Everyone is well aware that we are in the thick of flu season. Recently, PPMD board member, and Duchenne parent, Ellen Wagner, got first-hand experience dealing with the scariness of the enterovirus and rhinovirus when her son Tim fell ill. I asked Ellen to share what her experience was like so that we could learn important lessons in case others in the community deal with a similar illness.

Following Ellen and Tim’s story, I have added some helpful information and reviewed some tips to avoid the flu in your household.

Tim and Ellen’s Story 

My name is Ellen Wagner and my son Tim is 16 with Duchenne muscular dystrophy. He is non-ambulatory and almost never sick - until last week.

 

Tim came home from school on a Tuesday with a slight cough and not feeling well. Wednesday I took him to the pediatrician just to be cautious. His lungs were clear and the doctor was not concerned but prescribed an antibiotic just to stay ahead of any potential lung infections. Thursday was uneventful. Friday early morning Tim was very uncomfortable and starting to sound wheezy. We were using the cough machine every half hour or so. He finally fell asleep around dawn. When he awoke a few hours later he seemed much better. Oxygen was around 94, 95 and his heart rate was around 110. Not alarming.

 

About two hours later Tim started to struggle. We were using the cough machine constantly and he was still choking on secretions. His oxygen was in the 80's and his heart rate was climbing. His heart rate was in the 150's to 160's when I called 911. Calling 911 is a very scary decision to make. Tim was transported to the local ER. We brought our cough machine with us.

 

In the ER the doctor called almost immediately for transport to the children’s hospital. I continued using our cough machine as needed. The ER staff started an IV, obtained a chest X-ray and EKG, and gave Tim a breathing treatment. The chest X-Ray showed Tim's right lung had collapsed (atelectasis); Tim was given fluid through an IV along with an antibiotic.

 

Once we arrived at Lurie Children's Hospital, the diagnostic work continued. Tim was admitted to the PICU (pediatric intensive care unit). A viral panel was ordered and another chest X-ray and EKG. I continued using the cough machine to help Tim breath. He was diagnosed with enterovirus and rhinovirus and pneumonia.

 

Breathing treatments every 4 hours using Albuteral and a saline solution helped the symptoms. We used the cough assist machine in between to clear the secretions loosened by the breathing treatments. Once Tim's vital signs started to improve, I asked to stop the Albuteral. Tim remained in the PICU for five days.

 

Some of the areas of frustration included missing reports and poor communication among specialists/institutions. The EKG showed new areas of damage and the ICU intensivists were concerned about heart damage. Unfortunately the reports from Tim's multi-disciplinary institution visits did not include copies of their EKG for comparison. Also there were communication gaps between Tim's doctors and the intensivists taking care of him.

 

With a diagnosis of Duchenne muscular dystrophy, it was important to be sure that everyone involved in Tim’s care was aware of his health history. Thankfully Tim has completely recovered from the ordeal. It will probably take his father and I a little longer to recover.

Enterovirus (EV-D68)

First, if you have not had your flu shot, stop reading this and immediately go get it! (For more information about the 2014 flu vaccine, go here)

 

Now that everyone has had their flu shot, lets talk about enterovirus (EV-D68). While not wanting to cause alarm, for some, this is a nasty, nasty virus.

 

While there are many enteroviruses and rhinoviruses that cause millions of respiratory illnesses each year, EV-D68 has been the most common enterovirus detected this year. According to the CDC, there have been 691 confirmed cases in 46 states in the US between August and October. These numbers should begin to decline by late fall.

 

Symptoms

The symptoms of EV-D68 start out mild - fever, runny nose, body and muscle aches. However, some people have gone on to develop respiratory symptoms. The respiratory symptoms, in some cases, have developed very quickly – some, within just a few hours. These respiratory symptoms have includes wheezing and respiratory distress. Signs of respiratory distress may include: breathing very fast, low oxygen levels (a pulse ox below 95 is too low), retracting respiratory muscles (muscles between the ribs and/or above the breast bone going “in” when taking a breath), “nasal flaring” (when the nostrils open very widely when taking a breath), “breath hunger” (gasping for air), “grunting” (when breathing out), wheezing (especially when breathing in) and changes in alertness (very tired or just “out of it”). Patients who have asthma and other respiratory dysfunctions have been at the greatest risk.

 

A very, very small number of patients under the age of 21yo (45 in the US) have developed symptoms of paralysis following infection with enterovirus. The paralysis occurs 10-14 days after flu symptoms have resolved. If your child develops a low grade fever with complaints of body aches 10-14 days after the flu has run its course, followed by quickly developing paralysis of 1 or more limbs, seek immediate attention. This virus is more likely to be picked up by a nasal or oral swab, so be sure this is part of the work up. Again, this is an extremely rare occurrence.

 

Enterovirus is typically a pediatric illness, so adult healthcare providers may not be as in tune with symptoms of this illness. If your young adult or adult son begins exhibiting concerning symptoms, mentioning the possibility of enterovirus to your healthcare team may help to speed diagnosis and treatment.

 

Prevention

Protecting yourself and your family from enterovirus is much the same as protecting them from other viruses:

  • Wash your hands often with soap and water for 20 seconds
  • Avoid touching your eyes, nose and mouth with unwashed hands
  • Avoid close contact (hugging, kissing, sharing cups or eating utensils) with those who are sick
  • Cover your coughs and sneezes with your arm, elbow or tissue (not your hands)
  • If you are sick, stay home!

 

Upper Respiratory Congestion

I did a blog with Dan Sheehan, Pulmonologist from the University of Buffalo, in 2013. Here are a few excerpts from that blog:

 

Cough Assist

If you cannot effectively cough the mucus from your lungs on your own, you may need help from a “cough assist machine.” Some important notes:

  • You should begin using a cough assist machine when your cough peak flow (a measurement of how hard you can cough) is <270 Lpm (1). 
  • If you are able to walk and have a strong cough when you are well, then you are less likely to need a cough assist unless you are ill.
  • If you are no longer able to walk on your own, you should use the cough assist machine daily to keep your lungs clear, chest muscles flexible, and use it more frequently during a respiratory illness/cold

If You Do Have to Go to the Emergency Room

If you do need to go to the Emergency Room, the providers there will need as much information about you and Duchenne as possible, so that they will know what medications and procedures will be safe and helpful.

  • Wearing a medical alert bracelet (or tag of some kind) will help first responders know what they should and should not do to help you. Dr. Sheehan’s group and PPMD have also developed a short, one page history (download) that you should complete and take with you.
  • You also should take your Cough Assist and BIPAP with you if you already have them.
  • Take copies of any tests/procedures (EKG, echo/MRI, PFT’s, etc.) that have been done in the recent past for comparison
  • Let your Neurologist, Pulmonologist, Respiratory Therapist, and/or Cardiologist know you are going to/in the emergency room. Please ask your emergency department physician to page your specialist (pulmonologist, cardiologist, neurologist) when you arrive.

 

Oxygen

If you would like more information on the dangers of oxygen, our blog with Dr. Jonathan Finder (Pulmonology, Children's Hospital of Pittsburgh) explains why giving oxygen without careful monitoring can be dangerous, and even fatal, for patients with Duchenne. Key information regarding the use of oxygen can also be found on the PPMD Emergency Card, which can be found on the PPMD website and mobile app. You should always keep a copy of this card with you and with your child’s emergency information.

 

Summary

  • Be sure that everyone in your family has been protected against the flu
  • Take the same steps to prevent EV-D68 that you would take to prevent other viruses (see above)
  • If you or your child has viral symptoms (fever, aches, runny nose), be alert for signs of respiratory distress (see above)
  • If you or your child develops respiratory distress, go to the emergency room
  • If your child (<21yo) rapidly develops paralysis of 1 or more limbs, 10-14 days after the flu has run its course, go to the emergency room
  • Take your/your child’s medications/equipment (cough assist, BiPAP, etc.) with you!

 

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