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Mark Kozak, MD

• Associate Professor of Medicine
• Milton S. Hershey Medical Center
• Pennsylvania State University School of Medicine
• Hershey, Pennsylvania

Multi-disciplinary teams are often needed to provide comprehensive and coordinated clinical care impotence vitamins supplements purchase 20 mg levitra professional with amex. By taking an active For more information about role in care erectile dysfunction muse purchase genuine levitra professional on-line, you can help this process and make sure that potential creating your care team erectile dysfunction doctors jacksonville fl levitra professional 20 mg with amex, complications are detected and managed at the earliest stages erectile dysfunction 45 year old male levitra professional 20 mg generic. A more comprehensive list can be For help with fnding a found here: myotonic org/working-your-myotonic provider in your area, please dystrophy-care-team call 415-800-7777 or visit: myotonic org/ Your Understanding of your Disease fnd-a-doctor You may come into contact with providers throughout the medical system who may not know what myotonic dystrophy is nor how it afects you. They may ask you questions about yourself and your medical condition, so it is good to be prepared with what you will say to them. While there are many other questions that your medical team could ask you, think about how you would answer these questions as preparation for upcoming appointments. Inheritance patterns of genetic conditions, genetic counselling, Geneticist/Genetic Counselor family members at risk. Chronic respiratory problems, sleep apnea, frequent chest colds Pulmonologist that do not go away, aspiration pneumonia caused by swallowing issues. Blurry or dimmed vision (possible cataracts), eye muscle Ophthalmologist weakness, droopy eyelids (ptosis). Weight control, special diets, alternative feeding methods and Dietician/Nutritionist nutrition. Social Worker/Case Manager Social care needs, personal and respite care, social support. You will fnd a list of key terms and abbreviations in Questions about specialists: the Glossary All blue bolded words and phrases have Has a pulmonary doctor (a doctor who specializes in lungs) defnitions listed there. Talking to Healthcare Professionals You can play an active role in your health care by talking to your doctor. Clear and honest communication between you and your doctor can help you both make smart choices about your health. Have an open dialogue with your doctor; ask questions to make sure you understand your diagnosis, treatment, and recovery. The following tips can help you talk to your doctor and make the most of your appointments: Write down a list of questions and concerns before your appointment. Transitioning Towards Age-appropriate Care and Increasing Care Needs To ensure a smooth transition from pediatric to adult healthcare, parents and caregivers of juvenile-onset adults with myotonic dystrophy need to consider all care options in advance, including the best care model for their family member. Some clinics begin at age 12 to 14 to prepare for the change from a pediatric model of care, where parents make most decisions, to an adult model of care, where youth take full responsibility for decision-making. At that time, consent from the young adult will be required to discuss any personal health information with family members. If the young adult has a condition that prevents health care decision-making, then the parents/caregivers need to consider legal options that are required to become responsible for decision-making, such as conservatorship. Many fnancial supports and programs that are available to children are discontinued Consider keeping your at age 18 or 21, while some programs will switch from federal to state medical information organized funded. The clinic visit Your diagnosis: planner helps organize information for upcoming clinic visits and provides a place to write questions to share with providers. Call 211 or visit 211 org/ Your insurance company, to fnd your local Paratransit provider. If the person you are caring for is a young child, parent, or in my case my wife of almost 40 years, your time can become consumed by caregiving, even if that is not the intent. The role of caregiver took years of their lives compared to a match sample of non-caregivers. I present this study not to scare you, or discourage you from becoming a caregiver, but rather to impress on you to prepare yourself for the role, and never forget that you must care for yourself all along your caregiving journey. It is important to understand caregiving responsibilities and the varied tasks that a caregiver will encounter. The following is a list of possible physical (P) and mental (M) demands that can come with caregiving. If your loved one is sufering, they may rebuf you, act out with anger, present impatience, and worse. I spent many hours reminiscing with my wife about our early marriage and raising our children. I made a special efort to keep her updated on world events and family happenings, and indulged her hobbies, such as scrabble and crossword puzzles. We got it down to a routine and I had guidance from hospital experts in how to most keep my wife as safe as possible. Walking with the aid of a walker can help, but there is no substitute for an attentive caregiver (M). It was up to me to help her get up, even when she was emotionally upset and felt helpless on the foor. I had to calm and comfort her frst and then lift her onto a couch or hassock nearby. It minimized falling at night, but I had to get up in the middle of the night and sometimes lost sleep (P). About one half of all teens with myotonic dystrophy that I work with have these disabilities. Parents and caregivers often consult with educators, school psychologists, guidance counselors, speech therapists, and more (M). My son had learning disabilities and needed special tutors and special needs schools. Caregivers of school age children can learn A Guide to Understanding a lot from this toolkit about best ways to teach young people afected by Special Education the disease. If you can aford caregivers part-time or full-time, select your caregiver carefully. You can use my tasks above to start your list but make your own list to ft your unique situation. Once you have your list, decide if you will hire an agency or provide your own help. Ideally, a combination of both roles is needed to provide some relief from caregiving. No matter what strategy you take, start with pre-screening telephone interviews. This requires a resume, but do not make the assumption that someone with caregiving experience can do the work. In your pre-screening interviews, look for people who are willing to assume responsibility, show compassion for others, have a consistent work history, are willing to take initiative when the caregiving job requires it, and work in partnership with others. Telephone interviews can be short if it is apparent that the applicant is not a good ft for the position. Applicants may not present all of these factors but be careful about candidates that you believe are going to have difculty with any of these factors. Mature caregivers are not reactive; they consider circumstances when taking action, perform with a goal or purpose in mind, and consider what people around them need from them.

Another primary area in need of further research is the role Advances in technology have led to new objective methods of pharmacological agents erectile dysfunction 42 levitra professional 20 mg low cost, either alone or in combination with to assess sleep in young children erectile dysfunction what age levitra professional 20mg with amex. These relatively non-intrusive behavioral interventions erectile dysfunction drugs philippines purchase levitra professional with mastercard, in the treatment of sleep issues in young techniques erectile dysfunction shake recipe purchase 20 mg levitra professional amex. These agents are frequently prescribed by pediatricians Acebo126 for review) may provide clinicians an opportunity to and child psychiatrists26,129, however, there is limited research on objectively assess target symptoms or problems in addition to their efficacy, risks, benefits, and limitations. It has been suggested that inflated many new hypnotics and the potential risks associated with medi improvement effects could result from parental fatigue when par cations in young children, this research becomes even more cru ents are asked to document each night-waking on a daily basis for cial. Finally, research is needed to evaluate the efficacy of alterna extended periods. A combina found that two behavioral interventions for bedtime problems and tion of these measures is necessary to identify those children with night wakings in young children, specifically Unmodified Extinc clinically significant sleep problems. In addition, support is provided flicting results makes it difficult to assess the essential compo for graduated extinction, bedtime fading/positive routines, and nents needed for an effective intervention. An overwhelming majority of children could be answered by traditional outcome research (comparisons respond favorably to these behavioral techniques, resulting in between groups). Another approach is the use of process research not only better sleep, but also improvements in child and family to assess the contributions of specific elements of interventions well-being. The complementary role of process research has additional research is necessary and there are more questions to not been well recognized and implemented in the study of behav 127 be answered. It is essential that future studies use standardized re ioral interventions for sleep problems (see Shirk and Russell for search diagnostic criteria, include more objective measures, and a review of these methodological issues). Arch Dis Child 1987;62:253-257 Nighttime sleep-wake patterns and self-soothing from birth to one 25. Medication use in the Night waking, sleep-wake organization, and self-soothing in the treatment of pediatric insomnia: results of a survey of community first year of life. Archives of General Psychiatry 1970;23:226 of Pediatric Psychology 1999;24:465-481 232 6. Treatment efficacy in behavioral pediatric ders: Generalization across disorders and effects on family mem sleep medicine. Philadelphia: childhood: Continuities, predictive factors, and behavioral corre Lippincott Williams & Wilkins, 2003: lates. Persistence of view of treatments for settling problems and night waking in young sleep disturbances in preschool children. Predictors and long-term associations of reported sleep of Sleep Disorders, Reviseded). Journal of reproductive and infant psychol emy of Sleep Medicine, 1997: ogy 1992;10:151-168 33. Night waking at five years of age: Predictors and prog of Sleep Disorders, Second Edition (Second ed). Journal of Child Psychology and Psychiatry and Allied Disci American Academy of Sleep Medicine, 2005: plines 1994;35:699-708 34. Obstructive sleep apnea and the prefron 1981;56:491-493 tal cortex: towards a comprehensive model linking nocturnal upper 35. A behavioral model of infant sleep airway obstruction to daytime cognitive and behavioral deficits. Pediatrics 1992;90:554-560 terns of infants referred to a community-based infant mental health 37. Nat Neurosci 2000;3:1335 and aggressive behavior in a blind, retarded adolescent. Sleep, neurobehavioral func 2003;7:321-334 tioning, and behavior problems in school-age children. Reducing bedtime tantrums: Compari 107 son between positive routines and Graduated Extinction. Infant temperament, ioural infant sleep intervention to improve infant sleep and maternal sleep organization, and nighttime parental interventions. Owens-Stively, J, Frank, N, Smith, A, Hagino, O, Spirito, A, Ar infant sleep problems in a residential unit. Child temperament, parenting discipline 1994;20:89-100 style, and daytime behavior in childhood sleep disorders. Behavioral treatment of multiple 1994;5:311-322 childhood sleep disorders: Effects on child and family. The relative influence of child and environmental 1990;14:37-49 characteristics on sleep disturbances in the first and second years of 22. Owens, J, Spirito, A, Marcotte, A, McGuinn, M, and Berkelham written information approaches: A brief report. Neuropsychological and Behavioral Correlates of Obstruc chiatr 1989;30:913-918 tive Sleep Apnea Syndrome in Children: A Preliminary Study. Behaviour modification in the treatment of Breath 2000;4:67-78 sleep problems occurring in young children: A controlled trial using 47. Child Care, Health Dev 1988;14:355 evidence of behavioral and cognitive sequelae of obstructive sleep 367 apnea in children. J Sleep and adjustment in preschool children: sleep diary reports by Appl Behav Anal 1998;31:127-129 mothers relate to behavior reports by teachers. Outcomes of infant sleep prob warding Social Story to Reduce Bedtime Resistance and Frequent lems: A longitudinal study of sleep, behavior, and maternal well-be Night Waking. J Clin Child Psychol 1987;16:212-217 Cognitive function following acute sleep restriction in children ages 72. Sleep Medicine Reviews 2001;5:447-461 disorder and infant behaviour disturbance in an Australian private 52. Arch Women Ment Health and extension on school-age children: What a difference an hour 2004;7:89-93 makes. The regulation of sleep and arousal: Development and sleep disturbance by trimeprazine in combination with extinction. Behavior management of infant longitudinal study of developmental change and association with sleep disturbance. Arch-Pediatr-Adolesc-Med 1999;153:1027-1029 subsequent development of attention-deficit/hyperactivity disorder 77. Decreasing the al, aggressive, and antisocial behavior in children and adolescents. Rules of evidence and clinical recommendations for sleep disturbance by Graduated Extinction. Journal of the Amer Psychol 1999;27:5-16 ican Academy of Child and Adolescent psychiatry 1994;33:1114 63. Reducing nocturnal awakening and 1121 crying episodes in infants and young children: A comparison be 85. Pediatrics ment of common childhood bedtime problems by pediatric nurse 1988;81:203-212 practitioners. J Child Psychol Psychiatr eliminate nighttime crying by gradually increasing the criteria for 1990;31:551-567 ignoring crying. Intervention package for treating sleep disorders in a Use of a behavioural programme in the first 3 months to prevent four-year-old girl. Journal of Beh Ther and Experimental Psychiatry infant crying and sleeping problems. Are groups for parents of children with and Newsletter 1995;17:153-157 sleep problems effective

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All aspects of postvention strive to treat the loss in similar ways to that of other deaths within the school community and to return the school environment to its normal routine as soon as is possible erectile dysfunction natural remedies order discount levitra professional on line. Principal or Designee Verifies Death Verify details of death with police or other local authority (see Attachment 3 doctor for erectile dysfunction in hyderabad buy 20 mg levitra professional with visa. Principal or Designee Contacts Family (see Guidelines for Working With the Family impotence natural home remedies purchase generic levitra professional from india, attachment 3 erectile dysfunction after radiation treatment prostate cancer order levitra professional 20 mg without a prescription. If family is unwilling or not ready to share, help the family craft a message that they do want released in order to minimize rumors, misinformation, and speculation. Crisis Response Team Leader conducts the initial all-staff meeting with principal or designated administrator. Convey what information can be relayed to students For sample announcements, refer to Attachment 3. In order to deal with student reactions provide them with copies of: o Attachment 3. Provide staff support Inform teachers that roving substitute teachers are available for those instructors who may need a short break. Inform staff where to send at-risk students and that they must be sent with another student or escorted by adult -never alone 6. Identify designated locations on campus for students who would like to support one another with a trusted adult nearby. Determine who should monitor these stations (activities director, other mental health providers). Share parent location designated for parents who come to campus to ask questions and express concerns. Identify, monitor, and support students who may be at risk Recognize that students who were close to deceased and known vulnerable students may be at-risk for suicide. Designate someone to circulate on campus to determine who might be in need and to monitor for rumors. Meet with students in small groups including established groups of the deceased. Meeting should be facilitated by counselor, school psychologist, community counseling and grief support, etc. Inform staff as to the continued availability of roving substitute teachers and counselors. Determine this based upon expressed need and day one experiences in the classroom. Emphasize self-care for teachers/staff since they have been primarily focused on taking care of students. Reminder to continue to identify, monitor, and support students who may be at risk. In all cases, schools should have a consistent policy so that suicide deaths are handled in the same manner as any other deaths. Key Considerations for Memorialization Any memorial should have the goals of being life-affirming, raising awareness, and reducing stigma. Schools can do this by seeking opportunities to emphasize the connection between suicide and underlying brain conditions such as depression or anxiety that can cause substantial psychological pain but may not be apparent to others (or that may manifest as behavioral problems or substance abuse). Social media can be used effectively for the dissemination of accurate information and to promote suicide prevention efforts. Discuss with the family the importance of informing clergy or whoever will be conducting the funeral about the risk of suicide contagion among adolescents. Communicate the importance of emphasizing the connection between suicide and underlying brain conditions (such as depression), as noted in the key considerations for memorialization listed above. Encourage the family to consider holding the funeral outside of school hours if at all possible. If family asks, principal should communicate with the funeral director about logistics, including need for mental health professionals and/or grief counselors to be present at the funeral. Depending on family wishes, the Principal will disseminate information about the funeral to students, parents, and staff as soon as it becomes available. Consider having a trusted adult or family member accompany students who choose to attend the funeral to provide support. Minimize Risk of Suicide Contagion by Working with the Media For more information on Contagion See Attachment 3. A statement is prepared in advance and a hard copy provided by media spokesperson when contacted by outside organizations for comments or information regarding the death. Include Appendix B2, Mental Health Resources for local resources and hotline numbers iv. Schedule daily debriefs with Crisis Response Team while in initial assessment period to discuss 162 at-risk students who need follow-up and to review confidential database. Discuss with family of deceased student any concerns they may have for siblings, friends or acquaintances and follow up accordingly. Documents name of student, date/time of check-in, assessment of areas of concern, follow-up referrals and notifications on standardized forms (see Attachment 3. Send e-mail updates to staff to keep them informed about funeral arrangements; resources and supports available for them; physical, emotional, cognitive, and social manifestations of grief in students; referral process for students of concern, etc. Develop prearranged protocol for removing personal items from locker or desk, respecting family wishes for privacy and/or support. Team leader documents successes, challenges, and recommendations for improvement to be incorporated into the Comprehensive Suicide Prevention Toolkit. Identify students in need and refer to counselor (note alternative approaches to identifying students at risk in Section I: Promotion of Mental Health Wellness). Attendance office to alert health tech or counselor about increased student absences. Campus supervisor to rove on campus throughout the day and monitor the emotional climate. Continue to meet with students in small groups, especially those groups of which the deceased student was a member. Recommend more individual supports (make sure to offer continued support if needed). Acknowledgment of a student who has died by suicide should be consistent with acknowledgement of a student who has died by any other means. The probability of contagion is heightened on the anniversary of the death as well as on other meaningful days. Refer to and choose among the resources located in Appendix B for more information as needed. Principal or designee to remain in contact with family through the funeral and in the weeks following death. Provide parent/community education about suicide, grief, and self-care within the first month following death. They will often appreciate the support of the school community, and their cooperation can be valuable for effective postvention. The principal or a representative of the school should request to visit the family in their home. It may be useful for a pair of representatives to visit together so that they can support one another during the visit.

The need to diagnose and treat erectile dysfunction wellbutrin xl buy generic levitra professional pills, as well animal that has undergone temperament testing erectile dysfunction at age 23 order levitra professional amex, rigorous as the safety of the patient and practitioner erectile dysfunction after vasectomy order levitra professional cheap, should be training diabetic erectile dysfunction icd 9 code order levitra professional 20mg online, and certification. The animal, which is available considered before the use of nitrous oxide/oxygen analgesia/ for companionship during the dental visit, can help break anxiolysis. If nitrous oxide/oxygen inhalation is used in con communication barriers and enable the patient to establish a centrations greater than 50 percent or in combination with safe and comforting relationship, thereby reducing treatment other sedating medications. For each visit, the goals and results of the the likelihood for moderate or deep sedation increases. If a patient stabilization device is utilized, it Most children can be managed efectively using the techniques is considered passive restraint. Children, however, occasionally present with restraint) placed around the chest may restrict respirations. Because of the associated risks techniques commonly used and taught in advanced pediatric and possible consequences of use, the dentist is encouraged dental training programs include protective stabilization, to evaluate thoroughly their use on each patient and possible sedation, and general anesthesia. It is unclear if these behavior guidance techniques Partial or complete stabilization of the patient sometimes address factors that contribute to the initial dental fear and is necessary to protect the patient, practitioner, staf, or the anxiety. The dentist always be accepted by parents who may be more accepting of always should use the least restrictive, but safe and efective, pharmacologic behavior guidance. Risks, patient, practitioner, staf, and parent should be considered benefts, and alternatives should be discussed prior to obtaining prior to the use of protective stabilization. Furthermore, when a residency program, a graduate program, and/or an extensive appropriate, an explanation to the patient regarding the continuing education course that involves both didactic and need for restraint, with an opportunity for the patient to experiential mentored training. The need to diagnose and combined with dental procedures to reduce the number treat, as well as the safety of the patient, practitioner, and of anesthetic exposures; staf should be considered for the use of general anesthesia. Refusal of treatment, forceful crying, fearfulness, or any other overt evidence of extreme negativism. Reluctance to accept treatment, uncooperative, some evidence of negative attitude but not pro nounced (sullen, withdrawn). Good rapport with the dentist, interest in the dental procedures, laughter and enjoyment. Information sharing is most efective when it is sensitive to the emotional impact of the words used. Many conversations between clinicians and parents sound like Tell-Tell-Tell, a process known as doctor babble, because clinicians seem to talk to themselves, rather than have a conversation with parents or patients. If patients are upset or anxious, address their emotions and concerns before trying to share information. Some patients want detailed information about their conditions, tests, and proposed treatments; recommendations for reading; websites; self-help groups; and/or referrals to other consultants. Patients may want other family members to be present for support or to help them remember key points. Reaching agreement with the patient about what information to review may require negotiation if the clinician understands the issues, priorities, or goals differently than the patient. Also, some patients may need more time, and so it might be wise to discuss the key points and plan to address others later or refer them to other staf or health educators. Find out what previous knowledge or relevant experience patients have about a symptom or about a test or treatment. Patients will not be interested in hearing your health information if they are not motivated or if they have negative attitudes about the outcomes of their eforts, so ask about this directly. It is difficult to understand and retain large amounts of information, especially when one is physically ill, upset, or fearful. For example, name the problem, the next step, what to expect, and what the patient can do. Words and phrases a practitioner takes for granted may be misinter preted or alarm patients and families. This step closes the feedback loop with patients and helps the practitioner understand what patients hear, whether they are taking home the intended messages, and how they feel about the situation. Letting patients know their concerns and worries have been heard is compassionate, improves outcomes, and takes little time. Patients may face external obstacles as well as internal emotional responses that inhibit them from overcoming obstacles. This may be especially effective for patients with low literacy who cannot rely on written reminders. Motivational Interviewing Motivational interviewing facilitates behavior change by helping patients or parents explore and resolve their ambivalence about change. Motivational interviewing keeps the responsibility to change with the patient and/or parent, which helps to decrease staf burnout. In dentistry, it is useful in counseling about brushing, fossing, fuoride varnish, reducing sugar sweetened beverages, and smoking cessation. It is especially helpful in higher levels of resistance, anger, or entrenched patterns. Motivational interviewing is empowering to both staf and patients and, by design, is not adversarial or shaming. Challenges of managing child behavior in the during and after sedation for diagnostic and therapeutic 21st century dental setting.