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Medical issues

You can support a girl with an illness or disability who has to deal with doctor’s visits, medication, and more. Trying to stay organized — and working to stay positive — can help a lot. Keep reading to learn more.

• Working with doctors and other health care professionals
• Dealing with medication
• Helping with pain
• Paying for care

Working with doctors and other health care professionals top

A girl with a serious illness or disability may need to learn some new skills or relearn old ones. She can work with rehabilitation specialists trained to help her do that. Read more about physical therapy, occupational therapy, and speech therapy.

You, the girl you care for, and her doctor are a team. Here are some ways to work well together:

• Ask questions. Write questions down in advance, and take notes on the answers. Encourage your girl to do the same thing. She can use our treatment planner to keep track of her doctor’s instructions.
• Speak up. You know the child you care for, so don’t be afraid to say what you’ve seen work well for her. If you don’t agree with a doctor’s suggestions, explain why. If you can’t come to an agreement, or if you think the doctor may be missing something, you can always go for a second opinion. Learn more about getting a second opinion.
• Keep records. Keep track of tests, medicines, procedures, and health problems your girl has. Also keep a history of diseases that close family members have, and give a copy to the doctor.
• Encourage honesty. The girl you care for needs to be honest about her symptoms and self-care, even if she’s embarrassed. Remind her that doctors and nurses have probably heard it all before! She can print out a health worksheet to keep track of how she has been feeling.
• Make sure your girl understands what the doctor says. Instead of just asking if she understands, when you get home you might see if she can explain it to you.

As your girl gets older, your job will shift. Gradually, instead of taking care of her medical needs, you should help her learn to take care of them herself as much as possible. She can see how much she knows by using our online health skills checklist. You and she will also have to prepare for the shift from pediatric care to adult care. The pediatrician and the new doctor can meet or talk on the phone to make the transition smooth.

Dealing with medication top

Medications can be an amazing help, but they need to be taken correctly. Help the girl you care about stay safe when dealing with medications. Make sure she:

• Follows all directions carefully. The directions should come from the doctor or be printed on the package.
• Keeps her medications organized. Try a chart or a pill box divided by days. Learn what to do in case of a missed dose.
• Reports side effects. She should know what to do if she has any serious side effects, like trouble breathing.
• Never shares medications. Just because a medication is safe for one person doesn’t mean it’s safe for someone else — even if they have the same condition.
• Knows not to stop certain medications suddenly. Some medications need to be stopped slowly, following a doctor’s directions.
• Makes sure a prescription medication is right. If a refill looks different from the original, ask the pharmacist if you got the right medication.
• Finishes all the doses of an antibiotic even if she feels better. Stopping an antibiotic too soon risks not killing all the germs. Taking an antibiotic when it’s not necessary is a problem, too, so doctors shouldn’t be pressured to prescribe antibiotics.
• Tells the doctor right away if she is pregnant or sexually active. Some medications can cause problems for a growing baby.
• Tells you or the doctor about all medications, vitamins, and herbal remedies she’s taking. Some of these can be dangerous together.
• Knows about any medication allergies she has. Make sure any other caregivers know about them, too. Also, make sure her doctor has a list of her medication allergies and medications that might be a problem for someone with her condition. (You usually can get a list of medications that might be a problem from an organization that focuses on her specific condition.)

Helping with pain top

It can be awful seeing someone you care about suffer. Here are some ways you can help:

• Make sure your girl knows to tell you if she has pain. Tell her that nobody will think less of her. And you can’t help if you don’t know what is happening.
• Encourage her to tell the doctor about her pain. It can help a doctor to know:
• Where it hurts
• How strong the pain feels
• What makes the pain worse or better
• How long it lasts and how often it comes
• Ask the doctor about a pain clinic. If pain is severe or ongoing, a pain clinic team might be able to help.
• Help her learn ways to cope with pain. These include:
• Doing something to distract herself, like listening to music
• Using imagery, which means imagining she is somewhere soothing
• Getting a massage
• Applying a cold or warm pack
• Breathing deeply or meditating
• Stretching or doing gentle exercise

Paying for care top

There’s a lot to know about paying for health care and about government services. Your doctor’s office, a social worker, or state office on disabilities may be able to help. Here’s some information to get you started:

• Visit healthcare.gov. You can learn about your insurance options, find out if you qualify for Medicaid, locate free or lower-cost health care in your community, and more.
• Social Security offers benefits for disabled children. Your local Social Security office can tell you what to apply for and how. Learn more about disability benefits.
• If you have a job, your company may have an Employee Assistance Program (EAP). EAP staff may be able to help you find low-cost services, including mental health services. EAP staff work with you confidentially.
• You can get help paying for medications. There are lots of options, including ones from the Partnership for Prescription Assistance and from medication makers. You can start by asking your doctor’s office.

Content last updated January 7, 2011

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