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Jakob’s Journey at Renown Children’s Hospital
In August 2016, six-year-old Jakob was admitted to Renown Children's Hospital with what seemed like a common ear infection. Jakob's condition quickly progressed, and he started experiencing neurological symptoms such as difficulty speaking and a full-body shutdown. Doctors, neurologists and specialists from Renown worked with doctors from Stanford, where he was ultimately diagnosed with Bickerstaff brainstem encephalitis (BBE). BBE is a rare, autoimmune response that attacks the nerves in the body due to an acute illness such as a cold, flu or, in Jakob's case, an ear infection. Jakob could not breathe or eat and experienced paralysis on the side of his face, throat, stomach, bowels, lungs and legs. In addition, he started to rapidly lose weight as well as body function. Jakob lost half his body weight which resulted in the need for a Gastrostomy tube. This device is placed surgically and gives direct access to the stomach to give the child the nutrition needed. He also needed occupational therapy, and after three and a half months of ICU respiratory therapy, surgeries and treatments, he was released home to regain his strength. Forever Grateful Anica, Jakob's mom, said, "If it were not for the quick response and unconditional support and compassion from the team at Renown, Jakob would not be here today." Jakob's family is forever grateful to the staff, community and expertise at Renown for their unwavering commitment to their son and family during their most trying time in life. "When I met Jakob on the first day of his illness, so much was unknown. My team and I were worried, as his symptoms were very unusual. His rapid deterioration, after being a perfectly healthy child, was clearly terrifying for his parents. Handing over a child's care to a team of strangers is one of the scariest things that can happen to parents,” said Dr. Kris Deeter, Physician in Chief at Renown Children’s Hospital. “However, Anica and Jeremiah were also very clear that they did not want Jakob transferred somewhere else. So, we used all our resources to care for him, arrive at a diagnosis, and start aggressive therapies. They listened to every word we said, educated themselves, and became partners in Jakob's care. We all became part of Team Jakob, and soon, he proved to us just how strong he was." Today, Jakob is 13 years old and thriving in every aspect of his life. He is currently on the honor roll in school and finds joy in his newfound passion for the violin. He loves spending his free time learning about mixing music, making new friends and traveling to different parts of the country. This summer, he will travel to Europe to explore his passion for culture. The family says, "We owe it all to the family and staff at Renown."
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More Than a Cold
Respiratory syncytial virus, also known as RSV, is a common respiratory virus that impacts the lungs and breathing pathways. The virus can be dangerous for infants and young children and is also concerning for older adults. While most older kids and adults only experience cold-like systems and recover in a week or two, an estimated 58,000-80,000 children younger than 5 years old are hospitalized due to RSV each year, and in 2022 healthcare organizations across the country are experiencing higher infection rates than in years past. "RSV typically peaks in the winter, but this season we are seeing an earlier surge in cases,” said Dr. Vanessa Slots, the Division Chief of General Pediatrics at Renown. “Infants who are infected with RSV almost always show symptoms. Call your healthcare provider immediately if your child is having difficulty breathing, is not drinking enough fluids or is experiencing worsening symptoms.” Symptoms of RSV: Runny nose Decrease in appetite/inability to drink Dry diapers, an indication of dehydration Cough, which may progress to wheezing or difficulty breathing Irritability (most common in very young infants) Decreased activity (most common in very young infants) Decreased appetite (most common in very young infants) Apnea, pauses in breathing for more than 10 seconds (most common in very young infants) What to do if you think your child has RSV: Call your pediatrician! If you suspect your child might have RSV, consulting their healthcare provider is the best first line of defense. From here they will help you build an appropriate treatment plan for child. Keep in mind that many pediatrician offices offer 24/7 call lines. If your child is experiencing retracted breathing (when the area between the ribs and in the neck sinks in when a person attempts to inhale), dehydration (not drinking and decrease in wet diapers) or apnea (pauses in breathing for more than 10 seconds) please call 911 or go to the closest emergency room. Treating RSV from home: Clear your child's nasal pathway with a bulb syringe or saline spray/drops Stay home and rest Drink plenty of fluids to prevent dehydration Manage fever with fever reducers such as acetaminophen or ibuprofen Preventing the spread of RSV: Good news! The biggest RSV prevention tips are almost identical to what we’ve already been doing to prevent COVID-19 – so hopefully, these actions are already second nature. If you have young children or regularly encounter younger children, remember to: Wash your hands often Keep your hands off your face Avoid close contact with sick people Cover your coughs and sneezes Clean and disinfect surfaces Stay home when you are sick Get vaccinated against the flu and COVID-19 to prevent more serious co-infections RSV is dangerous for older adults, Too Older adults – especially those over 65 years old, have chronic heart or lung disease or a weakened immune system – also need to be hyper-vigilant about RSV. If you or your loved one is in the older adult at-risk group, remember to follow the above prevention measures and talk to your healthcare provider immediately if you suspect you have RSV. *Data courtesy of the Center for Disease Control and Prevention.
