Symptom Management

Dermatology

Good Skin Care: Avoiding Problems

Good skin care is especially important for many reasons. Our children are relatively immobile and are susceptible to skin breakdown and pressure sores. Frequent turning and position changes are essential. Body prominences, such as hips, shoulders, shoulder blades, etc., should be checked regularly for redness or irritation (pressure areas). If a pressure area shows up, the child should be kept off that area until normal circulation resumes. Any skin breakdown should be monitored for signs of infection (redness, swelling or discharge).

Because our children are in diapers, frequent changing of wet diapers is important, both for asthetic reasons and because prolonged exposure to moisture can cause rashes.

Good skin care around the G-tube (Gastrostomy tube) site is important to help cut down on drainage, prevent infection and to keep the child more comfortable. The area can be cleansed with a solution of half hydrogen peroxide and half water. This will sanitize the area and help to debride (remove) any buildup of secretions. If there is an area that looks irritated at the stoma site (opening for the G-tube to enter the stomach), an application of a silver nitrate stick will cauterize the area, promoting healing. This causes momentary discomfort, but the subsequent healing from the application should reduce the drainage at the site. If there is chronic drainage and redness at the site and no obvious sore spot, the irritation may be a reaction to the material the G-tube is made of. In this case, it may be worthwhile to consider changing the type of material (e.g., latex to silastic). (See G-Tube section.)

Bathing

Bathing is a special time to be with your child, although it does require some organization and planning. The bathing room (bathroom or kitchen) should be warm. A time should be set aside and things should be relaxed, without too much interruption (e.g., phone). The temperature of the bath water should be tested first by you (using your elbow) to make sure it is not too hot. Soap should be used sparingly; too much can cause skin dryness and itching. Talcum powder should not be used at all, as it can be inhaled and may cause lung irritation.

One family recommends using dotted jersey gardening gloves for handling a slippery child during bathing. This is especially important when taking the child in and out of the tub. The gloves also provide some nice tactile stimulation as you are washing your child. Using a Water Pic shower massage was also recommended to provide tactile stimulation.

A regular kitchen sink may be fine for bathing your child for awhile (the height is usually good). You may want to consider installing a longer sink to accommodate your child as he or she grows.

Eventually your child may outgrow any sink, and you will need to try tub-bathing. Since lifting a heavy child in and out of a regular bathtub can be difficult, bathroom renovations may become necessary. If financially feasible, consider installing an elevated bathtub with a hand held shower. This makes it easier for an older child to be bathed in a bath seat, and lifted in and out of the bathtub. One family had this type of tub installed. When it was not being used for the child, a movable step was placed in front of the tub, giving it the appearance of a “Roman Bath.” They also installed a sink with a long counter, making an excellent changing table.

Good bath supports will make life easier. When your child is very young, you can place him or her on a bath sponge, or a “Tubby” inflatable raft-type cushion. An inflatable bath pillow will help to support the child's head. This is especially helpful with children who have enlarged, heavy heads. Rifton makes an excellent bath seat. Columbia makes another. One family designed their own seat with PVC piping and lawn chair-type webbing from a hardware store.