RESPIRATORY ILLNESS - A MOTHER'S STORY

Michael Walker is now four years old. When Michael was born in 1992 he could not even swallow his own secretions. At night he needed to lie on his stomach so his secretions would drain out of his mouth. Whenever he had a cold (which was almost constant) he had to lie in a semi-supine (lying 45 degrees on his back with his face upward) position to help his breathing. At times he required suctioning by mouth every three to five minutes. This position can be achieved by inserting phone books in the child’s mattress or sitting the child on a therapeutic chair called a Tumble Forms Seater. This seat can be ordered with a letter of medical necessity through a provider of therapeutic medical equipment. Usually this letter is obtained through a neurologist.

The neurologist must state that it is medically necessary because the child cannot swallow secretions and needs to be elevated to help prevent aspiration of secretions, thus causing respiratory distress or even death. The reason for stating it in this manner is that medical insurance companies need to know the seat is for medical purposes and not intended for therapeutic purposes. It will be an instrumental part of the lives of our children, so the importance of proper positioning cannot be overstated.

As an infant Michael was given Robinual liquid at a dosage of 2 milligrams. Robinul generic name is glycoplyrrolate. Robinul was used to control oral secretions and also relaxes nerves in the stomach and reduces stomach acids. He was on this medication until about 8 months of age when he began to swallow on his own.

He also requires myringotomy tubes about every six months to one year. Myringotomy is an incision of the eardrum to create an artificial opening which relieves pressure and allows drainage of fluid from an inflamed middle ear, known as otis media. Otis media, in Michael’s case, is also treated with Corisporin Otic Solution in the ear. In my opinion, I recommend the brand name drug. There is a slight chemical difference in each drug. Myringotomy tubes are placed by an otorhinolaryngologist, a specialist in ears, nose and throat (ENT).

Michael at two months was released from the hospital with a suction machine. Every Moebius child with swallowing or breathing difficulty should obtain a suction machine - it will save you extra emergency hospital visits. We prefer the DeVilbiss VacuAide Portable Aspirator, model number 7304A. I strongly recommend this model type. It comes with an AC adapter and an internal rechargeable battery pack. The rechargeable battery is very important when there is no electricity. It also helps a child or adult be independent, not having to worry about an electric outlet.

We did not realize the importance of a pediatric pulmonary doctor until Michael became afflicted with respiratory syncytial virus (RSV). RSV, a myxovirus, is a group of RNA containing the viruses that include those causing influenza in animals and humans. The related paramyxoviruses include the respiratory syncytial virus (RSV) and the agents which cause measles, mumps and parainfluenza. RSV causes infections of the nose and throat. It is a major cause of bronchiolitis and pneumonia in young children. In tissue cultures infected with the virus, cells merge together to form a conglomerate (syncytium).

RSV is a dangerous virus which should be treated in a hospital setting because children have small airways and can go into bronchial spasms if the airway is full of secretions.

RSV is detected by a procedure called a nasal aspirator. This is done by withdrawing nasal fluid by means of suctioning. The specimen is taken to a lab for a culture. The physician should always give STAT orders to speed up the process. A blood test called a CHEM 29 would also be in order at this time to see how everything is working - also ordered in STAT form.

It is my observation that some children with Moebius have difficulty with drawing blood. If so, insist that the physician write an order for an IV nurse to draw the blood. This will save your child the pain and trauma of having a less experienced technician make many unsuccessful attempts before calling the IV nurse themselves. These are highly trained nurses who have experience with difficult blood extractions.

Another disease that might affect Moebius children is respiratory distress syndrome; this is usually treated with ribavirin inhalation therapy. This therapy is only done in a hospital setting. The respiratory therapist usually administers Ribavirin inhalation solution in a tent with oxygen. This procedure is performed at night. The medication can have serious side effects, so extreme caution should be exercised by attending personnel. Each hospital has protocol of a set time frame for this treatment. On the norm it is given for three days for 12 hours on and 12 hours off. When ribavirin is given at night it is less stressful on the person receiving the treatment. Some children with Moebius have what is called exasperated airway disease; it is an asthma type or bronchitis disease.

Another problem possibly associated with Moebius is respiratory distress syndrome (hyaline membrane disease). This is the condition of a newborn in which the lungs are improperly expanded. Initially inflation and normal expansion of the lungs requires the presence of a substance (surfactant) that reduces the surface tension of the air sacs (alveoli). The condition is the most common and serious among premature infants (especially between the 32 and 37 weeks of gestation), in whom surfactant is likely to be deficient. Breathing is rapid, labored, and shallow, and microscopic examinations of lung tissue in fatal cases has revealed the collapsed air sacs. The condition is treated by careful nursing. In my opinion the patient should be in the ICU where patients are given one on one care. (In ICU’s nurses have 2-3 patients.)

Usually when an individual has RSV or respiratory distress syndrome they are given albuterol sulfate aerosol inhalation treatment. We prefer to use Proventil which is manufactured by Schering, mixed with Blairex Sterile Broncho Saline manufactured by Blairex Laboratories, Inc. Columbus, IN 47202; 800-252-4739

Martha Walker