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The Parent as Advocate

Originally published on November 10, 2009
Most recently updated on April 10, 2013

An advocate is a person who speaks in support of, or pleads the cause of, someone else. You are the best advocate for your child. Sometimes your child’s voice will be heard only if you speak up.

It’s important to keep a diary or journal of your child’s health from day to day. (See the back of this book for recordkeeping forms.) Keep a record of any unexplained symptoms, such as fever or changes in behavior, along with any suspected side effects. If there are neurological, emotional, or physical changes in your child, a journal will help you describe these to your specialist. Note the date, time, and duration of these symptoms. You should never give your child any medication, including Tylenol, vitamins, or holistic herbs, without discussing it with your child’s doctor first.

In addition, parents often think of the questions they want to ask the medical team when the team is not available. Keep a running list of your questions for your next meeting and bring along the list. These are some of some questions you might want to ask:

  • What symptoms or side effects need to be reported to the doctor?
  • What constitutes an emergency?
  • How can I monitor healing or changes?
  • Is there anything I can do to minimize side effects?
  • Exactly what activities are allowed or restricted?

Listen carefully to the answers provided by your child’s doctor and take notes. It’s a good idea to make a habit of always carrying a notepad and pen. And as mentioned earlier in this chapter, you may want to have a family member or friend go with you to discussions or meetings with the doctors—it’s surprising how much information you can miss. Ask the doctor if you may bring a tape recorder to meetings if no family member or friend can attend.

Keeping records of clinical visits and treatments can be helpful for your own reflection. Note things such as

  • Blood count levels
  • Treatments administered at the clinic
  • Medications prescribed or given
  • The doctor’s recommendations
  • Your child’s response to the treatment

Be sure to keep track also of authorization numbers, referrals, mileage, and expenses. And do keep a separate list of the professionals involved with your child and how to contact them (by phone, fax, or e-mail).

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