to foods and allergens. While the disease is relatively rare, it has increased in prevalence over the past decade affecting one in 2,000 people, according to the American Partnership for Eosinophilic Disorders.

"You need food to survive. But it is also what can kill you in our house," their mother, Jenny Frisk, told KSL.

When they’re exposed to their triggers, the children could have an anaphylactic reaction— potentially fatal allergic symptoms throughout the body.

"Tieler had one sip of milk when she was 1-year-old, and instantly started projectile vomiting and got hives all over her body," her father, Gary, told KSL. "It's a life and death situation at birthday parties, or religious events, or anywhere we go, because food is such a big part of our culture."

Between the three children, they’ve endured 11 surgeries and eight extended hospital stays, with more expected in the future.

On top of the children’s health issues, Gary battled cancer two years ago and Jenny had to have several surgeries due to serious adrenal insufficiencies that were unrelated to EGID.

The family has been bankrupted twice by medical bills. While they make too much income to qualify for help, they don’t make enough to pay for their children’s medical needs. Friends and family have started a GoFundMe account to raise money to pay for genetic testing and treatment.

"When we're looking at an illness that is not curable, and the treatment isn't covered (by insurance), the light at the end of the tunnel is really far away," Jenny said.

Source: http://www.foxnews.com

Topics: allergies, rare disease, health, healthcare, children, medical, food

Dirty Baby, Healthy Baby? Early Filth May Reduce Allergies

Posted by Erica Bettencourt

Mon, Jun 09, 2014 @ 01:06 PM

BY LINDA CARROLL

dirty babies (5)

Want a healthy baby? You may want to roll her around in dirt.

For decades, parents have shielded infants from bacteria and other possible triggers for illness, allergies and asthma.

But a surprising new study suggests that exposure to cat dander, a wide variety of household bacteria — and even rodent and roach allergens — may help protect infants against future allergies and wheezing.

Interestingly, contact with bacteria and dander after age 1 was not protective — it actually increased the risk.

“It was the opposite of what we expected,” said Dr. Robert Wood, chief of the division of allergy and immunology at the Johns Hopkins Children’s Center and co-author of the study in the Journal of Allergy and Clinical Immunology. “We’re not promoting bringing rodents and cockroaches into the home, but this data does suggest that being too clean may not be good.”

 The new findings may help explain some contradictions in research on the so-called hygiene hypothesis, which suggested that kids growing up in a super clean environment were more likely to develop allergies.

“This doesn't completely resolve the controversy, but it does add a big piece of the puzzle,” said Dr. Jonathan Spergel, a professor of pediatrics and chief of allergy at the Children’s Hospital of Philadelphia.

The hygiene hypothesis was developed after researchers noticed that farm kids were less likely to have allergies. Dirty environments, experts suggested, might be protective. The hypothesis seemed to explain why developed countries had skyrocketing rates of allergies and asthma.

“We’re not promoting bringing rodents and cockroaches into the home, but this data does suggest that being too clean may not be good.”

The theory “is that as we clean up our environment, our immune system moves away from being geared toward fighting bacteria and parasites,” said Dr. Maria Garcia Lloret, an assistant clinical professor of pediatric allergy and immunology at the Mattel Children’s Hospital at the University of California, Los Angeles. “It then has nothing to do and starts to react against things that are normally not harmful, like dust mites, or cat dander or cockroaches or peanuts.”

A chink in the hygiene hypothesis seemed to be the high rates of allergy and asthma in inner-city environments. But the new study may help explain the contradictions by showing that early exposure is crucial.

“It’s all about being exposed to the right bacteria at the right time,” Spergel said.

Wood and his colleagues followed 467 newborns for three years, screening them for allergies annually and testing the dust in the houses where they lived for allergens and bacteria. To the researchers’ surprise, kids who were exposed before their first birthday to mouse and cat dander along with cockroach droppings had lower rates of allergies and wheezing by age 3, compared to those who were not exposed so early on.

 In fact, wheezing was three times as common among children who had less exposure to those allergens early in life.

The protective effect of early exposure to allergens was amplified if the home also contained a wide variety of bacteria.

The reason may be that “a lot of immune system development that may lead someone down the path to allergies and asthma may be set down early in life,” Wood said.

Researchers aren’t ready to try to translate the new findings into practical advice for parents. But, Lloret said, we now know that “strict avoidance of allergens from the beginning does not protect you, and early exposure in the right context may make the difference between disease and tolerance. You could say that this is the downside of cleanliness.”

The new findings may upend advice experts have been giving to parents on the topic of pets and newborns.

“Twenty years ago we used to tell parents to get the cats and dogs out of the house,” Wood said. “This shows that the younger the child is when you get a pet, the better.”

Source: nbcnews.com

Topics: allergies, health, babies, clean, dirt

For school nurses, it’s far beyond Band-Aids

Posted by Alycia Sullivan

Fri, May 17, 2013 @ 01:19 PM

describe the imageThe peak times for student visits to Ronda Kissling’s office are at the start of the school day and around lunch and recess time, but Kissling doesn’t get much downtime.

Kissling is the nurse serving three elementary schools: Croninger, St. Joseph Central and Shambaugh. She began her day Friday at Croninger to see

schoolnurse

 the students who got off the busdescribe the image not feeling well. By late morning, she was headed to Shambaugh to give insulin to thehandful of diabetic students there. Shortly after noon she returned to Croninger to give students insulin and just in time to catch any students injured during recess.

Between student visits and charting throughout the day, Kissling checked on an uninsured student who had broken his arm; urged a doctor’s visit for a student with a particularly suspicious-looking rash; and worked on a letter to send home to parents about immunization changes for next school year.

She said most people don’t realize what school nursing is all about.

“They think we sit around all day and just give out ice packs and Band-Aids,” she said. “There’s so much more to it nowadays.”

Increase in ailments

Much has changed in school nursing in the past 10 to 15 years, said Chris Amidon, a registered nurse serving Crawfordsville Community School Corp. and president of the Indiana Association of School Nurses.

One area in particular is the increase in students’ mental health problems.

“A lot of us were not prepared to deal with that,” she said, because of nurses’ inexperience in psychiatry.

She estimates about 32 percent of school nurses’ time is devoted to providing mental health services, whether they realize it or not. Often mental health problems can show up as physical ailments like head or stomach aches, she said.

According to a 2011-12 survey by the Centers for Disease Control and Prevention, about 165,000 Hoosier children have emotional, developmental or behavioral problems that require treatment or counseling, and 41 percent of those children do not receive mental health services.

Children born prematurely or with other challenges now live and attend school.

“There’re so many children with time-consuming needs,” Amidon said, such as tube feedings or students who need help using the restroom. Thirty years ago, she said, these children probably wouldn’t have even attended school.

Rates of overweight and obese children as well as the number of children with food allergies are also increasing.

Mary Hess, head nurse for Fort Wayne Community Schools, said more than 13,000 students in the district report having allergies. That includes food allergies, such as to peanuts, and being allergic to bee stings and latex.

About 760 of those students report severe or anaphylactic symptoms if exposed to a certain allergen, she said.

“There’s been a huge increase in allergies from when I started 15, 16 years ago,” Hess said.

Hess reports allergies and diabetes among the top four reported chronic illness of students in FWCS, now the largest district in the state with about 30,600 students. Asthma and seizure disorders also top the list.

“We see an increase every school year with students reporting some chronic health condition,” Hess said.

According to the National Association of School Nurses, the incidence of obesity in the past 30 years has doubled for 2- to 5-year-olds; tripled among 6- to 11-year-olds; and more than tripled for 12- to 19-year-olds. In Indiana, 32 percent of children ages 10 to 17 are overweight or obese, according to the CDC survey.

A disease such as diabetes requires extra effort to manage as treatments have advanced. Diabetic children used to get insulin in the morning, and their blood sugar levels were simply monitored during the day.

“There was not the constant fine-tuning we see in today’s plans,” she said.

Many children require insulin when they eat, which could be twice a day if the child eats breakfast at school.

FWCS to hire nurses

Students’ insulin needs are what led the Crawfordsville schools to make it a priority to provide funding for a full-time nurse in each of its school buildings, instead of its old policy of staffing based on just a few students in certain buildings.

“We used to do that, but it got to the point where there’s at least one child in each building with diabetes or even food allergies,” she said.

Unlike Crawfordsville, not every school in Fort Wayne Community Schools is staffed with a full-time nurse. This year, about 24 nurses split their time among the district’s 51 school buildings. Some nurses, like Kissling, are responsible for three schools, Hess said.

“My nurses have been stretched very thin,” she said.

Northrop High School is one of the district’s busiest schools with more than 2,000 students. The school’s full-time nurse fields 650 to 850 student visits a month.

“Their traffic flow is extremely busy, but I wouldn’t say that’s particularly new,” Hess said. “I’ve felt for some time we’ve needed more nurses.”

FWCS plans to hire additional nurses for next year, bringing the total number of nurses to 30 with no nurses serving more than two buildings.

Ten years ago, Southwest Allen County Schools employed clinical aides, or someone who has medical training but isn’t licensed, in some of its schools instead of a registered nurse.

Amidon said many districts have moved away from using clinical aides, although some districts like Huntington Community School Corp. still use them or other unlicensed staff instead of registered nurses. And in FWCS if a nurse isn’t available, secretaries and other staff receive special training like CPR and medication dispensing.

Southwest Allen changed its policy when it became clear that student health was becoming more challenging and “too medically intense,” said Phyllis Davis, director of human resources in the district.

“In many schools we have children with severe disabilities and who are very unique, medically,” she said.

Southwest Allen employs 11 nurses, with at least one nurse working full time at each school. Others float among schools to give the full-time nurse assistance.

“I can assure you, they’re very busy,” Davis said.

Manic Mondays

A student sat on the cot in Kissling’s small clinic Friday waiting patiently for her to finish her phone call with a parent. He had come in because his eyes were red and itchy. After some questions, Kissling determined it wasn’t pink eye, a highly contagious infection, but that the student’s symptoms were caused by his allergies.

“It’s that time of year,” she said.

She offered him a cold cloth for his eyes and sent him on his way. He was the second student within an hour to complain about allergy-related symptoms.

Amidon said research shows that if students see a school nurse, they are more likely to have their problems addressed and to stay at school. Someone unlicensed who is providing care is more likely to send a student home.

School nurses are an important component in helping students achieve academically, Davis said.

“Our nursing staff is an important part of our school district’s success for our students,” she said.

They’re also an important part of children’s health care. Amidon said for many students who don’t have health insurance, school nurses are primary health care providers. She said Mondays are often busy times with students who’ve been sick all weekend, and their parents send them to the nurse to determine how serious the sickness is.

According to the CDC survey, nearly 12 percent of Hoosier children lacked consistent health care coverage last year.

For all they do, school nurses receive their own special day a year. Wednesday is National School Nurse Day, set aside to celebrate the more than 74,000 school nurses across the country.

“It is a very, very rewarding kind of nursing,” Amidon said.

Source: The Journal Gazette 

Topics: school nurse, full-time, mental health, diabetic, allergies, health coverage

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