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Stronger together: Families of girls with SPG47 find support in each other
Imagine your child is diagnosed with a rare neurological condition. So rare that there are only a handful of reported cases, and those are from halfway around the world. This was the case for Chris and Kasey Edwards of Massachusetts and Kevin and Angela Duffy of Pennsylvania. Their daughters’, Robbie and Molly, are among only 11 children in the world to be diagnosed with an extremely rare genetic disorder, called spastic parapalegia-47 (SPG47). “When they told us how rare this was, our minds were going in a thousand directions,” says Kasey, Robbie’s mom. “We didn’t know what to think.” The two families though...
Source: Thrive, Children's Hospital Boston - December 20, 2016 Category: Pediatrics Authors: Ellen Greenlaw Tags: Diseases & Conditions Our Patients’ Stories Department of Neurology Dr. Basil Darras hereditary spastic parapalegia HSP type 47 living with rare disease SPG47 Source Type: news

The many adventures of Wesley: Specialty care helps toddler with heart disease reach neurodevelopmental milestones
Will and Alicia Ethridge knew their unborn son would need complex open-heart surgery soon after birth, due to a serious congenital defect that was detected in utero. Wesley suffered from a genetic form of cardiomyopathy, which meant the walls of his heart muscles were thickened, and blood flow to the left side of his body was restricted. The knowledge about their son’s disease prepared them for many things about the impending medical journey (including arranging for cardiac surgery at the Boston Children’s Hospital Heart Center, just a few hours’ drive from their home in Maine) but there were many more things ab...
Source: Thrive, Children's Hospital Boston - November 3, 2016 Category: Pediatrics Authors: Erin Horan Tags: Our Patients’ Stories Cardiac Neurodevelopmental Program Dr. Caitlin Rollins Dr. Samantha Butler Heart Center Source Type: news

Staff Time Spent on Bureaucracy Robs Stroke Patients of Therapy Staff Time Spent on Bureaucracy Robs Stroke Patients of Therapy
Staff and organizational factors, rather than patient factors, are the main barriers to more intensive physical, occupational, and speech therapy during the acute phase of stroke recovery, a study shows.Medscape Medical News (Source: Medscape Neurology and Neurosurgery Headlines)
Source: Medscape Neurology and Neurosurgery Headlines - November 1, 2016 Category: Neurology Tags: Neurology & Neurosurgery News Source Type: news

Sign language may be helpful for children with rare speech disorder
Using sign language with intensive speech therapy may be an effective treatment for children with a rare speech disorder called apraxia of speech, according researchers. (Source: ScienceDaily Headlines)
Source: ScienceDaily Headlines - September 1, 2016 Category: Science Source Type: news

Speech therapy for children with dysarthia acquired before three years of age
Children with motor impairments often have the motor speech disorder dysarthria, a condition which effects the tone, strength and co-ordination of any or all of the muscles used for speech. Resulting speech difficulties can range from mild, with slightly slurred articulation and breathy voice, to profound, with an inability to produce any recognisable words. Children with dysarthria are often prescribed communication aids to supplement their natural forms of communication. However, there is variation in practice regarding the provision of therapy focusing on voice and speech production. Descriptive studies have suggested t...
Source: Current Awareness Service for Health (CASH) - September 1, 2016 Category: Consumer Health News Source Type: news

In Klinefelter Syndrome Patients, What are the Common Behavioral Problems?
Discussion Klinefelter syndrome (KS) is a common genetic abnormaly with a prevalence of 1 in ~650 male births. It was first described in 1942 by Dr. Harry Klinefelter. It is associated with at least one extra X chromosome with the most common karyotype (~80% of patients) being 47 XXY. Other karyotypes are seen along with mosaicism. It is believed that although it is very prevalent, only about 25-33% of people with KS are identified. About 10% are identified before puberty with the rest usually identified because of hypogonadism and tall stature especially in teenage years or due to infertility in adulthood. KS is diagnosed...
Source: PediatricEducation.org - August 29, 2016 Category: Pediatrics Authors: pediatriceducationmin Tags: Uncategorized Source Type: news

Deep brain stimulation surgery while asleep brings relief from dystonia
Treatment TermsParkinson's and other movement disorders CategoriesTreatments/research advancementsWomen's healthMen's health Additional SEO Keywords deep brain stimulation, dbs surgery, dbs, brain stimulation, dystonia, SEO Meta Description Thomas Galvin suffered dystonia symptoms for decades —until technology at Duke allowed him to have deep brain stimulation surgery while asleep Overview Raleigh resident Thomas Galvin suffered involuntary muscle contractions for decades —until technology at Duke allowed him to have surgery while asleep to quell the repetitive movements. Hero Imagetom_galvin_pho...
Source: dukehealth.org: Duke Health News - August 1, 2016 Category: Consumer Health News Authors: mf205 at duke.edu Source Type: news

Stroke victims abandoned after they leave hospital as experts attack aftercare
A report, based on interviews with 1,200 stroke patients in England, reveals that many are left without the physiotherapy, speech therapy and rehabilitation they need to rebuild their lives. (Source: the Mail online | Health)
Source: the Mail online | Health - May 17, 2016 Category: Consumer Health News Source Type: news

Hear me roar: A mother hunts down answers for her son
If it’s true that raising boys is not for the fainthearted, then Nicole Laws is truly lionhearted. A nurturer and a protector, beautiful and strong, this mother of four boys will hunt down the best solution to a problem … no matter what stands in her way. Mason was born on Jan. 28, 2011, in Syracuse, New York. A month premature, he struggled with eating and breathing, but Nicole wasn’t overly worried. “This was our fourth child. The first three had reflux, so I was thinking, ‘This will be a piece of cake!’” Mason was observed for a few days at the local hospital and sent home. Unfortunately, Mason’s issues ...
Source: Thrive, Children's Hospital Boston - May 10, 2016 Category: Pediatrics Authors: Jenny Fernandez Tags: Diseases & Conditions Our Patients’ Stories Center for Airway Disorders Dr. John Lee Dr. Rachel Rosen Dr. Reza Rahbar Dr. Umakanth Khatwa laryngeal cleft Source Type: news

Playing Ping Pong with Disability
Table tennis players train at Majd Sports. Majd Sports is a recreational centre catering for people with disabilities in Ramallah, occupied West Bank. Credit: Silvia Boarini/IPSBy Silvia BoariniRAMALLAH, Occupied West Bank, Apr 28 2016 (IPS)Despite formally adopting progressive laws, such as Law Number 4, and ratifying the UN Convention on the Rights of People with Disability, Palestinian authorities still struggle to get beyond rhetoric when it comes to supporting the 7 to 11 per cent of the population that is affected by disability. As the ongoing Israeli military occupation of the West Bank and Gaza continues to block t...
Source: IPS Inter Press Service - Health - April 28, 2016 Category: Global & Universal Authors: Silvia Boarini Tags: Active Citizens Armed Conflicts Civil Society Featured Global Geopolitics Headlines Health Human Rights Middle East & North Africa Population Source Type: news

Perfect Piece to the Puzzle
Every year more and more families are getting the news that a loved one is on the autism spectrum. While at first, the news can be overwhelming, scary, and send you on an emotional rollercoaster, over time families learn the best ways to proceed and provide the best care. April is the national month for autism awareness, blue has become the main color associated with the awareness, along with the beloved puzzle piece. I wanted to write this piece because autism has been a very big part of my family. I have seen firsthand what this disorder can do to families and all of those affected. My younger brother is on the spectr...
Source: Healthy Living - The Huffington Post - April 11, 2016 Category: Consumer Health News Source Type: news

Lyrica Plus Speech Therapy May Help in Chronic Cough (CME/CE)
(MedPage Today) -- Benecial effects continued for at least 4 weeks after cessation of pregabalin (Source: MedPage Today Pulmonary)
Source: MedPage Today Pulmonary - March 28, 2016 Category: Respiratory Medicine Source Type: news

Microcephaly: Alainah’s story
Sixteen-month-old Alainah Therrien of Cape Cod was probably never exposed to the Zika virus. But she has a smaller-than-normal head and was diagnosed with microcephaly even before she was born. “I was told when I was 24 weeks pregnant that we would have a daughter who was mentally retarded,” recounts her mother Melissa. Melissa’s labor was induced at 36 weeks because Alainah had stopped growing. After Alainah was born, a tiny 5 pounds, Melissa saw the word microcephaly for the first time on the bottom of a medical form. The pediatrician didn’t know what microcephaly was, but thought perhaps the bones of Alainah’s...
Source: Thrive, Children's Hospital Boston - March 21, 2016 Category: Pediatrics Authors: Nancy Fliesler Tags: Diseases & Conditions Our Patients’ Stories Research Brain Development and Genetics Clinic Dr. Ganeshwaran Mochida Dr. Jeffrey Neil microcephaly Source Type: news

Rehabilitation utilization following a work-related traumatic brain injury: a sex-based examination of workers' compensation claims in Victoria, Australia - Guerriero EN, Smith PM, Stergiou-Kita M, Colantonio A.
OBJECTIVES: To report on and examine differences in the use of four types of rehabilitation services (occupational therapy, physiotherapy, psychology, and speech therapy) by men and women following a work-related traumatic brain injury in Victoria, Austral... (Source: SafetyLit)
Source: SafetyLit - March 19, 2016 Category: Global & Universal Tags: Economics of Injury and Safety, PTSD, Injury Outcomes Source Type: news

Kelsey’s transformation: From stroke survivor to motivational speaker
“When I woke up after my stroke, all I wanted was to be normal again,” recalls Kelsey Tainsh. Normal — as in a healthy teen athlete who could brush her teeth and shower on her own, who wasn’t wheelchair-bound, who wasn’t compelled to hide her paralyzed right hand in her pocket everywhere she went, one who hadn’t lost all of her high school friends except for her two triplet sisters. Now, this world-champion athlete not only learned to walk and talk again but also to embrace her differences. “Our hardest obstacles can be our biggest opportunities,” she says. Kelsey’s first taste of being different came at ...
Source: Thrive, Children's Hospital Boston - March 16, 2016 Category: Pediatrics Authors: Lisa Fratt Tags: Our Patients’ Stories Brain tumor Mark Rockoff R. Michael Scott stroke Source Type: news

Better Speech Therapy for Children with Down syndrome
Study shows children with Down syndrome who have motor speech deficits have been inadequately diagnosed (Source: Disabled World)
Source: Disabled World - February 5, 2016 Category: Disability Tags: Therapy Types Source Type: news

More effective speech therapy approach for children with Down Syndrome
Children with Down syndrome who have motor speech deficits have been inadequately diagnosed, which could have a major impact on the interventions used by speech pathologists when treating patients, a new study indicates. (Source: ScienceDaily Headlines)
Source: ScienceDaily Headlines - February 5, 2016 Category: Science Source Type: news

Study suggests more effective speech therapy approach for children with Down syndrome
(University of Vermont) A new study indicates that children with Down syndrome who have motor speech deficits have been inadequately diagnosed, which could have a major impact on the interventions used by speech pathologists when treating patients. (Source: EurekAlert! - Social and Behavioral Science)
Source: EurekAlert! - Social and Behavioral Science - February 4, 2016 Category: Global & Universal Source Type: news

Ask the Expert: Is my child’s language development on track? 10 things to consider
It’s normal for children to acquire speech and language at different rates — just as they learn to walk at different rates. But if you feel your child is having more trouble communicating than she should, don’t ignore your concerns. Early understanding and expression of language can affect other parts of your child’s development such as play skills, social interaction and the ability to self-regulate. When should you request an evaluation? Drs. Carol Wilkinson, of Boston Children’s Division of Developmental Medicine, and David Urion, of the Department of Neurology, offer their advice and 10 tips on things to watc...
Source: Thrive, Children's Hospital Boston - February 1, 2016 Category: Pediatrics Authors: Nancy Fliesler Tags: Ask the Expert Parenting Carol Wilkinson David Urion Department of Neurology Division of Developmental Medicine language development speech delay Source Type: news

What Is the Rate of Stuttering Recovery?
Discussion Stuttering is defined as to utter with involuntary repetition of sounds. This commonly occurs in young children especially of initial sounds (Li-li-li-like he can’t do that!) but it can be whole word repetition (Like-like-like he can’t do that!). Stuttering as a normal utterance markedly decreases by age 6, so by age 7 if the child has stuttering the child should be evaluated by a professional speech and language pathologist (SLP). Indications for referral to a SLP for stuttering and other problems can be found here. A recent review of stuttering epidemiology found: Initiation of stuttering occurs ...
Source: PediatricEducation.org - November 23, 2015 Category: Pediatrics Authors: pediatriceducationmin Tags: Uncategorized Source Type: news

Mother with life-long stammer now spends all day of the phone - thanks to speech therapy
Yinka Dolan, 49, from Warrington, developed her stammer as a child after being scolded by her stepfather for talking too fast. She now runs a support group for other stammerers. (Source: the Mail online | Health)
Source: the Mail online | Health - October 8, 2015 Category: Consumer Health News Source Type: news

The Most Beautiful Dance I Ever Enjoyed With My Husband
This past weekend my husband, Dan danced at our friend's daughter's wedding. Well, if you consider swaying from side to side dancing, then it qualifies. While it may not seem so remarkable, the fact that Dan wiggled on a dance floor is amazing and wonderful! It was just five years ago that his life took a cruel turn and he suffered a devastating stroke. He couldn't walk, talk or eat. He had a feeding tube in his stomach, and we were told he was "gravely" ill. The stroke had affected his brain stem where bodily functions were regulated, paralyzed the optic nerve and traveled beyond. He received tPA -- tissue plasminogen ac...
Source: Healthy Living - The Huffington Post - September 15, 2015 Category: Consumer Health News Source Type: news

More than 13,000 awaiting assessment for speech therapy
Backlog a ‘disgrace’ requiring coherent reponse, says FF health spokesman Billy Kelleher (Source: The Irish Times - Health)
Source: The Irish Times - Health - August 31, 2015 Category: Consumer Health News Source Type: news

Mason’s story: A newborn with a peach-sized tumor
When Tara Johnson found out— after 10 years of trying to get pregnant—she was carrying boy-girl twins, she was thrilled. “It was so exciting, it felt like a double blessing,” she remembers. The pregnancy progressed normally until her 21-week checkup when everything changed. Doctors found a large growth on the neck of her unborn son. Tara’s care was transferred to Brigham and Women’s Hospital, and doctors from Endocrinology and Otolaryngology at Boston Children’s Hospital formed a team to manage her son’s care. When she was 31 weeks pregnant, Tara and husband Bruce were in Boston to meet with Boston Children...
Source: Thrive, Children's Hospital Boston - August 26, 2015 Category: Pediatrics Authors: Jenny Fernandez Tags: All posts Our patients’ stories Department of Otolaryngology and Communication Enhancement Dr. C. Jason Smithers Dr. Reza Rahbar tumor Source Type: news

Patient effort in traumatic brain injury inpatient rehabilitation: course and associations with age, brain injury severity, and time postinjury - Seel RT, Corrigan JD, Dijkers MP, Barrett RS, Bogner J, Smout RJ, Garmoe W, Horn SD.
OBJECTIVE: To describe patients' level of effort in occupational, physical, and speech therapy sessions during traumatic brain injury (TBI) inpatient rehabilitation and to evaluate how age, injury severity, cognitive impairment, and time are associated wit... (Source: SafetyLit: All (Unduplicated))
Source: SafetyLit: All (Unduplicated) - August 7, 2015 Category: Global & Universal Tags: Economics of Injury and Safety, PTSD, Injury Outcomes Source Type: news

“I got a bike!”: Adaptive bike brings freedom to boy with cerebral palsy
Seven-year-old Hunter Ripley is a boy of few words. There’s a rare “bye-bye” to his mother as he sets off for school and an occasional “whee” when he’s pushed on his adaptive swing.  So when Hunter screamed, “I got a bike!” at the local pool where he does aquatic therapy every Thursday evening, everyone in the pool went silent. “Then the cheering started,” recalls his mother Bekah Ripley. In February, Bekah and her husband Bart learned about The Great Bike Giveaway, a national contest in which children with special needs can win their own adaptive bike. In order to win, Hunter needed votes and lots of ...
Source: Thrive, Children's Hospital Boston - May 5, 2015 Category: Pediatrics Authors: Lisa Fratt Tags: Orthopedics Our patients’ stories Source Type: news

Necklace and smartphone app developed at UCLA can help people track food intake
A sophisticated necklace developed by researchers at the UCLA Henry Samueli School of Engineering and Applied Science can monitor food and drink intake, which could help wearers track and improve their dietary habits.  The inventors of the WearSens device say it could help battle obesity, heart disease, diabetes and other problems related to nutrition. Majid Sarrafzadeh, a distinguished professor of computer science and co-director of UCLA’s Wireless Health Institute, led a team that created the device and an algorithm that translates data from the necklace, and tested it on 30 people who ate a variety of foods.   The ...
Source: UCLA Newsroom: Health Sciences - March 12, 2015 Category: Universities & Medical Training Source Type: news

Does a Primary Language Impairment Affect Both Languages in a Bilingual Child?
Discussion Internationally, bilingualism is the rule. Even in the US which many have considered the holdout for monolingualism, bilingualism is increasing with more than 18% of people (>5 years) speaking 2 languages and it is expected that by 2030 more than 40% of children will learn English as their second language (L2). Children learn two or more languages in different contexts. A child may learn two language with parents speaking two different languages at home since birth, may have one language spoken at home and another in the community (such as a daycare setting) since birth, or may learn one at home since birth ...
Source: PediatricEducation.org - March 9, 2015 Category: Pediatrics Authors: pediatriceducationmin Tags: Uncategorized Source Type: news

“I’m Just In the Band”
Discussion Instrumental music, either as an avocation or profession, provides great pleasure for those performing and listening. Unfortunately it can also cause health problems. Many of the problems are musculoskeletal or neurological in etiology due to overuse and the musician may experience pain. Prelude to pain can include stiffness or tingling or other skin sensations. Musicians may experience weakness, loss of function, control (accuracy) and ability (speed) as well as problems with tone. “The most prevent problems involve overuse of muscles resulting from repetitive movements of playing, often in combination w...
Source: PediatricEducation.org - November 17, 2014 Category: Pediatrics Authors: pediatriceducationmin Tags: Uncategorized Source Type: news

Honest Speech
What does it mean to speak for yourself?read more (Source: Psychology Today Relationships Center)
Source: Psychology Today Relationships Center - November 13, 2014 Category: Psychiatry & Psychology Authors: Katherine Preston Tags: Gender Happiness Relationships Self-Help honesty identity speech therapy voice Source Type: news

Survivor of lightning strike reunites with rescuers
July 27 started out as a typical Sunday for Robert Kilroy, a 56-year-old off-duty seasonal Los Angeles County lifeguard and a chiropractor. The Marina Del Rey resident went to his favorite spot in Venice Beach and was chest-deep in the ocean teaching his daughter Emily Kilroy, 15, how to surf. Suddenly, a rare bolt of lightning from an unexpected summer storm struck the beach, injuring numerous people and tragically killing one young man. The next thing Kilroy knew, he woke up in the Emergency Department at Ronald Reagan UCLA Medical Center. What transpired that afternoon was a series of events that led to Kilroy’s rema...
Source: UCLA Newsroom: Health Sciences - August 30, 2014 Category: Universities & Medical Training Source Type: news

Third of stroke survivors must pay for essential rehab services
Survey finds that half had no access to speech therapy or occupational therapy (Source: The Irish Times - Health)
Source: The Irish Times - Health - April 11, 2014 Category: Consumer Health News Source Type: news

Could Botox be used to treat severe asthma?
Conclusion This small study involved 11 people who had severe asthma symptoms despite optimised treatment and who had abnormal vocal cord movement which was not improved by speech therapy. The results suggest that Botox injections into one of the vocal cords improved asthma control and the airway size at the level of the vocal cords was increased. However, there were no changes in measures of lung function. As the researchers point out, this study was not controlled or blinded and a placebo effect cannot be excluded. It is also not known how long any effect would last, as participants were only assessed for one to three...
Source: NHS News Feed - March 25, 2014 Category: Consumer Health News Tags: Medical practice Medication Heart/lungs Source Type: news

Early Intervention Services Are Available for Your Child with Down Syndrome
Even though we all know that all children with Down syndrome may require physical, occupational and language/speech therapy during their development or maybe throughout their life, more therapy doesn't necessarily equal more advancement and should never be considered a way to fix a child. Therapy is a form of guidance that reinforces your child's development, and at the same time teaches you, as a parent, how to integrate this guidance into your child's natural routines....Read Full Post (Source: About.com Down Syndrome)
Source: About.com Down Syndrome - February 28, 2014 Category: Disability Source Type: news

Keeping Insecurity Away: Bonding Without Spoken Language
Opening the channels of attachment through other means of communicationread more (Source: Psychology Today Parenting Center)
Source: Psychology Today Parenting Center - November 8, 2013 Category: Psychiatry & Psychology Authors: Robert T. Muller, Ph.D. Tags: Child Development Parenting Therapy american sign language ASL attachment communication deaf hearing hearing impaired speech therapy spoken language Source Type: news

Stuttering preschoolers fare as well, if not better
New research from Australia suggests that stuttering is more common among preschoolers than first thought and refutes the idea that it is associated with developmental problems. If anything, the study, which followed 1600 children from birth to age 4, found the opposite: stuttering was tied to better language and non-verbal skills, and showed no discernible link with mental or emotional drawbacks. The findings also support the idea that for many cases of preschool stuttering, "watch and wait" may be better than giving speech therapy straight away... (Source: Health News from Medical News Today)
Source: Health News from Medical News Today - August 27, 2013 Category: Consumer Health News Tags: Pediatrics / Children's Health Source Type: news

Taiwanese researchers demo the quantified tooth
One of the mantras for the quantified self movement seems to be that no place is off-limits for a sensor. MobiHealthNews has written about sensors in clothing, belt sensors, brain wave sensors on the forehead, ingestible sensors, sensors in toothbrushes and sensors in forks. Now a team of researchers from the National Taiwan University in [...] (Source: mobihealthnews)
Source: mobihealthnews - July 30, 2013 Category: Information Technology Authors: Jonah Comstock Tags: Uncategorized accelerometer concussion detection dental sensor food intake food sensor implantable sensors National Taiwan University in Taipei speech therapy wearable sensors X2 Biosystems Source Type: news

Canada subsidizes iPads for speech therapy
Last week, Toronto, Ontario-based MyVoice announced a discounted iPad or iPod Touch program for people who purchase the company’s TalkRocket Go communication app, subsidized by the Ontario Ministry of Health’s Assistive Devices Program, according to the company. TalkRocket Go, normally $99 in the iTunes App Store, uses voice synthesis technology to provide verbal communication for [...] (Source: mobihealthnews)
Source: mobihealthnews - July 16, 2013 Category: Information Technology Authors: Aditi Pai Tags: Uncategorized aphasia iPad communication tool Lingraphica Medicare MyVoice Ontario Ministry of Health speech therapy TalkRocket Go text-to-speech Source Type: news

What Are the Long-Term Cognitive Effects of Galactosemia?
Discussion Galactosemia is a disorder caused by the galactose-1-phosphate deficiency. It is an autosomal recessive disorder resulting from an abnormality of the GALT gene on chromosome 9. There is an incidence of 1:47,000 in the white population. Treatment with lactose-free diets is the mainstay. Lactose is a disaccaride composed of glucose and galactose. Neonates if untreated usually present early with hepatotoxicity (jaundice, hepatosplenomegaly, hypoglycemia), failure to thrive, emesis, hypotonia, renal tubular dysfunction, sepsis, and cataracts. Despite adequate or good compliance with diets longer term problems contin...
Source: PediatricEducation.org - February 11, 2013 Category: Pediatrics Authors: Donna M. D'Alessandro, M.D. Tags: Uncategorized Source Type: news