Symptom Management
Neurology
Irritability: Comforting Your Child
Many of our children have seizure disorders of one kind or another. Although undesirable, seizures may not be as damaging to a child as we might expect, as long as the seizure is not prolonged. A prolonged seizure can cause anoxia (loss of oxygen) to the brain.
Seizures usually can be controlled with medication. The kind and amount of medication may change over time. An increase in the frequency or severity of a child's seizures may be due to a progression of the disease or may indicate that the dose of the anticonvulsant is not high enough for his or her weight. Optimum doses of medication can be monitored in part by blood levels drawn on a periodic basis. In some cases, vigorous efforts to control seizures may not be justified.
Fevers tend to go quite high in our children and can accelerate quickly because of the instability of the fever center in the brain. High fevers need to be treated aggressively, because they can precipitate seizures.
You need to know how to read a glass thermometer. It is best not to rely on digital thermometers, as they can be inaccurate. Rectal temperatures are most accurate (three minutes). Axillary (under the arm) temperatures take too long (ten minutes).
Always have acetaminophen (Tylenol®) on hand for fevers. Never use aspirin for fevers because of the risk of Reye's Syndrome. Have the acetaminophen available in both suppository form and liquid form so that you have options for use. Use the acetaminophen for any fever over 102 F. (Ask your health care professional if he or she wants it given sooner than this.) Fevers under 102 F should be closely monitored for sudden elevation. With a very high fever, over l04F, you can try a sponge bath (not tub bath) using tepid water (lukewarm). Lay the moistened cloths on the child's forehead, armpits and groin. Another method to control high fevers is “fanning” the body with a hand-held fan or piece of paper to promote evaporation. If you use an electric fan, make sure it is across the room from the child. Keep your child covered with a sheet or light blanket so as not to chill the body too quickly.
Irritability: Comforting Your Child
One of the common symptoms of neurologically impaired children is irritability. Irritability can be caused by neurological immaturity or the disease progression itself. It is often compounded by related conditions such as reflux, orthopedic problems or other discomforts. Your child may “grow” out of a stage of extreme irritability as he or she matures. If irritability is ongoing, and you sense your child is experiencing discomfort, speak to your health care provider. A specific problem could be identified and corrective measures taken. For example, esophagitis (inflammation of the esophagus) caused by reflux can be very uncomfortable for the child. A fundoplication may correct the reflux problem (See G-Tube section.)
One of the many challenges we must face is how to console an irritable child. The challenge is not only in finding ways to console your child, but also in finding ways to take care of yourself, as the child's irritability can be ongoing and very stressful.
“When my son was in for an asthma admission , prior to G-tube insertion, I recall one night that I'll never forget. The only thing that would console him was having me walk him up and down the halls. I did this for six hours straight, holding him in my arms with an IV pole in tote.”
Singing, humming, or just the sound of a familiar voice can help. Music is soothing also. Sometimes the child just needs to hear a continuous familiar sound. One thing that usually works is motion: holding, rocking or walking the child.
“We had our washing machine in the kitchen. When my son became fussy, I would put him on top of the washer in his infant seat, and put it on spin. The vibration would always console him.”
(If you decide to try this method, make sure that the seat is secured somehow to the washer and that the child is strapped into the seat.)
It is important not to overstimulate a child if he or she has a tendency to become irritated. For example, many children get extremely upset when their faces are touched. Loud or sudden noises, although enjoyed by some children, may cause irritability in others. Sometimes a child can be kept more comfortable with medications to alleviate discomfort or encourage sleep.
“There were times when I would become so frustrated because of the constant irritability that I would just resort to giving him a medication for sleep. Nothing else seemed to work. I had to convince myself that this was O.K. to do.”
Sleeping difficulties are a common problem with these children. They may be up several times a night for various reasons: muscle spasms, reflux discomfort, nasal congestion. They may not take naps during the day. It may not be possible for your child to “cry himself to sleep.” As the crying becomes more intense, muscle tone, reflux or wheezing can increase causing greater discomfort. Occasionally, just patting the child on the back will work, but often he or she will have to be picked up and held, rocked or sung to. If sleeping problems are chronic it may be helpful to consider giving a sleeping medication on an occasional basis. Chloral Hydrate is probably the most useful sleeping medication available for our children.
Some suggestions: Providing a warm, comfortable bed is essential. Water mattresses are excellent for our children. Sheep skin pads and egg crate foam pads also work well. If your child has difficulty going back to sleep at night, try to arrange medications and treatments so that he or she does not have to be awakened. If the child does wake up, do the diaper change, turning, treatment or medication during that time, if at all possible.