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Behavioral issues

Mitochondrial disease is associated with a wide range of developmental challenges and behavioral concerns, including autism and attention deficit +/- hyperactivity. Patients are at risk for depressive and bipolar disease and panic disorders (Fattal, 2007), as well as anxiety. There are no specific disorders associated with defects in energy metabolism.

It is easy to understand why abnormal behaviors might develop given the medical, psychosocial and financial burdens of such a difficult chronic disease on the patient and family dynamic. Children, aware of their limitations, take note of what their peers are able to do. Achievement may come only with hard work and repetition, and skills might be lost during periods of systemic stress, all causing frustration. For children enrolled in school inclusion programs, disabilities may lead to isolation and a negative impact on self-esteem. It is prudent to anticipate that a child will develop frustration or sadness or anger in response to his/her diagnosis. These feelings need careful monitoring and a plan prepared to address concerns.

Correct identification of an underlying mental health issue is important for many reasons, but especially to fashion an appropriate management plan. However, it is essential to also regard the effects of such issues on the underlying mitochondrial disease. For example, significant anxiety problems or hyperactivity can impact directly on a patient's energy reserve such that valuable energy is wasted in non-productive behaviors. The effect of this energy loss is not insignificant; such problems should be addressed aggressively and may require a multi-pronged treatment approach.

Finally, it is important to determine whether or not the behavioral problem is a primary feature or a symptom that emerges when the patient is otherwise symptomatic (e.g., very fatigued). The out-of-control behavior a young child manifests when s/he is up beyond his/her bed-time is familiar; an adult may display a short temper following several days without adequate sleep. Similarly, when energy reserves run low, symptoms that a mitochondrial patient is able to keep under control under routine conditions might become unmasked. If fatigue is a chronic problem, this behavior may be present much of the time. When exhausted, patients might become less engaged or communicative, almost appearing autistic. Cognitive or academic achievements can be lost (usually temporarily).

Finally, any behavioral issues must be considered in the larger context of the family as a whole. The chronic, complex, and unpredictable nature of the diagnosis, coupled with a lack of disease awareness by medical and other professionals in the patient's life, and the ongoing financial challenges all impart a great measure of stress to the patient and the family. Support services and assistance programs may be available which could bring some relief but patient and families may be unaware of them or unfamiliar with how to access them. Case managers through some insurance programs or social workers or other community service providers may serve as helpful resources.

Mitochondrial Differential Diagnosis

1. Mitochondrial disease-based behavioral issues.

2. Behavioral issues as a reaction to the mitochondrial diagnosis.

3. Behavioral concerns unmasked as a result of significant fatigue.

Assessment

1. Determine what symptoms are associated with the behaviors of concern and whether or not there are any trigger factors (like fatigue or specific causes of anxiety like school).

2. Obtain feedback from parents, teachers, therapists, and other special education and activity leaders. For adult patients, this input can come from relatives, therapy or community workers, colleagues at work, or work representatives (when possible).

Recommendations

1. If fatigue is an issue - see FATIGUE.

2. Identify activities in which a child can be successful.

3. Encourage socializing opportunities with other children who have a similar developmental level and interests.

4. Develop a plan for addressing emotional concerns; resources can include teachers, therapists, and community service providers, in addition to members of the patient's medical team.

5. Consider referral to a psychiatrist. Evaluations should occur over two or more sessions in order to assess the patient under different situations.

References

Fattal O, Link J, Quinn K, et al. Psychiatric comorbidity in 36 adults with mitochondrial disease. CNS Spectrums 2007;12(6):429-38.

Lerman-Sagie T, Leshinsky-Silver E, Watemberg N, Lev D. Should autistic children be evaluated for mitochondrial disease? J Child Neurol 2004;19(5):379-81.

Natowicz M, Weissman J. Biochemical genetic conditions associated with autism: Lessons and challenges. In syllabus from Current Trends in Autism Conference, Dedham, MA (March 23-24, 2007). Ladders Clinic, Wellesley, MA.

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