Meeting Challenges and Overcoming Obstacles

1. Lyme Disease in Children and Adolescents: Meeting Challenges and Overcoming Obstacles Sandy Berenbaum, LCSW, BCD Family Connections Center for Counseling Offices in Brewster, NY & Southbury, CT www.lymefamilies.com

2. LYME DISEASE AND CO-INFECTIONS A Challenging Illness for Patient, Physician and Family • Multi-system illness • Physical symptoms often including unremitting pain • Disturbance in sleep and alertness • Problems with cognition and executive functioning • Mood dysregulation, at times extreme • Co-conditions include thyroid and adrenal dysfunction Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

3. Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

4. Obtaining a complete, accurate diagnosis (Lyme disease, babesia, bartonella, ehrlichia, etc.) Finding a Lyme-literate medical practitioner who understands the disease process in children and adolescents Finding ancillary treatment to gain a further understand of the disease manifestations (neuropsychologist, psychiatrist, psychotherapist) Developing a supportive network, in or outside of the Lyme advocacy community Understanding needs related to obtaining an education, in the face of Lyme disease INITIAL CHALLENGESFor Patients with Undiagnosed TBDs Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

5. OBSTACLES PRIOR TO DIAGNOSIS • Misdiagnosis by Multiple Medical Practitioners • Misdiagnosis by Mental Health Practitioners • Ineffective and/or Inappropriate Treatments, including in-patient psychiatric hospitalization • Lack of support among family, friends and school staff, who do not believe the child is really ill • Blaming of parents for limited functioning of the child Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

6. MEDICAL AND MENTAL HEALTH MISDIAGNOSES • Migraine Headaches • Colitis / IBS • “Growing Pains” • Chronic Fatigue Syndrome • Fibromyalgia • Attention Deficit Disorder • Depression • Bipolar Disorder • Anxiety, Separation Anxiety, “School Phobia” • Somatization Disorder • Doctors will sometimes say: “I don’t know what it is, but it’s NOT Lyme!” Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

7. CRITERIA FOR DIAGNOSING MENTAL ILLNESS: Why Errors Occur with Lyme Patients Diagnosis is made using the DSM IV - Diagnostic and Statistical Manual of Mental Disorders (DSM V currently in development). • Someone with a medical illness with manifestations that meet the criteria in the DSM could be erroneously labeled as mentally ill, if the underlying medical illness is ignored or overlooked. • Important because treatment and insurance reimbursement are informed by diagnostic codes. Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

8. Treatments That Don’t Work When the Diagnosis is Not Accurate: • Anti-Inflammatory Drugs • Pain Medications (even Rx narcotics) • Steroids • Psychoactive Medications • Various Behavioral Therapies • IN-PATIENT PSYCHIATRIC HOSPITALIZATIONS Note: If the TBDs are being treated, the above classes of meds can provide appropriate ANCILLARY treatment, but the primary approach should be to treat the disease!! Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

9. INPATIENT PSYCHIATRIC TX For Children and Adolescents with Undiagnosed Lyme disease • Hospitalization is necessary when a patient is at-risk of harming himself or someone else. • Inpatient facilities, for the most part, do NOT understand Lyme disease and co-infections, particularly the psychiatric manifestations. • Inpatient programs have protocols that are geared toward improving the functioning of the mentally ill, not those with a medical illness. • Psychiatric Lyme symptoms do NOT constitute a mental illness, and should not be treated as such. • Inappropriate hospitalization for children with Lyme disease can be extremely traumatic, particularly if the hospitalization is for more than a few days. Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

10. Brain SPECT Changes after treatment with IV ceftriaxone for Lyme disease Before After (Adult female, misdiagnosed with atypical depression for 8 years; 51 drugs were ineffective in treating the “depression”) Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

11. Lyme Disease Diagnosed as Mental IllnessAccurate DSM Diagnoses, Supportive of the Medical Diagnosis Diagnoses that recognize and support Lyme and other tick-borne diseases as the primary diagnosis: • 293.83 Mood Disorder Due to a General Medical Condition (Lyme Disease, Babesiosis…) • 293.9 Mood Disorder NOS (not otherwise specified) (Lyme Disease, Babesiosis…) (cite the medical condition, and indicate it on Axis III as well) Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

12. 293.83 Mood Disorder Due to General Medical Condition • Prominent, persistent disturbance in mood predominates in the clinical picture and is characterized by either (or both) of the following:  • Depressed mood or markedly diminished interest or pleasure in all, or almost all, activities • Elevated, expansive, or irritable mood • Evidence from history, physical, or lab findings that the disturbance is the direct physiological consequence of a general medical condition.  Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

13. 293.9 Mental Disorder NOS • Disturbance caused by the direct physiological effects of a general medical condition • Criteria not met for a specific mental disorder • Include the name of the medical condition 293.9 Mental Disorder Not Otherwise Specified Due to Lyme Disease (or) 293.9 Mental Disorder Not Otherwise Specified Due to Lyme Disease and Babesiosis Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

14. CONTINUING OBSTACLES AFTER DIAGNOSIS, DURING TREATMENT • Persistent symptoms effecting daily functioning, diminishing ability to perform and succeed in school • Symptoms varying from day to day, or with medication changes, including J-H (Herxheimer) reaction • Isolation when the child has limited energy or ability to interact with peers, or when their peers don’t understand their illness • Uncertainty - not knowing when they will be well Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

15. Physical symptoms Impairments in Cognition and Executive Functioning Anxiety, depression, and other psychiatric manifestations Physical needs - extra breaks for water, food, medication and bathroom School environment Academic workload Length of school day Expectation of homework Physical Education requirements Lack of understanding of the disease by school staff EDUCATIONAL CHALLENGESDUE TO LYME Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

16. Stay problem-focused Careful discussions with child, regularly Appropriate expectations of child, including communications, respect and boundaries Appropriate expectations and boundaries with school Learn about the disease, education law issues and rights Learn advocacy skills; advocate for child’s needs Appropriate boundaries with others, including family Supportive network, in or out of Lyme community OVERCOMING OBSTACLES:Parent Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

17. OVERCOMING OBSTACLES: Child Increase self-awareness of symptoms, and what can be done to mitigate them (rest, sleep, activity, environmental modification) Increase self-awareness of academic strengths and limitations and be able to communicate that information Focus on areas of academic strengths, while ill Develop interests in areas the child can be successful while ill Strengthen peer relationships with those who understand - family members, friends, neighbors Stay away from judgmental peers Improve relationships and communications within the family and with extended family Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

18. “Courage is more exhilarating than fear… We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up… discovering we have the strength to stare it down.” Eleanor Roosevelt - You Learn by Living, 1960 Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

19. Websites www.ilads.org www.mentalhealthandillness.com www.thehumansideoflyme.net www.lymediseaseassociation.org www.timeforlyme.org www.lymedisease.org www.lymetimes.org www.unh-lyme.org www.lymefamilies.com (Sandy’s website) Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010

20. Sandy Berenbaum, LCSW Family Connections Center for Counseling P.O. Box 28 - Southbury, CT 06488 (203) 240-7787 www.lymefamilies.com Offices in Brewster, NY & Southbury, CT Sandy Berenbaum, LCSW, BCD - University of New Haven Symposium - May 8, 2010