2013-06-30

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= Resources for Physiotherapists and the Families of
their
Pediatric
Clients
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= Resources for Physiotherapists and the Families of
the
Pediatric
Population
<br>  =

 

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This section is dedicated to the rare conditions diagnosed in the pediatric population.

 

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'''Kosair Childrens Hospital'''<br>&nbsp;&nbsp;&nbsp;&nbsp; • Look into conditions and services<br>&nbsp;&nbsp;&nbsp;&nbsp; • Find a doctor<br>&nbsp;&nbsp;&nbsp;&nbsp; • See current news<br>&nbsp;&nbsp;&nbsp;&nbsp; • Visit their health library<br>&nbsp;&nbsp;&nbsp;&nbsp; • [http://www.kosairchildrens.com/ http://www.kosairchildrens.com/]

 

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<br> '''Pediatric Leukemias'''<br>&nbsp;&nbsp;&nbsp;&nbsp; • The Children’s Hospital of Philadelphia<br>&nbsp;&nbsp;&nbsp;&nbsp; • In depth resource of pediatric leukemias<br>&nbsp;&nbsp;&nbsp;&nbsp; • [http://www.chop.edu/service/oncology/cancers-explained/leukemia-diagnosis-and-treatment.html http://www.chop.edu/service/oncology/cancers-explained/leukemia-diagnosis-and-treatment.html]

 

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<br> '''Pediatric Rheumatology'''<br>&nbsp;&nbsp;&nbsp;&nbsp; • Review of childhood sarcoidosis <br>&nbsp;&nbsp;&nbsp;&nbsp; • [http://www.ped-rheum.com/content/6/1/16 http://www.ped-rheum.com/content/6/1/16]

 

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<br> '''Multiple Sclerosis Foundation'''<br>&nbsp;&nbsp;&nbsp;&nbsp; • Insight on pediatric MS<br>&nbsp;&nbsp;&nbsp;&nbsp; • Coping with MS<br>&nbsp;&nbsp;&nbsp;&nbsp; • [http://www.msfocus.org/article-details.aspx?articleID=374 http://www.msfocus.org/article-details.aspx?articleID=374]

 

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<br> '''Failure to Thrive'''<br>&nbsp;&nbsp;&nbsp;&nbsp; • Clinical key by Elsevier <br>&nbsp;&nbsp;&nbsp;&nbsp; • In depth overview of diagnosis<br>&nbsp;&nbsp;&nbsp;&nbsp; • [https://www.clinicalkey.com/topics/pediatrics/failure-to-thrive.html https://www.clinicalkey.com/topics/pediatrics/failure-to-thrive.html]

 

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'''National Organization for Rare Diseases'''<br>&nbsp;&nbsp;&nbsp;&nbsp; • Search the rare disease database and download the free report<br>&nbsp;&nbsp;&nbsp;&nbsp; • [http://www.rarediseases.org/rare-disease-information/rare-diseases http://www.rarediseases.org/rare-disease-information/rare-diseases]

 

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<br> '''The Global Genes Project'''<br>&nbsp;&nbsp;&nbsp;&nbsp; • Learn what they are about<br>&nbsp;&nbsp;&nbsp;&nbsp; • Get involved<br>&nbsp;&nbsp;&nbsp;&nbsp; • Resources available <br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Search their RARE list at [http://globalgenes.org/rarelist/ http://globalgenes.org/rarelist/] <br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Search their RARE facts at [http://globalgenes.org/rarefacts/ http://globalgenes.org/rarefacts/ ]<br>&nbsp;&nbsp;&nbsp;&nbsp; • [http://globalgenes.org/ http://globalgenes.org/ ]<br><br>

== Autism Spectrum Disorder and Autism<ref name="Autism Speaks">Autism Speaks. It's Time to Listen. Autism Speaks. http://www.autismspeaks.org/. Accessed June 27, 2013.</ref>&nbsp;[[Image:Autism ribbon.png|120x132px]]  ==

== Autism Spectrum Disorder and Autism<ref name="Autism Speaks">Autism Speaks. It's Time to Listen. Autism Speaks. http://www.autismspeaks.org/. Accessed June 27, 2013.</ref>&nbsp;[[Image:Autism ribbon.png|120x132px]]  ==

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'''How is ASD/Autism diagnosed?'''<br>&nbsp;&nbsp;&nbsp;&nbsp; • No specific medical test<br>&nbsp;&nbsp;&nbsp;&nbsp; • Administer autism-specific behavioral evaluations<br>&nbsp;&nbsp;&nbsp;&nbsp; • Parents usually notice:<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Failure to make eye contact<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Not responding to their name<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Playing with toys in unusual or repetitive ways<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Other signs visit [http://www.autismspeaks.org/what-autism/learn-signs http://www.autismspeaks.org/what-autism/learn-signs]<br>&nbsp;&nbsp;&nbsp;&nbsp; • The Modified Checklist of Autism in Toddlers<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o List of informative questions about child<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Answers can indicate whether further evaluation by a specialist is needed

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'''How is ASD/Autism diagnosed?'''<br>&nbsp;&nbsp;&nbsp;&nbsp; • No specific medical test<br>&nbsp;&nbsp;&nbsp;&nbsp; • Administer autism-specific behavioral evaluations<br>&nbsp;&nbsp;&nbsp;&nbsp; • Parents usually notice:<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Failure to make eye contact<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Not responding to their name<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Playing with toys in unusual or repetitive ways<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Other signs visit [http://www.autismspeaks.org/what-autism/learn-signs http://www.autismspeaks.org/what-autism/learn-signs]<br>&nbsp;&nbsp;&nbsp;&nbsp; • The Modified Checklist of Autism in Toddlers<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o List of informative questions about child<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Answers can indicate whether further evaluation by a specialist is needed  

&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; &nbsp;&nbsp; &nbsp; [[Image:Eac-block.jpg]]<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Utilize this screening tool at [http://www.autismspeaks.org/what-autism/diagnosis/screen-your-child www.autismspeaks.org/what-autism/diagnosis/screen-your-child]<br>&nbsp;&nbsp;&nbsp;&nbsp; • Typical diagnosis involves a multidisciplinary team<br>&nbsp;&nbsp;&nbsp;&nbsp; • Genetic testing may be recommended <br>  

&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; &nbsp;&nbsp; &nbsp; [[Image:Eac-block.jpg]]<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Utilize this screening tool at [http://www.autismspeaks.org/what-autism/diagnosis/screen-your-child www.autismspeaks.org/what-autism/diagnosis/screen-your-child]<br>&nbsp;&nbsp;&nbsp;&nbsp; • Typical diagnosis involves a multidisciplinary team<br>&nbsp;&nbsp;&nbsp;&nbsp; • Genetic testing may be recommended <br>  

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== Cerebral Palsy (CP)&nbsp;[[Image:Cerebral-palsy-awareness-ribbon.jpg.png|120x132px]]  ==

== Cerebral Palsy (CP)&nbsp;[[Image:Cerebral-palsy-awareness-ribbon.jpg.png|120x132px]]  ==

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== Down Syndrome <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>&nbsp;&nbsp;[[Image:Down.syndrome.ribbon.magnet.jpg|120x132px]]  ==

== Down Syndrome <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>&nbsp;&nbsp;[[Image:Down.syndrome.ribbon.magnet.jpg|120x132px]]  ==

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<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Usually identified by certain physical traits<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Low muscle tone<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Single deep crease across the palm of the hand<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Slightly flattened facial profile <br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Upward slant to the eyes  

<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Usually identified by certain physical traits<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Low muscle tone<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Single deep crease across the palm of the hand<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Slightly flattened facial profile <br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Upward slant to the eyes  

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<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Chromosomal analysis may also need to be done to confirm the diagnosis <br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  This is done by drawing a sample of the baby’s blood <br>

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<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Chromosomal analysis may also need to be done to confirm the diagnosis <br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  This is done by drawing a sample of the baby’s blood <br>  

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'''Resources'''<br>&nbsp;  

'''Resources'''<br>&nbsp;  

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&nbsp;&nbsp;&nbsp;&nbsp; • '''Down Syndrome of Louisville'''<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Lifelong learning center for individuals with DS<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o [http://www.downsyndromeoflouisville.org/ http://www.downsyndromeoflouisville.org/]<br>&nbsp;&nbsp;&nbsp;&nbsp;  

&nbsp;&nbsp;&nbsp;&nbsp; • '''Down Syndrome of Louisville'''<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Lifelong learning center for individuals with DS<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o [http://www.downsyndromeoflouisville.org/ http://www.downsyndromeoflouisville.org/]<br>&nbsp;&nbsp;&nbsp;&nbsp;  

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&nbsp;&nbsp;&nbsp;&nbsp; • '''National Down Syndrome Society'''<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Information about Down Syndrome<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Lists resources including:<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Publications<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Managing behavior<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Research<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  And more!<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o [http://www.ndss.org/Resources/ http://www.ndss.org/Resources/]<br>

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&nbsp;&nbsp;&nbsp;&nbsp; • '''National Down Syndrome Society'''<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Information about Down Syndrome<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Lists resources including:<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Publications<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Managing behavior<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  Research<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;  And more!<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o [http://www.ndss.org/Resources/ http://www.ndss.org/Resources/]<br>  

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&nbsp;&nbsp;&nbsp;&nbsp; • '''National Association for Down Syndrome'''<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Programs<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Resources and information<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o [http://www.nads.org/pages_new/resources.html http://www.nads.org/pages_new/resources.html]<br>

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&nbsp;&nbsp;&nbsp;&nbsp; • '''National Association for Down Syndrome'''<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Programs<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Resources and information<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o [http://www.nads.org/pages_new/resources.html http://www.nads.org/pages_new/resources.html]<br>  

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&nbsp;&nbsp;&nbsp;&nbsp; • '''Real Life Down Syndrome'''<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Blog spot<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Gives insight on how to raise a child with DS<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Search resources by state<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o [http://reallifedownsyndrome-resources.blogspot.com/ http://reallifedownsyndrome-resources.blogspot.com/]<br>

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&nbsp;&nbsp;&nbsp;&nbsp; • '''Real Life Down Syndrome'''<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Blog spot<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Gives insight on how to raise a child with DS<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Search resources by state<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o [http://reallifedownsyndrome-resources.blogspot.com/ http://reallifedownsyndrome-resources.blogspot.com/]<br>  

&nbsp;&nbsp;&nbsp;&nbsp; • '''Kentucky Parent Support Groups'''<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Lists support groups by county<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o [http://dbhdid.ky.gov/dbh/files/oflsecb.pdf http://dbhdid.ky.gov/dbh/files/oflsecb.pdf]<br><br><br>  

&nbsp;&nbsp;&nbsp;&nbsp; • '''Kentucky Parent Support Groups'''<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o Lists support groups by county<br>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; o [http://dbhdid.ky.gov/dbh/files/oflsecb.pdf http://dbhdid.ky.gov/dbh/files/oflsecb.pdf]<br><br><br>  

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== Recent Related Research (from [http://www.ncbi.nlm.nih.gov/pubmed/ Pubmed])  ==

== Recent Related Research (from [http://www.ncbi.nlm.nih.gov/pubmed/ Pubmed])  ==

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