Your Child's Brain

February is Rare Disease Month---a month-long focus on rare diseases, culminating on rare disease day, February 28th. Currently more than 7,000 rare diseases have been identified with a significant proportion of them involving the developing brain and nervous system. And the vast majority of rare diseases have a genetic basis. Coping with a rare disease is often aptly described as a journey. And along that journey, questions and concerns will come up at every stage of life. Where can a family member go for that information and support? Often, a genetic counselor is an excellent option, especially for those contending with a rare, genetic disorder. Listen to Dr. Bradley Schlaggar, president and CEO of Kennedy Kriger and his guests talk about the role that genetic counseling plays in supporting families struggling with a rare disorder.

Resources

Kennedy Krieger Genetic Counseling

National Society of Genetic Counselors

National Organization of Rare Diseases Understanding Rare Diseases

National Organization of Rare Diseases – Living with a Rare Disease

Many people are unfamiliar with what a neuropsychologist does or why a child might need to see one. However, a child who is experiencing challenges or changes in thinking, problem solving, communication, attention, memory, emotional/behavioral functioning, especially when those issues might be affecting school performance, may benefit from an evaluation by a neuropsychologist. In this episode of “Your Child’s Brain”, Kennedy Krieger President and CEO Dr. Brad Schlaggar, talks to two of his colleagues at Kennedy Krieger who, as co-directors, comprise the shared leadership team of our Center for Neuropsychological and Psychological Assessment Outpatient Clinics at Kennedy Krieger. They are also joined by a parent who’s daughter has benefitted from a neuropsychological exam to give a parent’s perspective.

Resources

A First Step – Understanding Rights for Your Child

American Academy of Clinical Neuropsychology

Epilepsy is one of the most common serious neurologic disorders seen in children and adults, in fact, 1 in 26 people will develop epilepsy during their lifetime. It can occur on its own or alongside other health conditions of the brain.

Despite it being relatively common, there are many myths, misunderstandings---as well as a great deal of stigma associated with epilepsy. Join Kennedy Krieger’s CEO Dr. Brad Schlaggar and his colleagues from the Institute and Johns Hopkins as they address those topics, as well as approaches to diagnosis and treatment, and what research holds in store for pediatric patients with epilepsy.

Resources Kennedy Krieger epilepsy resources https://www.kennedykrieger.org/epilepsy-services-at-kennedy-krieger-institute/epilepsy-resources

Epilepsy Foundation https://www.epilepsy.com/

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We humans, typically, have 23 pairs of chromosomes. Sometimes, for a variety of reasons, we have an extra chromosome or we are missing one. Down syndrome, also known as Trisomy 21, is a genetic disorder that occurs when an individual has a full or partial extra copy of their 21st chromosome. Down syndrome is the most frequent of the chromosomal disorders in humans, occurring in approximately 1 in 700 births in the US. With improved care of often life-threatening clinical challenges, individuals with Down syndrome are living much longer.

In this month’s podcast of Your Child’s Brain we are going to talk about Down Syndrome and especially focus on how the increased lifespan of those with Down syndrome is impacting treatment and research for people living with this diagnosis.

Resources

· Down Syndrome Association of Maryland (dsamd.org)

· National Down Syndrome Society (ndss.org)

· National Down Syndrome Congress (ndsccenter.org)

· Global Down Syndrome Foundation (https://www.globaldownsyndrome.org)

· LuMind IDSC Foundation (https://lumindidsc.org)

· NIH – research plan across the LifeSpan - Project INCLUDE for co-occurring medical conditions (www.nih.gov/include-project)

· Eunice Kennedy Shriver National Institute of Child Health and Human Development (nih.gov)

· National Task Group on Intellectual Disabilities and Dementia Practices - Intellectual Disabilities and Dementia Resources | The NTG (the-ntg.org)

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How does experience and one’s  environment influence the early development of our brains? We’ve known for a long time that  this question does not simply boil down to “Nature” vs “”nurture”, a false dichotomy. Instead, brain development might best be thought of as a cascading interaction between nature and nurture that unfolds over time. Twenty five years ago, the National Academy of Sciences published a landmark report called From Neurons to Neighborhoods which dove deep into this question. 

In this month’s episode of Your Child’s Brain, join Dr. Brad Schlaggar and his guests.as they reflect on this influential report and discuss how early experiences, environments and exposures influence the developing brain early experiences, environments and exposures influence the developing brain.

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In this episode of Your Child’s Brain, Dr. Brad Schlaggar is joined by his Kennedy Krieger colleague, Dr. Doris Leung, to discuss a set of diseases of muscle that we refer to collectively as muscular dystrophy (MD). Muscular dystrophy is actually a group of rare genetic diseases that cause progressive weakness and degeneration of muscles. Overall, the muscular dystrophies vary in age of onset, severity, and the pattern of the affected muscles. A general principle shared by all forms of MD is that they grow worse over time as muscles progressively degenerate, atrophy, and weaken.

For more information about muscular dystrophy, these resources might be helpful:

· Kennedy Krieger Center for Genetic Muscle Disorders https://www.kennedykrieger.org/patient-care/centers-and-programs/center-for-genetic-muscle-disorders

· Parent Project Muscular Dystrophy https://www.parentprojectmd.org/

·Myotonic Dystrophy Foundation https://www.myotonic.org/

· FSHD Society https://www.fshdsociety.org/

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Join Dr. Brad Schlaggar, president and CEO of Kennedy Krieger Institute and Dr. Lisa Carey, the Assistant Director of the Center for Innovation and Leadership in Special Education as well as an education specialist for the Neuropsychology Department at Kennedy Krieger. Accommodations for college require self-advocacy. It is the student themselves who must request those accommodations at the school—not the parents. Services such as occupational therapy, speech therapy, reading support, and instructional assistants, which may have been a part of a student’s IEP, are not a part of college accommodations.

Additionally, since many students live on a college campus, there may be additional accommodations to consider for housing, dining, and recreation. Listen as they dive into the process of requesting accommodations and the importance of working with the college’s Disability Support office. Families need to start preparing their child early for this change so that students have the self-advocacy skills to be successful in college.

Resources for students and families:

Understood.org has great resources for understanding disability services in higher education

Kennedy Krieger has a guide specifically for college students with a history of cancer.

The US Department of Education Office for Civil Rights offers a guide of student rights and responsibilities in postsecondary education.

Edutopia has a helpful blog post on this topic.

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In the United States alone, there are nearly 20 million children with developmental, cognitive, behavioral, and/or learning disorders. It is widely recognized that the needs of children with these issues are growing in number and complexity while, at the same time, a critical shortage of access to physician specialists is resulting in delayed diagnoses, longer wait times for treatment and, consequently, poorer outcomes.  On this month’s episode, Kennedy Krieger president and CEO, Dr. Brad Schlaggar is joined by colleagues Dr. Miya Asato, a pediatric neurologist and Dr. Mary Leppert, a developmental pediatrician to discuss the critical shortage and what is being done to address it and more importantly, what parents can do.

Resources:

Center for Disease Control – Concerned about Your Child’s Development https://www.cdc.gov/ncbddd/actearly/concerned.html

Learn the Signs – Act Early https://www.cdc.gov/ncbddd/actearly/index.html

Milestone Tracker App https://www.cdc.gov/ncbddd/actearly/milestones-app.html

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On this month’s episode, we are going to discuss Functional Neurological Disorders or FND.  Patients with this disorder are often stigmatized and, unfortunately, criticized for seemingly faking a disorder.  The reality is that the symptoms of functional neurological disorders are real, can cause significant morbidity, but, thankfully, can most often be remedied by prompt identification, education, and appropriate treatment. Kennedy Krieger president and CEO, Dr. Brad Schlaggar is joined by Dr. Souraya Torbey, a child and adolescent psychiatrist in the Center for Developmental Behavioral Health and the director of the FND Clinic at Kennedy Krieger and Dr. Caitlin Thompson is a staff clinical psychologist in the FND Clinic.  They are also joined by a parent of a child diagnosed with FND. Together the group will delve into FND and its impact not only on the individual but the entire family system.

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May is Children’s Mental Health Awareness month and as part of that recognition, join Dr. Brad Schlaggar, president and CEO of Kennedy Krieger and his guest Dr. Matt Edelstein, director of the Brief Treatment Clinic at the Institute, as they discuss challenging behaviors in children and how those behaviors can have a cascading impact at multiple levels of a family system.

For the child, such behaviors can impede social, emotional, and academic functioning. For caregivers, they can influence stress, mood, feelings of confidence, and even undermine a sense of parental competence. Aggressive behaviors can cause injury.

Finally, for the family as a whole, challenging behaviors can tax relationships and have negative repercussions both within and beyond the walls of the household.

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