Health Care At Home

Children with sickle cell disease need some extra health care at home to help them stay well. Giving your child penicillin twice a day (at least until age 5) is one of the key parts of good home care. Extra fluids and a good diet also help to keep your child well. With just a little extra care, your child can be active, go on trips, and do almost all of the things that other children do.

Your doctor will tell you when to start giving your baby penicillin. He will need it twice a day, once in the morning and once in the evening. Studies have shown that daily doses of penicillin for babies and young children with sickle cell disease greatly reduce the number of infections they get. Your doctor will write a prescription for your child. Making sure your child gets his penicillin is one of the most important things you can do.

Your child needs to take a dose of 125 milligrams (mg), twice a day, until he is three years old. At three years of age, the dose will double to 250 mg, twice a day. If your child is allergic to penicillin, erythromycin can be given instead.

Keep giving your child penicillin until your doctor or nurse practitioner tells you to stop. Don’t stop because your child feels well or sick, unless your doctor tells you to stop. Most doctors recommend taking penicillin until at least age five.

Pills

It is better to give penicillin in pills because they last for several years. Liquid penicillin only lasts for two weeks after you get it from the pharmacy, at it must be refrigerated.

Pills can be crushed and mixed with a teaspoon of applesauce, ice cream, or flavored yogurt. It is not good to put them in formula or juice because the baby may not drink all of it.

Liquid

Liquid can be given by spoon or dropper. Liquid penicillin should not be put in a baby’s bottle because the baby might not drink all of it.

Shots

If your child is having problems taking penicillin at home, penicillin shots can be given once every three weeks at a doctor’s office.

Amounts of Penicillin
Age	Dose
2 months – 3 years	125 mg 2 times a day
Over 3 years	250 mg 2 times a day

Helpful Hints

It can help to give the penicillin at the same time each day. Involve your child as he gets older. Make it a game or put your child in charge of how he takes it. Even a four year old can help remind you that he needs to take his pills.

Fluids

Children with sickle cell disease need more fluids than other children. They usually get thirsty more often than other children. Give your child fluids whenever he is thirsty. Fluids can include any clear liquids like water, juices, or soft drinks. Keep enough fluids on hand so that your child can have as much as he wants.

Special times when your child needs to drink more

Your child needs more fluids when:

- He has a fever.

- He has pain.

- It’s hot outside.

- He is very active.

- He is traveling.

Your child may not want to drink a lot of fluids at these times, but he still needs them. You may have to push your child to drink more clear fluids. Try ice chips, popsicles, jello, milk, or soup as well as water, juices, and sodas.

Use the chart below to figure out how much fluid your child needs during these special times.

A baby who is breastfeeding or on infant formula only needs extra fluids during special times. At these times, you need to encourage him to take all of his breastmilk or formula, unless he is vomiting.

Amount of Clear Fluids Your Child Needs Each Day During Special Times
Child’s Weight	Number of 8 oz. Cups Per Day
10 lb	2 cups
15 lb	3 cups
20 lb	4 cups
25 lb	5 cups
30 lb	5-6 cups
35 lb	6-7 cups
40 lb	7 cups
50 lb	8 cups
60 lb	9 cups
More than 60 lb	10 or more cups

Nutrition

Like everyone, children with sickle cell disease need to eat a well-balanced diet. Because their red blood cells break down faster, they need to have good food sources of protein, vitamins and minerals every day. They also need to have more calories in their diet to make new cells.

Vitamins

When your child is about a year old he may be given a vitamin supplement called folic acid, 1 mg a day. This can be crushed and mixed with milk, juice, or food. Folic acid helps the body make new red blood cells. Some children don’t need extra folic acid.

In addition to folic acid, some children with sickle cell disease may need to take other vitamins and minerals such as zinc, iron, and vitamin E. Your doctor will prescribe these when needed.

You can also give your child a multiple vitamin without iron if you want, but it isn’t necessary.

Height and Weight

Your child may be smaller or thinner than his brothers and sisters, even with a good diet. That is because he has to use more energy to make new red blood cells. As he grows older, he will usually catch up.

If you are concerned about your child’s weight or eating habits, talk to a nutritionist who knows about sickle cell disease. She or he can evaluate what your child is eating and suggest changes if they are needed. These changes may include giving your child extra snacks or more calorie-rich foods.

Active Play

Sickle cell disease won’t keep your child from doing most kings of activity that he enjoys as long as he takes care of himself. Taking care of himself means:

Resting when he feels tired.
Drinking extra fluids when he is active.
Dressing for the weather.

Tell your child to rest as often as he needs to. Then let him find his own level of activity and enjoy it.

A few activities can sometimes cause problems related to sickle cell disease and should mostly be avoided.

Ones that expose him to cold temperatures, such as swimming in cold water.
Ones at high altitudes, such as backpacking, hiking, or skiing.

If your child wants to do any of these, talk to your doctor first.

All preschool and day care playground activities and most elementary PE class activities are fine for your child. If he is in a program where there is a leader or a teacher, tell them about your child’s need to drink extra fluids and to rest when he is tired. They can help your child take good care of himself.

Taking a Trip

Most travel is fine for children with sickle cell disease. There are a few rules your child should follow when you take a trip.

Fly only in a pressurized plane.

This should not pose a problem for most trips because almost all commercial planes are pressurized.

Drink plenty of fluids when traveling.

This is important when you child is:

- flying in an airplane

- riding in a car

- visiting an area that is very dry

- riding or walking at high altitudes

Be careful at high altitudes (above 5000 feet).

If your child is riding in a car or walking above 5000 feet, he needs to rest often and drink plenty of fluids. If he starts to feel sick, take him to a lower elevation.

Let your doctor know if you plan to take your child on a trip and ask him or her for a “Travel Letter.”

Make sure that you take along the penicillin your child needs as well as any other medicines he is taking. Talk about your plans with your doctor to see if any other special care needs to be taken.

Travel Checklist

- Talked to doctor

- Travel letter filled out by doctor

- Filled prescription for penicillin

- Made arrangements for other medicines

- Packed extra fluids

- Names and addresses of doctor or center to contact if needed

- Thermometer

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All material in this document is from “A Parents’ Handbook for Sickle Cell Disease” by Shellye Lessing, MS; Elliot Vichinsky, MD – editors from the Children’s Hospital – Oakland Sickle Cell Center

All other credits go to their respective education programs, directors, health departments, and research facilities.