What to Ask Your Doctor About Infants and Children with Hydrocephalus

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    Creating and maintaining a good relationship with qualified doctors is one of the most important elements of overall healthcare management. Some people feel nervous when speaking with a doctor, especially a neurosurgeon. It is important, however, to find out about the doctor’s experience and whether there is a good “fit” between the doctor and your family before entrusting him or her with your care or the care of someone you love.

    It is your role as a parent to become an active member of your child’s Healthcare Team. Being prepared and having questions ready to ask your child’s doctor will help you communicate effectively about your child’s diagnosis, treatment options, and ongoing management of care. The better informed you are, the more equipped you’ll be to manage your child’s condition. Knowing what questions to ask your child’s doctor can help you get your child the best care.

    It is helpful to bring someone you trust to your doctors’ appointments. It is difficult to manage all the information and emotions you may experience during the appointment. Having a family member or friend accompany you can not only provide comfort and support but also provide an impartial opinion and a second set of ears to review the information with afterward. He or she may also be able to help you by taking notes for later referral and clarification.

    Questions About Your Child’s Diagnosis

    • Please explain hydrocephalus to me in simple terms.
    • What type of hydrocephalus does my child have?
    • What caused my child’s hydrocephalus?
    • How many children with hydrocephalus do you care for each year?
    • What have been the results for these children? Did they have a similar diagnosis?
    • Does my child need to undergo any additional tests?

    Questions About Treatment

    • What are the treatment options?
    • Which treatment method do you plan to use and why?
    • What are the potential benefits and risks of each treatment option?
    • What makes you believe this type of treatment will be helpful for my child?
    • What is the success rate in patients of my child’s age?
    • Please describe the different types of shunt systems.
    • If applicable, which shunt system do you plan to use and why?
    • Please describe the different types of valves.
    • If applicable, which type of valve do you plan use and why?

    Questions About Surgery

    • Please explain my child’s surgery to me in simple terms
    • How many hydrocephalus related surgeries have you performed? How many in the past year?
    • In general, what were the outcomes? What were the common complications, if any?
    • Is there anything I can do to proactively strengthen my child’s body before the surgery?
    • Do you prescribe prophylactic antibiotics?
    • How long will the surgery take?
    • Where and how big will my child’s incision(s) be?
    • Will you shave my child’s head?
    • Will you use sutures or staples to close the wound(s)?
    • How will my child feel after the operation?
    • If my child has pain, how will it be controlled?
    • How long will my child be hospitalized after surgery?
    • Brain surgery is a major procedure with possible serious complications. Is there anything you can tell me that will help allay my fears?

    Questions About Complications

    If the potential complications have not been addressed in the answers above, you may want to ask specifically about them.

    • Please tell me more about the different types of complications.
    • Please tell me more about insidious shunt failure (shunt failure with very subtle symptoms).
    • Please describe the signs and symptoms of a shunt malfunction (shunt failure), infection, and/or ETV closure.
    • If I suspect my child is having a complication, what types of testing and evaluation is needed or required?
    • Does infection happen often in your experience?
    • What do you do if there is an infection?
    • How can I recognize the signs of infection?
    • How long do I need to continue to watch out for this after my child leaves the hospital?
    • Can you tell me more about slit ventricle syndrome?
    • How often does slit ventricle syndrome occur in your personal experience?
    • What steps do you take to prevent slit ventricle syndrome?
    • Who do I call in case of an emergency? Do I call you when I have a question or if I suspect there is a problem, or do you have a nurse practitioner or clinical nurse specialist?
    • If I have to take my child to a hospital emergency room, which one should I go to? Is there anything I should take with me – previous scans, etc.?

    Questions About Recovery

    • Who will be involved in my child’s recovery care?
    • Will you prescribe rehabilitation services after surgery to increase my child’s chances of recovery? If so, what kind and how do I get connected to those services?
    • How long is the recovery time?
    • Will there be any restrictions after surgery for my child in terms of activity?

    Questions About Ongoing Management

    • Will my child need interventional services such as physical therapy (PT) or occupational therapy (OT)? If so, how will these benefit my child?
    • Does my child need to work with any other specialists (i.e. neurologist, ophthalmologist, etc.)?
    • Who will be in charge of my child’s follow-up care? Will you continue to monitor my child’s condition or will another specialist?
    • Do you recommend a regular interval of follow-up visits, including regularly scheduled scans?
    • How do I obtain access to my child’s medical records? Can I get copies or access my electronic file? This can help when you meet a new specialist or if you’d like a second opinion.

    Questions About Social Concerns

    • How will my child’s daily life be affected long term?
    • Will my child have physical limitations or other restrictions? What sports and/or activities can my child participate in?
    • Will my child experience different symptoms or cognitive problems?
    • Are there any lifestyle changes I should consider for my child?

    General Questions

    • What support resources are available for me and/or my family?
    • Who can I speak with about my financial and/or insurance concerns?
    • Who can help me navigate the medical system?
    • You are a busy person and I appreciate the time you have taken to answer my questions. After I get home and have time to digest all this information I will probably have more questions. Is there a medically knowledgeable person I could call, like a physician’s assistant (PA) or nurse practitioner (NP), as these questions arise? Or should I contact you directly?

    Questions to Ask Yourself

    Although your specialist has answered all of your questions there still may be some questions you need to ask yourself. For example, should I consider looking for a doctor to provide treatment or offer a second opinion? If the answer is yes, HA has developed an online Physician Directory. Our Physician Directory includes neurosurgeons, neurologists, and neuropsychologists. Finally, ask yourself if there is anything more you can do to ensure you continue to live a high quality of life. To learn more visit, Caring for a Child.

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