Home Care Plan Quick Reference Guide

Eyes:
Easily irritated due to decreased blink reflex, diminished tears and medications (Tegretol). Protect eyes with sunglasses from wind and sun. Lubricate with artificial tears, lubricating ointment. Treat redness with Allergy eye drops like Visine AR.

Ears:
Prone to infection. Clean easily with cotton ball moistened with hydrogen peroxide. Squeeze fluid into ear canal. Wax will soften and bubble to external ear making it easy to clean with a Q-tip or washcloth.

Nose:
Easily congested. Keep clear with nasal saline spray or Lil Noses saline gel, warm cloth to sinus area loosens mucous for removal with bulb syringe. Breathe Right Strips or Vicks help open nasal passages. Prescription Nasal Steroids will help prevent swollen nasal passages. (Flonase or NasacortAQ) if necessary Nasal Suctioning (infrequent)

Mouth:
Clean mouth frequently to prevent upper respiratory infection. Use toothettes or toothbrush and if possible floss regularly. Gly Oxide is a mouth cleaner that bubbles and loosens debris. Brush tongue and roof of mouth to prevent drying and fissuring. May be prone to thrush due to drooling, suctioning, mouth breathing and some medications. Observe for a white coat on the tongue or irrated tongue. Treat with Nystantin suspension and apply with a toothette. Prevent thrush by using it daily. Keep lips moist with lip balm.

Secretions and Suctioning:
As a disease progresses, children will require more frequent suctioning. Delicate balance between drying secretions up and keeping mucous thin. For keeping mucous thin and moving may just try plain Robitussin syrup. Can be given on a regular schedule or just when mucous is thick. Mucomyst is a medication given through a nebuliser that thins out secretions and prevents mucous plugs. Secretion can be reduced with several different medications: antihistamines (benadryl claritin) or anticholinergics (robinal, scopolamine, levsin) Klonopin (seizure medication) can cause increased salivation. Breathing treatments: Give several a day when mucous thick. Use saline, mucomyst for thick secretions. Use albuterol for wheezing.

Pelvis/Knees/Feet:
Hips can come partially out of the socket due to decreased muscle tone and spasms. Range of motion exercises, pelvic tilts, and massages are helpful. If a urinary catheter is needed, hips need to be able to open. Little girls on antibiotics may develop yeast infections. Prevent by feeding yogurt, and giving acidophilus. Treat with antifungal cream (nystatin, lotrimin, monistat) Exercise knees to maintain flexibility and prevent contractures, ROM of feet to prevent foot drop: wrote alphabet with feet.

Face:
Prevent chapping from drooling weather. Use diaper cream such as Blamex to help heal very chapped areas. Face exercises help reduce tightness of face relax throat and neck to reduce facial twitching. Massage face, open and close mouth, move jaw forward and backwards gently.

Neck:
Exercise and massage to reduce neck and shoulder tightness. Chin to chest, ears to shoulders, chin to shoulders, shoulders shrugs and circles.

Chest and Back:
Open chest and stretch upper body by lying on back and massaging chest and shoulders. Chest PT (gently clapping on back with cupped hands feels good and helps loosen and mobilize secretions.) Back may have scoliosis (curvature of the spine). Massage and chiropractic may be helpful in reducing severity or discomfort from scoliosis.

Abdomen:
Constipation is a common problem. Early on karo syrup, fruits and vegetables may be enough. Later may need fiber like Metamucil. Can be given through tube in a bolus. ¼ to ½ tsp if Metamucil in 4oz water. Fiber pushes stool lower in bowel so it can be expelled. May still need enema or suppository to get the urge to push stool out. Pedisure with fiber, Soy formulas, Slim Fast all have increased fiber and may help.

Feeding:
Use soft tipped or shallow bowl spoon. Early on children need high calorie high protein foods. Use thick it, dried potato flakes to thicken foods, liquids. Feed in as upright position as possible. Utilize family support to help puree meals ahead of time. Older kids on tube feedings may need fewer calories as they move less. If tube feed may need to switch to lower cal formula or less food. Replace volume with water. As illness progresses may not tolerate feedings. Burping hiccupping can alert you to this. Slow rate of feeding may help or you may discontinue that meal, and reduce rate of next meal.

Bladder:
May develop difficulty emptying bladder. Problem may occur only occasionally and then progress to most of the time. May require intermittent urinary catheterization to empty bladder. Some additional strategies: massage lower abdomen to relax bladder wall, cranberry juice or tea for prevention of bladder infection, corn silk tea acts as mild diuretic and gives urge to go.

Skin care:
Keep skin healthy by keeping child hydrated and preventing pressure on any area for an extended period. Shift weight frequently if on lap, in chair, or in bed. Watch pressure points such as ears, elbows, hips and back, knees, ankles, and heels. Use very little soap to prevent drying. Moisturize skin with lotions. Use sheepskin, egg crate mattress, or water bed to decrease pressure. Clean around feeding tube regularly. May use hydrogen peroxide if build up of secretions. Prescription treatments like bactriban ointment if site looks reddened or has an odor. If granulation tissue is causing leaking around tube, notify your provider. A silver nitrate stick may be used to treat this.

Exercise and Physical Therapy:
Movement is fun and prevents pneumonia, contractures, skin breakdown and reduces muscle spasms. Therapies consider: Aroma therapy, music, massage, chiropractic, craniosacral, arts and crafts. Equipment to consider: Large exercise balls, hand held vibrator/ massager, hot tub or bubble jet for tub, kiddie pool, swings, wagons, sleds, bean bags, small pillows or stuffed animals to support body.

Playtime:
Counting, singing, reading, rhyming, swinging, riding in wagon, wheelchair in car. Enjoy outdoor sounds, wind, sun, sand, pools, holding horses, kite, fishing line, and all kinds of music.

Other equipment as children get older:
Captain Beds (elevated bed with drawers underneath), bath chair, portable suction machine, nebulizer machine, power converter to use equipment in car, stroller, or wheelchairs, custom seating system. Utilize school resourced to put you in touch with equipment suppliers,

Antibiotic use:
Early in disease process antibiotics may be used as respiratory or bladder infections occur. Later in life they may be given on a regular basis to prevent severe infection. For example giving Augmentin 400mg daily.

Precocious Puberty (girls):
May develop early onset of puberty with breast buds pubic hair and under arm hair. Age of onset varies from 2 to 4yrs of age.

Frequent Tay Sachs Moves:
Startle reflexes (lessens with age), Huge yawns, Arm raises without a sound (hooties), Passing out (may be seconds to many minutes, to hours, flushed face and ear (only one side common), and body temp changes (cold 96 degrees)

Community Resources:
Easter seals, United Way, Early intervention programs, State Medicaid waiver, Children’s special health care services, Respite and sitter services and Intermediate school services.

Supplements used:
Echinacea: Used during acute illness. One dropper times a day to boost immune system. Stop once acute illness is resolved. Can be used two weeks on two weeks off.
Astragulus: One dropper daily to boost immune system.
Maitake mushroom tea: Can be taken during acute illness to help immune system.
Milk Thistle: Helps liver repair itself, disease and seizure meds can elevate liver function studies.
Corn silk tea, dandelion tea, hawthorn berry tea: All function as diuretics from mild to moderate in strength.
Acidophilus: Good bacteria, helps prevent diarrhea and yeast infections from antibiotics.
Calcium and magnesium: Help relax smooth muscle, may help reduce seizures.
Valerian root tincture: Mild seductive, use intermittently to help relax muscles.

Websites:

Exceptional Parent Magazine

Therapy equipment and toys: Abilitations catalog

Disabilities.com - Offering a wide range of special needs services

Clothing

Rifton: 1-800-771-424 - Seating and bath chairs

HDIS: 1-800-269-4663 - Larger diapers and bed pads