Raising RSV Awareness

Riley and I had the pleasure of being interviewed yesterday by Stacey Deffenbaugh!  Stacey anchors NBC-2 News at Noon and The Healthcast report at 5:30pm.  She also contributes court stories from state and federal court.

We discussed raising awareness of Respiratory syncytial (sin-SISH-uhl) virus, or RSV.

Ms. Deffenbaugh and her cameraman, John, were a pleasure to have in our home and share Riley's story as well as his cause of protecting vulnerable children against respiratory illness.  Fortunately, Ms. Deffenbaugh was incredibly patient with my random thought pattern and our slightly chaotic lifestyle.  This experience certainly shows me that I need to polish my speaking skills and reign in my focus.  I suspect however that she will have no problem working around us as she prepares to get the word out.

RSV

 

www.rsvprotection.com

Respiratory syncytial virus (RSV) infection, is a common, easily spread virus that almost all children catch at least once by the time they turn 2.

RSV disease usually causes moderate-to-severe cold symptoms.  However, for some babies, complications from RSV disease can lead to serious lung infection.

Babies at most risk for developing severe RSV disease are premature babies - those born before 36 weeks gestation.

Premature babies have underdeveloped lungs and fewer of the vital antibodies needed to stave off infections, so they are not so well-equipped to fight RSV as full-term babies.  Other risk factors for RSV include: low-birth weight (under 5.5 pounds), certain lung and heart diseases, and situational risk factors such as attending day care, having preschool or school-age siblings, or exposure to tobacco smoke.

It is recommended that you call your baby's doctor if your baby has any of these problems:

Coughing or wheezing that doesn't stop

Fast wheezing or gasping for breath

Spread out nostrils and/or caved in chest when trying to breathe

A bluish color around the mouth or fingernails

A fever (in infants under 3 months of age, a fever greater than 100.4 degrees rectal)

Prevention

• Cover coughs and sneezes
• Wash hands frequently and correctly with soap and water for 15–20 seconds
• Avoid sharing their cups with others
• Refrain from kissing others 

Parents urged to watch for common virus - cape-coral-daily-breeze.com | News, sports, community info. - Cape Coral Daily Breeze

Parents urged to watch for common virus - cape-coral-daily-breeze.com | News, sports, community info. - Cape Coral Daily Breeze

‘RSV’ can severely sicken young kids

August 27, 2011

By MEGHAN McCOY (mmccoy@breezenewspapers.com) , Cape Coral Daily Breeze

We interviewed yesterday with the lovely Ms. McCoy to help spread awareness of Respiratory Syncytial Virus.

Although babies who are born before 36 weeks are at high risk of catching the respiratory syncytial virus, young children up to the age of four are also at risk.
Every year RSV affects between 4 million and 5 million children who are younger than 4 years old. In addition, more than 125,000 children are hospitalized every year from RSV.
Pediatrician with Lee Physician Group Tom Schiller, MD, said that RSV is a very common virus that has been around forever. Although the virus affects people of all ages, it can make young children extremely sick, he said.
The symptoms for RSV usually include a nasty head or chest cold, fever, runny nose, cough and wheezing, which are much like cold symptoms. Worst case scenario, RSV can cause lung disease, heart disease and cause a baby to stop breathing.
"It is a nasty little virus," Schiller said.
If a child is cranky, pulling at their ears or running a significant fever, Schiller said they need to be seen by a doctor.
Once the virus affects the child, it can occur over and over again.
"First time you get it is usually the worst," he said.
Schiller said after a child attracts the virus, they may wheeze with their next cold without it actually being RSV.
"It could happen for a couple of months," he said.
The symptoms can peak in small children between the ages of 2 to 8 months old. It can especially affect premature babies.
When the virus affects really small children, it goes down deep into their windpipes and causes inflammation and destruction, causing them to wheeze, Schiller said.
"Half of the kids that get RSV are later diagnosed with asthma," he said, adding that it can happen at any point.
RSV, he added, is the leading cause of lower respiratory tract infection in infants and young children.
The virus usually comes in outbreaks during the winter months, according to Schiller.
Although a sample can be taken from a young child's nose to run tests to see if he or she has the RSV virus, Schiller said they generally cannot act on the diagnosis.
A preventive medicine - synagis - can be given to the child to increase their immune system to help protect them against RSV. Schiller said the medicine is very expensive because it is a monthly inter muscular injection. Although it is expensive, it is cheaper than having a child go into the hospital, he said.
Schiller said the last vaccine that was created for RSV was in the 60s, but was later banned because it killed people, rather than helped them. He said research is still being done to create another vaccine to help with the virus.
With 80 percent of children in day care settings, the virus is easily spread through the simple touch of a hand.
"Hand hygiene is really the only tool you have to prevent it," he said about the virus.
RSV became a strong concern for Stacie Wiesenbaugh and her husband John Buck when their son was born early and was faced with many complications.
Wiesenbaugh had a very healthy pregnancy until she entered her 32nd week and had to have an emergency Caesarean section on Aug. 28, 2002 because her son Riley had suffered an in utero grade four massive brain hemorrhage.
Riley was born four pounds, six ounces.
"He had many complications due to the hemorrhage," Wiesenbaugh said. "We actually didn't think he was going to survive the first night."
A few days after Riley was born, he had to undergo surgery so a reservoir, a piece of hardware, could be placed into his skull so the doctor could remove the excess blood from occuring.
"The hemorrhage wouldn't stop," Wiesenbaugh said, which could have been deadly because when blood is not contained, it can cause extra pressure.
Due to Riley's size the problem continued, which involved another surgery to place another piece of hardware into his brain. The VP shunt, Wiesenbaugh said, was designed to allow the body to take care of the access fluid by itself.
Riley was released from the hospital two months after he was born, which was close to his actual due date.
Because of his condition, the family had to take every precaution they could to keep him healthy, which led to discussions of RSV.
She said they had to protect his compromised lungs, which were already receiving help from a respirator.
"He was high risk for picking up this virus," Wiesenbaugh said. "This kind of infection would land him back in the hospital easily and be life-threatening as well."
The hospital in Los Angeles told the family about the synagis injections to help prevent the possibility of Riley attracting RSV.
Once a month for two years Riley received the injection, which kept him safe from catching the virus.
"It was worth it because we didn't want to end up in the hospital," she said.
Although Riley will be 9 years old on Sunday, the family still practices prevention measures to keep the virus away. She said they kept him home when he was in a compromised state and did not allow people to approach and touch him. In addition, when they were at home, they were not shy about asking people to wash their hands before holding or touching Riley.
"Even though he is beyond the age of 2, we still are very careful," Wiesenbaugh said.
When she can educate others about the common virus she does by instructing them to wash their hands on a regular basis and sneeze and cough into the inside of their elbow so germs are not spread.
"It has been a long ride," she said. "This birth changed everything about our lives."
The parents were blessed with another son, Ronan, who is healthy and full of energy.
Wiesenbaugh said the progress Riley has made since he was born is amazing. He attends Rayma C. Page Elementary School as a fourth grader, where they began a special needs class for him, which has grown with other students since its inception.
"He comes home happy and they do everything they can for him," she said.
Due to many of his systems being compressed at an early age, Wiesenbaugh said Riley is nonverbal, developmental, visually and hearing impaired. He does not communicate through spoken word or sign language.
"The way that he will squeeze your hand will tell you if he is relaxed or stressed. Since he cannot walk or jump with joy, he will kick his legs rapidly in the wheelchair if he is excited," Buck said. "The pitch of his laugh can tell you if he is happy, scared or even in pain. If his sound (nonverbal) mimics yours in beat, pitch or tone he is in a communicative mood. In sum, it is his own language that we had to learn and we mutually learn given his impairments."

RSV, Not just a danger to preemies

Bonita Springs family still on guard to protect their son, now 5

By JOHN OSBORNE

Sunday, November 25, 2007

Stacie Wiesenbaugh thought she was just having a bad day on Aug. 27, 2002. Maybe a little cold, she thought. A touch of the flu, perhaps.
Barely eight-months pregnant with her first child, there was no way she could be in labor already. Not at 32 weeks.
Right?
Wrong.
Wiesenbaugh already had called in sick that morning to her job at the Library Foundation of Los Angeles. When several hours passed and she still wasn’t feeling better, several frantic calls to her doctor followed.
“Something’s not right,” Wiesenbaugh said. “Something is definitely wrong here.”
The doctor told her to get to a hospital right away.
*****
Wiesenbaugh’s child was born prematurely and placed under emergency care.
The boy, named Riley, came through it. And now he’s 5 years old.
But his infant and toddler years have presented one challenge after another for the young family.
Even so, with all that has gone wrong with Riley, one problem the family managed to avoid was having him contract RSV. But it’s been costly for them to provide Riley the preventative treatments.
Respiratory Syncytial Virus accounts for more than 125,000 hospitalizations each year, and is the leading cause of infant hospitalization in the U.S.
Though the condition can be deadly, it is preventable if the symptoms are caught in time.
Problem is, parents can easily confuse the symptoms of RSV with those of a common cold.
*****
On that day in Los Angeles in 2002 when Wiesenbaugh was trying to get to the hospital, nothing would be easy.
Her husband, John Buck, was stuck at work, and it would take him more than an hour to fight his way through the congested L.A. traffic to get to her.
In the end, she wound up calling a cab.
“And then, to make matters worse, the cab driver couldn’t find the place and barely spoke any English,” said the Bonita Springs mother of two. “I couldn’t believe it was happening.”
When the communication barrier was finally hurdled, off to the hospital they went: Wiesenbaugh and her confused cab driver. Time to fight the L.A. traffic once more.
Although it’s of little comfort now, Wiesenbaugh had enjoyed a remarkably healthy pregnancy up to that point.
She ate right, exercised dutifully and stayed away from all the things she was supposed to stay away from.
No booze, no cigarettes, no anything that could negatively affect her unborn baby.
So her first inkling that something might be wrong came during the emergency C-section at UCLA-Santa Monica.
“The operating room filled up so quickly it was amazing,” Wiesenbaugh said. “They listened to his heartbeat and it was obvious that he was in huge distress. The (medical) team rushed in and took him. I didn’t even get to see him and I didn’t know what was wrong. It was just devastating.”
When they finally wheeled her in to see her newborn baby several hours later, premature little Riley was much smaller than most babies. Just four pounds, eight ounces.
And he didn’t look right.
“Preemies are very distinct looking,” Wiesenbaugh said. “There’s no baby fat on them at all. Riley didn’t look like an infant at all – he looked old.”
But that wasn’t all of it. Not by a long shot.
*****
Riley had suffered a massive brain hemorrhage.
To make matters worse, his kidneys weren’t working properly, and at one point, Wiesenbaugh and her husband were faced with the unenviable task of signing a DNR _ Do Not Resuscitate _ order.
But Riley made it through.
Today at age 5, Riley is a special-needs child.
He is largely non-verbal, hard of hearing and has only limited peripheral vision. Because of the nature of the injuries to his brain, he has an extremely difficult time processing the world around him. There’s a shunt in his head to transfer excess cerebral spinal fluid to his abdomen.
Riley’s mother and father moved their young family to Florida about a year and a half after he was born, seeking whatever emotional comfort they could from family and friends.
Now, Wiesenbaugh wants to offer comfort to other young mothers.
*****
Despite Riley’s medical troubles, his family has managed to keep him, while at risk for RSV, from contracting it.
“It’s a very common virus that we all have the potential to get, but usually we just get a cold,” said Dr. Michael Light, a professor of clinical pediatrics at the University of Miami. “The problem is that babies have the potential to develop bronchiolitis from it.”
Light said all babies contract RSV at one point or another – it’s not a condition unique to preemies, like Riley, as is commonly thought.
“The majority of the time, it stays in the nose, not the lungs,” he said. “It’s when it gets to the lungs that there’s a problem.”
RSV season stretches from November to March in most parts of the country, but Florida has a season that lasts year-round, generally kicking into high-gear around August, Light said.
“It’s the peak of the season now, but because of the humidity here, it lasts all year,” he said.
RSV is generally transmitted by hand, Light said.
“When somebody touches a surface with RSV on it, and then touches a baby, it goes in through the eyes or nose,” he said. “The most useful prevention is simple hand-washing.”
But there’s also something of a wonder drug out there, Light added.
It’s called Synagis, and it’s administered at the first signs of RSV.
Unfortunately, it’s also expensive – about $1,000 for each monthly injection.
*****
To keep him as well as possible, Riley received Synagis injections for six months, and Wiesenbaugh had to pay the $6,000 fee up front with her credit card, only $3,000 of which she eventually got back from insurance coverage.
“Not only that, but for some reason they didn’t have Synagis in Los Angeles, so I had to call a pharmacy in Washington, D.C., have them ship it to a pharmacy in California, and then have them ship it to my doctor,” she said.
Wonder drugs aside, prevention is the key to avoiding RSV, Wiesenbaugh said.
“If you have an at-risk child, be careful of the contact the child has with family and caregivers,” she said. “If anyone’s around your child, be sure to have them wash their hands. Keep away from crowded places like malls and play centers and from other kids with cold symptoms.
“And don’t have any qualms about telling people who want to touch your beautiful young child, ‘Hey, you can look, but please don’t touch.’”
Sadly, that isn’t much of a problem when it comes to Riley, Wiesenbaugh said.
“A lot of people won’t even look at us – they’ll look right through us,” she said. “They don’t want to identify with the fact that this could happen to their own child, and I don’t blame them for that. I certainly didn’t want it to happen to my son.”
A few years after Riley’s birth, Wiesenbaugh and her husband welcomed another child into the world – a healthy baby boy named Ronan who will turn 3 in December.
“He’s healthy and he’s energetic,” Wiesenbaugh said with a laugh. “Boy, is he energetic!”
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For more information on how to prevent RSV, visit www.RSVprotection.com.

Photo by MICHEL FORTIER, Daily News

Born prematurely, Riley Bush, 5, suffered a number of complications and according to his doctor, was considered high risk for the breathing disorder RSV. As a precaution, his mother, Stacie Wiesenbaugh made sure he had preventative RSV shot called Synagis despite inconsistencies with her insurance company which sometimes caused major problems.

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Contact John Osborne at johnaosborne@hotmail.com

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