Symptom Management

Respiratory System

Common Respiratory Problems

Lung problems go hand-and-hand with the progressive feeding problems that develop in most children with neuro-degenerative diseases. As these children begin to have difficulty swallowing, their gagging and coughing can lead to “mini” or major aspirations (inhaling liquid into the lungs) and bronchospasm (spasm in the windpipe). These conditions can cause wheezing, which is a whistling sound made by air going through a narrowed passageway. In addition, these children often have a lot of mucus in their lungs resulting in congestion.

Two families mentioned medications which they used to help decrease the amount of secretions in the mouth. They are Scopolamine® patches (an antihistamine used for motion sickness) and Artane® (an antispasmodic). Ask your health care provider about these options. Both families felt that these medications helped a great deal.

“John has been like a new person since he went on Artane. The side effect of Artane is dryness of the mouth and it has controlled the drool and phlegm very effectively.”

Children with neuro-degenerative diseases commonly have a condition called reflux, which causes the stomach acids to be regurgitated up into the esophagus. Reflux is a common precipitator of respiratory problems and can also cause wheezing (see Feeding section).

These children may also develop asthma, a condition in which there is spasm of the airways, causing wheezing. In addition to the previously mentioned physiologic triggers (reflux, aspiration, etc.), asthma may also have environmental causes. Typical allergens such as dust, mold, cats, dogs, etc., can aggravate your child's asthma and may further complicate the picture.

Of course the main respiratory condition that is on all of our minds is pneumonia, which can be very serious in our children. Pneumonia is a lung infection in which sections of lung develop severe inflammation. Children with progressive neurological disorders are certainly at increased risk for developing pneumonia with any respiratory infection because of their relative lack of mobility: they often have poor cough reflexes and more shallow breathing patterns because of decreased activity levels. Swallowing difficulties also make them more susceptible to aspiration, which can cause pneumonia.

“With every cold or flu, with every fever, I ask myself, ‘Is this it?' It is on my mind until he is well again.”

Physical therapy of the chest (Chest P.T.), and frequent position changes(e.g. turning side to side in bed and alternating with time sitting in the chair) are beneficial in dealing with congestion. These measures loosen the chest secretions, thereby stimulating the cough reflex. Chest P.T. involves clapping and vibrating the hands over the lobes of the lungs. Injury can be caused if the percussion (clapping) is done incorrectly, so it is necessary to get accurate training, and to feel comfortable about what you are doing. During this procedure, the child is held downward and prone (face down). This position helps to facilitate the removal of the mucus. Elevating the foot of the bed (postural drainage) to help promote drainage of secretions can also be beneficial. The use of an expectorant (e.g. Robitussin®) was also recommended to help loosen secretions in the lungs.

“When my son is congested, I encourage him to cough by saying ‘cough' and then I mimic a cough. He eventually does cough, and I give him lots of positive reinforcement. Who knows if he really gets it. I'd like to think that he does.”

Suction And Updraft Machines

Because of the ongoing potential for respiratory problems in our children, two important pieces of equipment should be considered for the home: a suction machine and an updraft machine.

If a child does have intermittent wheezing, he or she may need an updraft machine, which delivers bronchodilator medication (opens up the airway) in an efficient way. Having a suction machine at home, although it may actually never be used, will give you peace of mind and may save you an unnecessary, frantic trip to the emergency room. A suction machine is especially convenient to have around during colds and to suction out the extra secretions from the back of the cough that your child may have difficulty swallowing. Make sure that you receive thorough instructions on how to suction and that you are comfortable with the procedure.