Discussion Guide
PBD-ZSD Liver Symptom Checker Results
Thank you for completing the PBD-ZSD Liver Symptom Checker. Below is a summary of your answers, followed by some additional information and questions that you can download to begin a discussion with your doctor.
PBD-ZSD Liver Symptom Checker Questions and Answers
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Based on your answers, your child may be showing signs of liver involvement. To be sure, talk with your child’s doctor about running an important test called an atypical bile test. Free testing is available if your child is diagnosed with PBD-ZSD.
Questions to ask your doctor
- How rare is PBD-ZSD? Is he/she managing any other patients?
- How might my child’s symptoms change over time?
- Will my child develop any other symptoms? If so, can they be prevented or managed?
- Is PBD-ZSD treatable? If so, what treatments are available?
- Are you familiar with the recommended guidelines for treating and managing PBD-ZSD?
- Which specialists will I need to work with, based on my child’s symptoms? Can you provide a referral?
- Routine liver function tests are recommended for people with PBD-ZSD. How would I go about getting my child’s liver tested?
- How often should we run tests to check on the health of my child’s liver?
- Does my child need an atypical bile acid test? If so, how would I go about getting his/her bile acids measured?
- Is my child meeting height and weight benchmarks compared to other similarly aged children?
- Should I modify my child’s diet?
Write down any other questions you may have in the lines below:
Which doctors should I talk to?
Since PBD-ZSD affects many parts of the body, you may need to work with different specialists to provide the best possible care for your child. Depending on your child’s symptoms, you may need to talk to doctors who specialize in:
- Nutrition and growth (Hepatologist, Gastroenterologist, and Nutritionist)
- Vision (Ophthalmologist)
- Hearing (ear, nose and throat [ENT] or Otolaryngologist/Audiologist)
- Nervous system (brain/spinal cord) (Neurologist)
- Liver function (Hepatologist/Gastroenterologist)
- Kidneys (Nephrologist)
- Hormone imbalances (adrenal) (Endocrinologist)
- Bone health or abnormalities (Endocrinologist)
- Teeth (Dentist)
- Speech, control of muscle movement, or walking (Speech, Occupational, and Physical Therapist)
- Geneticist and pediatrician, which help manage primary care and routine management of child’s care
Use the questions below as a guide when discussing your child’s condition with a particular specialist.
Ask the following questions for each body system/function that affects your child.
- When was the last time my child had his/her _____ checked? What were the results?
- Are there any changes in my child’s ______ we should address?
- When should my child get his/her next evaluation for ______?
Write down any other questions you may have in the lines below:
You can download this guide and bring it to your child’s doctor’s appointment.
