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
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