Stay Up to Date! Like us on Facebook  and Twitter  for the latest news and announcements    

Helping the Patient/Caregivers to Become Good Evaluators

A patient's caregivers (the parent, the spouse, or other family member) are often superb observers who appreciate the minor and major symptoms that a patient displays when s/he is not feeling well.  They also know what a patient's baseline level of good health looks like.  However, the vast majority of caregivers are not medically-trained and so may not be able to assess properly or fully the severity of a patient's symptoms.  Furthermore, they may be unable to discern appropriate behavior or physical findings that do not require intervention from those that require attention and action.

Some examples

  • Some patients show skin mottling all the time.  Its presence does not necessarily imply instability or impending worsening.  A change in baseline is a more telling characteristic.
  • A lower temperature or higher temperature may be the patient's baseline and not reflective of a change in condition.
  • Excessive sleeping may be appropriate given the patient's recent experience - excessive activity, prolonged exposure to hot weather, and so on and are not reflective of disease progression.

It is the nature of mitochondrial disease that symptoms vary in their intensity according to the patient's varying level of energy need and availability.  When caregivers express a concern, it is often useful for the primary physician to also observe the patient at that time to get an idea of what the caregiver is observing.  This sharing of impressions allows future correspondence by phone to be more effective and informative.  These occasions may also give the provider (or other office staff) the opportunity to teach caregivers how to become more effective and accurate reporters of symptoms.

Occasionally, primary care providers do not have the opportunity to observe symptoms such as fatigue.  Parents will sometimes say their child "holds it together" in school (or in public places) until they come home and then "fall apart."  In these situations, objective reporting can be very helpful.  This information need not come from health providers (physicians, therapists) but from anyone who has some perspective about how children usually behave (teachers, activity leaders); the question to ask is whether the patient stands out from the crowd in any way (usually in terms of energy level).  While it is certainly possible that mitochondrial patients can put on their best behavior and cover symptoms of fatigue or behavior, it is hard to fathom a situation in which symptoms can be "kept secret" indefinitely from all observers.

Page Security: