NAF Meeting 2013 Detroit  Taken sometime at the beginning of our quest

Routine Periodic Testing Return to Index
Once an FA'er has been diagnosed there is then the need within a reasonable time span (three months to a year) to have some baseline tests done. Not that the FA'er may have any of these phenomena happening at this time but if in the future they develop any of these FA-known symptoms the FA'er will have pre-symptom baseline readings to compare with. Some of these tests could/should be updated periodically.

Periodically repeated (yearly?):

  • Echo, looking for Hypertrophic Cardiomyopathy (HCM) or other signs of cardiomyopathy
  • Scoliosis
  • Diabetes
  • Troponin
  • Impaired Glucose Tolerance/elevated glucose
  • CBC blood test
    • WBC (white blood cells which fight infection)
    • RBC (red blood cells which carry oxygen)
    • Hgb (hemoglobin, the oxygen-carrying protein in red blood cells)
    • Hct (hematocrit, the proportion of red blood cells to the fluid component, or plasma, in your blood)
    • Platelets, which help with blood clotting
  • Basic metabolic (electrolyte) panel test measures the levels of eight important things in your blood
    • Calcium. Calcium plays a role in keeping your cells working the way they should.
    • Carbon dioxide
    • Chloride
    • Creatinine
    • Glucose
    • Potassium
    • Sodium
    • Urea nitrogen, or BUN

Repeated when symptomatic and least important in this list to get done sooner than later:

  • Full vision exam including optic nerve atrophy by an ophthalmologist
  • Hearing (especially high background noise test)
  • OSA (obstructive sleep apnea)

In FARA's Clinical Care Guidelines, pages 17-28, some of these tests are covered in more detail, with additional detail throughout the full document.

And of course the parents on FAPG's Email group are available anytime for questions and discussion. If you are not part of FAPG and are the parent of an ataxian go here to join. If you are not a parent but have a need for information, Email pkonanz@comcast.net.


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