Pediatric Patient Resources: Difference between revisions
Leana Louw (talk | contribs) No edit summary |
Leana Louw (talk | contribs) No edit summary |
||
Line 36: | Line 36: | ||
** Search their [http://globalgenes.org/rarefacts/ RARE facts] | ** Search their [http://globalgenes.org/rarefacts/ RARE facts] | ||
== Autism Spectrum Disorder and Autism<ref name="Autism Speaks">Autism Speaks. It's Time to Listen. | == Autism Spectrum Disorder and Autism<ref name="Autism Speaks">Autism Speaks. It's Time to Listen. Available from:http://www.autismspeaks.org/ (accessed 27/06/2013).</ref> [[Image:Autism ribbon.png|120x132px]] == | ||
=== '''Definition''' === | === '''Definition''' === | ||
Line 59: | Line 59: | ||
** Maternal illness during pregnancy | ** Maternal illness during pregnancy | ||
** Difficulties during birth (i.e. Oxygen deprivation) | ** Difficulties during birth (i.e. Oxygen deprivation) | ||
* Genetic risk factors (Autism tends to happen more frequently in the following conditions)<ref name="Autism Society">Autism Society. Improving the Lives of All Affected by Autism. | * Genetic risk factors (Autism tends to happen more frequently in the following conditions)<ref name="Autism Society">Autism Society. Improving the Lives of All Affected by Autism. Available from: http://www.autism-society.org/ (Accessed 27/06/2013).</ref> | ||
** Fragile X Syndrome | ** Fragile X Syndrome | ||
** Tuberous sclerosis | ** Tuberous sclerosis | ||
Line 83: | Line 83: | ||
=== '''Resources''' === | === '''Resources''' === | ||
'''Kentucky Autism Training Center''' | |||
* [http://katcproviders.louisville.edu/ Find specific services by region or county] | |||
* Examples of services include: hippo therapy, social skills group, community living supports and day care | |||
'''Autism Society of Kentuckiana''' | |||
* Become a member | |||
* [http://www.ask-lou.org/ Find resources, learn about news and events] | |||
* Offers an autism dad’s group | |||
'''[https://www.autismspeaks.org/ Autism Speaks]''' | |||
* Has information on current news and research, family services and events around the United States | |||
* There is also a blog available; as well as ideas for autism apps<br> | |||
'''National Institute of Neurological Disorders and Stroke''' | |||
* [http://www.ninds.nih.gov/disorders/autism/detail_autism.htm Fact sheet] on ASD and Autism | |||
'''Autism Research Institute'''<br> o Find out about current research<br> o http://www.autism.com/ | |||
'''[http://www.autism-society.org/ Autism Society]''' | |||
* Has news, research and ways to get involved | |||
* Section about living with Autism | |||
== Cerebral Palsy (CP) [[Image:Cerebral-palsy-awareness-ribbon.jpg.png|120x132px]] == | == Cerebral Palsy (CP) [[Image:Cerebral-palsy-awareness-ribbon.jpg.png|120x132px]] == | ||
=== '''Definition''' === | === '''Definition''' === | ||
Disorder of movement, muscle tone or posture that is caused by injury or abnormal development in the immature brain.<ref name="Mayo">Mayo Clinic. Cerebral Palsy. | Disorder of movement, muscle tone or posture that is caused by injury or abnormal development in the immature brain.<ref name="Mayo">Mayo Clinic. Cerebral Palsy. Available from:http://www.mayoclinic.com/health/cerebral-palsy/DS00302/DSECTION=complications (accessed 30/06/2013).</ref> | ||
=== '''How common is CP? <ref name="American Prego">American Pregnancy Association: Promoting Pregnancy Wellness. Cerebral Palsy. United Cerebral Palsy. http://americanpregnancy.org/birthdefects/cerebralpalsy.htm | === '''How common is CP? <ref name="American Prego">American Pregnancy Association: Promoting Pregnancy Wellness. Cerebral Palsy. United Cerebral Palsy. Available from:http://americanpregnancy.org/birthdefects/cerebralpalsy.htm (accessed 30/06/2013).</ref>''' === | ||
* Usually not diagnosed until the age of 2 or 3 | * Usually not diagnosed until the age of 2 or 3 | ||
* ~2-3:1,000 children over the age of three have the condition | * ~2-3:1,000 children over the age of three have the condition | ||
Line 208: | Line 207: | ||
=== '''Resources''' === | === '''Resources''' === | ||
'''[http://cerebralpalsy.org/ MyChild™]:''' | |||
* Their mission: “to provide you with the most comprehensive resource and compassionate voice for all things related to caring for a child with cerebral palsy, and other neurological conditions. We strive, everyday, to be your ULTIMATE Resource for EVERYTHING Cerebral Palsy.”<br> | |||
'''[http://cerebralpalsyresources.com/kentucky Cerebral Palsy Resources]'''<br> | |||
== <ref name="NDSS">National Down Syndrome Society. Down Syndrome. National Down Syndrome Society. http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/. Published 2012. Accessed June 24, 2013.</ref> <ref name="NDSS">National Down Syndrome Society. Down Syndrome. | '''[http://www.mattinglycenter.org/aboutus.html Mattingly Center, Inc.]''' | ||
* Cerebral Palsy School of Louisville, Inc. | |||
* Their mission “To provide the highest quality of structured day services for adults with severe developmental disabilities.” | |||
== <ref name="NDSS">National Down Syndrome Society. Down Syndrome. National Down Syndrome Society. http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/. Published 2012. Accessed June 24, 2013.</ref> <ref name="NDSS">National Down Syndrome Society. Down Syndrome. Available from: http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/ (accessed 24/06/2013).</ref> [[Image:Down.syndrome.ribbon.magnet.jpg|120x132px]] == | |||
=== '''Definition''' === | === '''Definition''' === | ||
Line 274: | Line 271: | ||
=== '''Resources''' === | === '''Resources''' === | ||
'''[http://www.downsyndromeoflouisville.org/ Down Syndrome of Louisville]''' | |||
* Lifelong learning center for individuals with Down Syndrome | |||
* National Down Syndrome Society | * National Down Syndrome Society | ||
** Information about Down Syndrome | ** Information about Down Syndrome | ||
Line 283: | Line 281: | ||
*** Research | *** Research | ||
*** And more!<br> | *** And more!<br> | ||
'''National Association for Down Syndrome''' | |||
* Programs | |||
* [http://www.nads.org/pages_new/resources.html Resources] and information<br> | |||
'''Real Life Down Syndrome''' | |||
* Blog spot | * Blog spot | ||
* Gives insight on how to raise a child with DS | * Gives insight on how to raise a child with DS | ||
* [http://reallifedownsyndrome-resources.blogspot.com/ Search resources by state]<br> | * [http://reallifedownsyndrome-resources.blogspot.com/ Search resources by state]<br> | ||
'''[http://dbhdid.ky.gov/dbh/files/oflsecb.pdf Kentucky Parent Support Groups]''' | |||
* Lists support groups by county | |||
== Activities and Equipment Sites for the Pediatric Population == | == Activities and Equipment Sites for the Pediatric Population == | ||
<div class="researchbox">Below are websites for you to look around for fun activities to enjoy outside of therapy sessions | <div class="researchbox">Below are websites for you to look around for fun activities to enjoy outside of therapy sessions: | ||
*'''[http://pinterest.com/pediastaff/ PediaStaff]''' | *'''[http://pinterest.com/pediastaff/ PediaStaff]''' | ||
*[http://pinterest.com/ytherapysource/ '''Your Therapy Source'''] | *[http://pinterest.com/ytherapysource/ '''Your Therapy Source'''] | ||
*[http://pinterest.com/motorsmartkids/ '''Starfish Therapies'''] | *[http://pinterest.com/motorsmartkids/ '''Starfish Therapies'''] | ||
<br> Below is a list of equipment sites for you to look around | <br> Below is a list of equipment sites for you to look around: | ||
*'''[http://equipmentshop.com/ Equipment Shop]''' | *'''[http://equipmentshop.com/ Equipment Shop]''' |
Revision as of 21:01, 4 March 2019
Original Editor - Alicia Dupilka
Top Contributors - Alicia Dupilka, Elaine Lonnemann, Kim Jackson, Leana Louw, WikiSysop, Admin and Scott Buxton
Resources for Physical Therapists and the Families of the Pediatric Population[edit | edit source]
This section is dedicated to the rare conditions diagnosed in the pediatric population.
Kosair Childrens Hospital
- Look into conditions and services
- Find a doctor
- See current news
- Visit their health library
Pediatric Leukemias
- The Children’s Hospital of Philadelphia
- In depth resource of pediatric leukemias
Pediatric Rheumatology
Multiple Sclerosis Foundation
- Insight on pediatric MS
- Coping with MS
Failure to Thrive
- Clinical key by Elsevier
- In depth overview of diagnosis
National Organization for Rare Diseases
- Search the rare disease database and download the free report
The Global Genes Project
- Learn what they are about
- Get involved
- Resources available:
- Search their RARE list
- Search their RARE facts
Autism Spectrum Disorder and Autism[1] [edit | edit source]
Definition[edit | edit source]
Group of complex disorders of the brain. Varying degrees of characteristics including: difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.
- Autism Spectrum Disorder (ASD): can display with intellectual disabilities, difficulties in coordination and attention and physical health issues.
- Autism: most obvious signs and symptoms tend to emerge between 2 and 3 years old
How common is Autism and ASD? [edit | edit source]
- ASD: Affects over 2 million individuals in the United States
- Autism:
- Effects ~1:88 children
- ~4-5 more times likely in boys than girls
- An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed in the United States
Causes[edit | edit source]
- No one cause
- Rare gene changes Most cases are a combination of gene changes and environmental factor
- Risk factors (do not cause autism by themselves, but could have an influence when combined with genetic risk factors):
- Clearest evidence involve events before and during birth
- Advance age at conception
- Maternal illness during pregnancy
- Difficulties during birth (i.e. Oxygen deprivation)
- Genetic risk factors (Autism tends to happen more frequently in the following conditions)[2]
- Fragile X Syndrome
- Tuberous sclerosis
- Congenital rubella syndrome
- Untreated phenylketonuria (PKU)
How is ASD/Autism diagnosed?[edit | edit source]
- No specific medical test
- Administer autism-specific behavioral evaluations
- Parents usually notice:
- Failure to make eye contact
- Not responding to their name
- Playing with toys in unusual or repetitive ways
- Other signs
- The Modified Checklist of Autism in Toddlers:
- List of informative questions about child
- Answers can indicate whether further evaluation by a specialist is needed
- Typical diagnosis involves a multidisciplinary team
- Genetic testing may be recommended
Resources[edit | edit source]
Kentucky Autism Training Center
- Find specific services by region or county
- Examples of services include: hippo therapy, social skills group, community living supports and day care
Autism Society of Kentuckiana
- Become a member
- Find resources, learn about news and events
- Offers an autism dad’s group
- Has information on current news and research, family services and events around the United States
- There is also a blog available; as well as ideas for autism apps
National Institute of Neurological Disorders and Stroke
- Fact sheet on ASD and Autism
Autism Research Institute
o Find out about current research
o http://www.autism.com/
- Has news, research and ways to get involved
- Section about living with Autism
Cerebral Palsy (CP) [edit | edit source]
Definition[edit | edit source]
Disorder of movement, muscle tone or posture that is caused by injury or abnormal development in the immature brain.[3]
How common is CP? [4][edit | edit source]
- Usually not diagnosed until the age of 2 or 3
- ~2-3:1,000 children over the age of three have the condition
- ~500,000 children and adults have CP in the United States
Types[4] [edit | edit source]
- Spastic:
- ~70-80% of cases
- Associated with stiff muscles, making movement difficult
- Spastic diplegia:
- Both legs are affected
- Causes tight muscles in the hips and legs
- Inward turned legs leading to crossed knees (scissoring)
- Spastic hemiplegia:
- One side of the body affected
- Arm often more affected than the leg
- Spastic hemiplegia:
- Spastic quadriplegia:
- Most severe
- All four limbs and the trunk are affected
- Often also affect muscle of tongue and mouth
- Spastic quadriplegia:
- Athetoid or Dyskinetic:
- 10-20% of cases
- Affects entire body
- Fluctuations in muscle tone
- Uncontrolled movements
- Difficulty with:
- Learning to control body
- Sucking
- Swallowing
- Speech
- Ataxic
Causes[3][edit | edit source]
- Abnormality or disruption in brain development
- Random mutations in genes
- Infections of the mother that would affect the developing baby
- Disruption of blood supply to the developing brain
- Lack of oxygen to the baby’s brain
- Infant infections leading to inflammation around the brain
- Traumatic head injury
Risk factors[3][edit | edit source]
- Mother’s health:
- Certain infections or health problems significantly increase the chance to giving birth to a baby with CP:
- Rubella
- Syphilis
- Chickenpox
- Other conditions
- Certain infections or health problems significantly increase the chance to giving birth to a baby with CP:
- Infant’s health:
- Certain illnesses in a newborn significantly increase the chance of the baby developing CP:
- Bacterial meningitis
- Severe or untreated jaundice (yellowing of the skin)
- Viral encephalitis
- Certain illnesses in a newborn significantly increase the chance of the baby developing CP:
- Other factors:
- Premature birth
- Low birth weight
- Breech births
- Multiple babies
How is CP diagnosed?[3][edit | edit source]
- Signs and symptoms usually appear during infancy or preschool years:
- Impaired movement associated with:
- Exaggerated reflexes or rigidity of the limbs and trunk
- Abnormal posture
- Involuntary movements
- Unsteadiness of walking
- Combination of these
- Other signs and symptoms
- Impaired movement associated with:
- Brain scans:
- MRI: usually the preferred test to use, will usually be given a mild sedative to remain still
- Cranial ultrasound: can provide a preliminary assessment, placed over the soft spot (fontanel) of the baby’s head
- CT scan: will likely be given a mild sedative to remain still
- Electroencephalogram (EEG):
- Done if the child has a history of seizures
- Records the electrical activity of the brain
- Used to determine if child has epilepsy
- Lab tests:
- Blood is checked to rule out other conditions
- May also screen for metabolic or genetic problems
- Additional tests:
- If diagnosed with CP, may go through these other tests to screen for other associated conditions:
- Vision impairment
- Hearing impairment
- Speech delays or impairments
- Intellectual disabilities or mental retardation
- Other developmental delays
- If diagnosed with CP, may go through these other tests to screen for other associated conditions:
Resources[edit | edit source]
- Their mission: “to provide you with the most comprehensive resource and compassionate voice for all things related to caring for a child with cerebral palsy, and other neurological conditions. We strive, everyday, to be your ULTIMATE Resource for EVERYTHING Cerebral Palsy.”
- Cerebral Palsy School of Louisville, Inc.
- Their mission “To provide the highest quality of structured day services for adults with severe developmental disabilities.”
[5] [5] [edit | edit source]
Definition[edit | edit source]
Genetic disorder occurring when the individual has full or a partial copy of chromosome 21. This extra genetic material causes an alteration in the development of the child.
How common is Down's Syndrome?[edit | edit source]
- Most common genetic disorder
- ~1:691 babies are born each year with Down’s Syndrome
- ~6,000 babies are born each year with Down’s Syndrome
Types[edit | edit source]
- Trisomy 21 (Nondisjunction):
- The pair of the 21st chromosome fails to separate
- Extra chromosome is replicated in every cell in the body
- Accounts for ~95% of cases
- Mosaicism:
- Nondisjunction takes place in chromosome 21 in one cell but not all cells
- Accounts for ~1% of cases
- May have fewer characteristics than other types of Down’s Syndrome
- Mosaicism:
- Translocation:
- Part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14
- Accounts for ~4% of cases
- Translocation:
Causes[edit | edit source]
- Cause of non-disjunction is currently unknown:
- Research suggests the likelihood increases as women age
- No definitive research suggesting environmental factors of the parents before or during pregnancy
- Note: Age 34 is not accurate. NDSS has noted the error but has yet to find out the correct information.
How is Down’s Syndrome Diagnosed? [edit | edit source]
Prenatally
- Screening tests:
- Most only provide a probability
- Blood test: measures quantities of various substances in the mother’s blood
- Ultrasound: checks for “markers”
- Diagnostic tests:
- Can provide a definite diagnosis with almost 100% accuracy
- Carry up to a 1% risk of causing a spontaneous termination
- Chorionic villus sampling (CVS): usually performed in first trimester between 9 and 11 weeks
- Amniocentesis: usually performed in the second trimester after 15 weeks
- Diagnostic tests:
At birth
- Usually identified by certain physical traits:
- Low muscle tone
- Single deep crease across the palm of the hand
- Slightly flattened facial profile
- Upward slant to the eyes
- Chromosomal analysis may also need to be done to confirm the diagnosis:
- This is done by drawing a sample of the baby’s blood
Resources[edit | edit source]
- Lifelong learning center for individuals with Down Syndrome
- National Down Syndrome Society
- Information about Down Syndrome
- Lists resources including:
- Publications
- Managing behavior
- Research
- And more!
National Association for Down Syndrome
- Programs
- Resources and information
Real Life Down Syndrome
- Blog spot
- Gives insight on how to raise a child with DS
- Search resources by state
Kentucky Parent Support Groups
- Lists support groups by county
Activities and Equipment Sites for the Pediatric Population[edit | edit source]
Below is a list of equipment sites for you to look around:
References[edit | edit source]
- ↑ Autism Speaks. It's Time to Listen. Available from:http://www.autismspeaks.org/ (accessed 27/06/2013).
- ↑ Autism Society. Improving the Lives of All Affected by Autism. Available from: http://www.autism-society.org/ (Accessed 27/06/2013).
- ↑ 3.0 3.1 3.2 3.3 Mayo Clinic. Cerebral Palsy. Available from:http://www.mayoclinic.com/health/cerebral-palsy/DS00302/DSECTION=complications (accessed 30/06/2013).
- ↑ 4.0 4.1 American Pregnancy Association: Promoting Pregnancy Wellness. Cerebral Palsy. United Cerebral Palsy. Available from:http://americanpregnancy.org/birthdefects/cerebralpalsy.htm (accessed 30/06/2013).
- ↑ 5.0 5.1 National Down Syndrome Society. Down Syndrome. National Down Syndrome Society. http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/. Published 2012. Accessed June 24, 2013. Cite error: Invalid
<ref>
tag; name "NDSS" defined multiple times with different content