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/

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 <a href="https://www.kennedykrieger.org/patient-care/centers-and-programs/center-for-genetic-muscle-disorders">https://www.kennedykrieger.org/patient-care/centers-and-programs/center-for-genetic-muscle-disorders </a>
· Parent Project Muscular Dystrophy <a href="https://www.parentprojectmd.org/">https://www.parentprojectmd.org/ </a>
·Myotonic Dystrophy Foundation <a href="https://www.myotonic.org/">https://www.myotonic.org/</a>
· FSHD Society <a href="https://www.fshdsociety.org/">https://www.fshdsociety.org/</a>

Each month Your Child’s Brain will bring together experts in child brain health, including researchers, educators, physicians and therapists as well as families to discuss contemporary topics about child and youth brain health and development.

Your Child's Brain is produced by Kennedy Krieger Institute with assistance from WYPR.

Each month&nbsp;Your Child&rsquo;s Brain&nbsp;will bring together experts in child brain health, including researchers, educators, physicians and therapists as well as families to discuss contemporary topics about child and youth brain health and development.
Your Child's Brain is produced by Kennedy Krieger Institute with assistance from WYPR.

Your Child's Brain

Each month Your Child’s Brain will bring together experts in child brain health, including researchers, educators, physicians and therapists as well as families to discuss contemporary topics about child and youth brain health and development.
Your Child's Brain is produced by Kennedy Krieger Institute with assistance from WYPR.

Muscular Dystrophy

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.

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:
<a href="https://www.understood.org/en/articles/7-things-to-know-about-college-disability-services">Understood.org has great resources for understanding disability services in higher education</a>
<a href="https://www.kennedykrieger.org/sites/default/files/library/documents/training/center-for-innovation-and-leadership-in-special-education/Higher%20Ed%20Accommodations%20after%20Cancer.pdf">Kennedy Krieger has a guide specifically for college students with a history of cancer.</a>
<a href="https://www2.ed.gov/about/offices/list/ocr/transition.html">The US Department of Education Office for Civil Rights offers a guide of student rights and responsibilities in postsecondary education.</a>
<a href="https://www.edutopia.org/article/preparing-students-disabilities-college/">Edutopia has a helpful blog post on this topic.</a>

Disability Services in College

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

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 <a href="https://www.cdc.gov/ncbddd/actearly/concerned.html" data-auth="NotApplicable" data-linkindex="0" data-ogsc="">https://www.cdc.gov/ncbddd/actearly/concerned.html</a>
Learn the Signs – Act Early <a href="https://www.cdc.gov/ncbddd/actearly/index.html" data-auth="NotApplicable" data-linkindex="1" data-ogsc="">https://www.cdc.gov/ncbddd/actearly/index.html</a>
Milestone Tracker App <a href="https://www.cdc.gov/ncbddd/actearly/milestones-app.html" data-auth="NotApplicable" data-linkindex="2" data-ogsc="">https://www.cdc.gov/ncbddd/actearly/milestones-app.html</a>

The Impact of a Physician Shortage on Children

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.

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.

Muscular Dystrophy

In 1 playlist(s)

Your Child's Brain

Social links

Follow podcast

Recent clips