'Cough syrup' could help people with Down syndrome

by Sarah Dingle from ABC Australia:
An ingredient in cough mixture could hold the key to improving language skills for people with Down syndrome.
Researchers from Monash University believe BTD-001 - an ingredient in cough syrup which was first discovered in the 1920s - could improve the memory, language and learning of people with the condition.
Associate Professor Bob Davis, who is the head of the centre for Developmental Disability Health at Monash University, says throughout the last century BTD-001 has been prescribed for everything from persistent coughs to Alzheimer's disease.
"In the 1950s and 60s it was used ... as an ingredient for a drug for people with dementia," he said.
"People with dementia seemed to improve their memory and ... cognitive ability, so the ability to think.
"At that stage the medication had been shown to be safe and while there were some small studies indicating that it seemed to work, it didn't have the large drug trials that are required nowadays."
Since then, Prof Davis says it has been established that BTD-001 improves the conductivity of the nerves in the brain.
He says a US research foundation discovered that in comparison to the general population, the nerves in people with Down syndrome have less conductivity and a diminished ability to store information.
His study, which is based in Australia and New Zealand, is aimed at identifying how memory and cognitive ability is affected by the medication.
Catherine McAlpine, head of Down Syndrome Australia, welcomes the research but has some reservations.
"There are very few research projects into helping people with Down syndrome and the primary area of research is in prenatal testing which has its own ethical boundaries and ethical issues," she said.
"Clearly, if we can do things that help people with Down syndrome be more independent, then that's a good thing for everyone.
"But it can be a little bit complicated when we are talking about quality of life and increased cognition being one and the same because they're not the same thing."
There are about 6 million people with Down syndrome worldwide.

Kent State Student Excels Despite Down Syndrome

from Kent Patch by Kelsey Misbrener:

Megan Rothermel has never let the word “no” stop her from achieving academic success and independence. And she hears the word a lot.
No, she can’t learn Spanish because she has Down syndrome.
No, she can’t be independent because she has diabetes.
But to all the doubters, the short, pony-tailed 23-year-old says, “Watch me.”

Academic ups and downs
The first trial came in kindergarten when Megan’s mother, DeeOnda, tried to enroll her in the Garrettsville school system. The system’s policy said no students with multiple disabilities could attend. They were instead sent to Ravenna schools, which were better equipped for disabled students.
But Ravenna was far away. DeeOnda wanted Megan to go to school with her neighbors so she could make friends close to home. After DeeOnda debated with the Garrettsville school staff, they finally agreed to accept Megan.
She became the first multiple-disability student at the school, and she still talks to her best friend she met in kindergarten.
“Every time we started school, every year, the teachers would be real hesitant about having her in their classroom,” DeeOnda said.
The teachers thought Megan would require a lot of extra work on their part. DeeOnda said it was mainly the Down syndrome that worried them. “And probably ‘cause of my health issue too,” Megan, who’d been silent, adds softly.
Before 1975, students with multiple disabilities were rarely sent to school at all. Many were housed in mental institutions until the Education of the Handicapped Act forced public schools to create special intervention and education programs for the disabled, according to the U.S. Department of Education.
Though teachers had their doubts about Megan, she said she exceeded their expectations.
“The only downfall I had is math. But science, history, language … I excelled in. I got A’s,“ Megan said triumphantly.
In high school, Megan took regular education classes — except for one special education class in English.
Because she didn’t take regular English she couldn’t take a class she was interested in: spanish. School policy dicatated students had to pass the regular English class to take a foreign language.
“So mom said that was okay, and we went and got (Spanish) CD’s, and I taught myself Spanish,” Megan said matter-of-factly.
Along with the tapes, she got some help from the Spanish teacher, Anna Stamolis. Anna said she met Megan after substituting in the special education room.

“She’d always say, ‘I wanna learn to speak Spanish,’” Anna said. So Anna gave Megan a Spanish book to study on her own. She soon found out Megan had a great memory and could learn Spanish words and sentences with ease.
“And I would see the Spanish teacher in the hallway and I would speak to her in Spanish, and then the teacher really liked me; liked how I spoke to her, and invited me to be in her class,” Megan said, grinning.
School administrators made an exception to their rule and let Megan take Spanish.
“I would put the kids to shame because she’d get a 95 or 96 percent on her tests and kids in regular (education) couldn’t do that,” Anna said.

People with Down syndrome have proven quite adept at understanding information, but they often struggle to express the knowledge they’ve retained, according to the National Down Syndrome Society. They have trouble processing information and then focusing attention on one task. Megan’s been taking classes and improving her Spanish for five years.
“I can say, “Hola, muy bien, y tu?” Megan brags, rolling her R’s. She’s also taken two semesters of American Sign Language through Kent State University’s Career and Community Services program for the intellectually disabled. Those classes prepared her for an unexpected opportunity. She got to sign the national anthem at last December’s Special Olympics.
“I stood in front of everybody,” Megan proudly announced.
And she plans on taking Greek next semester.

Breaking away
Megan is 23, but her unpredictable diabetes makes her rely on her mother to help her when her blood sugar is high or low.
She contracted Type 1 Diabetes when she had chicken pox in kindergarten. Her antibodies tried to kill the virus, but instead they unintentionally killed part of her pancreas. The organ stopped producing insulin, and she had to start injecting herself with insulin to regulate her blood sugar.
She must figure out exactly how many carbs she’ll ingest before every meal of the day. For every 15 carbs, she must inject two units of insulin. Megan’s math skills are lacking, so she has to call her mother every time she eats to calculate how much insulin to take.
Even if she painstakingly keeps track of her diet, her blood sugar sometimes still drops or rises for apparently no reason at all. In the past, her mother or high school aids were always around to help her. Now that she’s taking college courses and spending more time on her own she must watch it herself. Not all by herself, though; her best friend Kelsy Hodgkinson is usually there to throw her a sugary treat or tell her to take an insulin shot to bring her back to normal.
Kelsy said Megan starts to yawn and get grumpy when her sugar start to plummet. Kelsy then makes sure Megan eats sugary food to raise it back to normal. If Megan’s sugar is extremely low, Kelsy calls DeeOnda to come and take Megan to the emergency room. Sometimes Kelsy has to call DeeOnda during class.
Once, Kelsy noticed Megan was becoming irritable. She saw Megan reaching for her tube of mini M&M’s, but she knew her fine motor skills weren’t the best because of Down syndrome. Kelsey jumped up, grabbed the tube, ripped the plastic case off, and handed Megan some chocolates.

On her own
Megan’s also ready for another kind of independence.
“She’s got a boyfriend now,” DeeOnda slyly admits.
“Thanks, mom” Megan replied sarcastically — with a hint of excitement.
Megan met her 6-foot tall, brown-haired boyfriend Brad Bohrer in Kent State’s CCS program.
“He came up to me and said, ‘I’m gonna marry Megan,’” DeeOnda said. “I said, ‘You are? Does she know this?’ He said, ‘No,’ and I said, ‘Well Brad, don’t you think you ‘oughta tell her?’”
So Brad told her, and they started dating. Megan brings Brad into the conversation whenever she can, whether it’s mooning over the flowers and stuffed animals he’s given her or giggling about his Michael Jackson-esque dance moves.
“They’re talkin’ about getting married. But it’s not gonna happen ‘til they’re out of school,” DeeOnda said.
“Thanks mom,” Megan grumbled.
So far, they’ve been to the mall, movies and dinner. Though their parents must drive them to dates because neither of them have a driver’s license, Megan’s still hopeful the two of them can live by themselves one day. Even if that means living one driveway from her family’s home. The Rothermels own a guest home in their cul-de-sac, which they’ll give to Megan once she’s ready to move out.
Still, Megan won’t be able to enjoy a traditional family life. Her depleted pancreas can’t support a pregnancy.
“He wants to have five kids, but I’m a diabetic and I can’t put my body through it,” Megan said.
Brad told her he would much rather sacrifice having a baby rather than put Megan’s life in jeopardy.
“So, we switched from five kids to five dogs,” Megan said with a grin.
“I’m okay with the dogs,” DeeOnda chuckled.

Landmark research study shows targeted intervention improves the reading and language skills of children with Down syndrome

from DSE:


A landmark research study has shown that a targeted teaching intervention accelerates progress in reading and language development for children with Down syndrome. The primary results of the study are now available online, ahead of publication in the Journal of Child Psychology and Psychiatry. The study was the first large controlled trial of an intervention designed for children with Down syndrome and was led by researchers at Down Syndrome Education International working with colleagues at the Centre for Reading and Language at the University of York. DSE will be publishing a handbook and other resources, and providing training and support services, to help teachers successfully implement the new reading and language intervention.

Dr Kelly Burgoyne, a Research Psychologist at Down Syndrome Education International who led the study commented, “We are very pleased with the results that clearly indicate the benefits offered by the intervention. We are also pleased with the feedback that we have received from teaching assistants and families about how helpful and enjoyable the intervention has been. We are already starting to pursue new avenues of research based on these results and considering how we will be able to continue to improve the program in the future.”


The first scientific paper from a landmark randomized controlled trial of a reading and language intervention for children with Down syndrome is now available online ahead of publication in the Journal of Child Psychology and Psychiatry. This three year study involved nearly 60 children in schools in York and Portsmouth in the United Kingdom. It was funded by the UK Big Lottery Fund.


for the full article:
Landmark research study shows targeted intervention improves the reading and language skills of children with Down syndrome

iPad: more than a toy it's a powerful teaching tool

From PRWeb from ACDS:

The iPad isn't just about fun and games, it's a voice for those who are unable to or just learning to speak, and a powerful teaching tool. For the last year, many students at ACDS have been able communicate, some for the first time, thanks to the iPad.

"With our population, it's exciting to use 21st century technology to help us with our goal of preparing children to transition on into the public school setting at the age of 5," explained Cecilia Barry, SBL/SDL, principal of ACDS, an early intervention and special education preschool working with individuals with Down syndrome, Autism spectrum disorders and other developmental disabilities and their families.

The road to the iPad began when Jessica Litwack, one of ACDS' speech/language pathologists first heard about how iPads were being used at a convention of the American Speech & Hearing Association in 2010. When she got an iPad as a Christmas present and played with it, she saw the potential. Then there was a student, diagnosed with Apraxia, an oral-motor speech disorder, who had difficulty communicating verbally. His tech savvy parents had discovered the iPad was an effective communication aid for their son at home and his speech therapist coordinated utilization of the iPAD for home and school. Thus, an idea was born.

With donations from the Parent Teacher Organization, individual parents, as well as one provided by the Nassau Suffolk Chapter of the Autism Society of America, ACDS now has 11 iPads. Ideally, ACDS would like all 15 pre-school teachers to have an iPad; right now they are used primarily by the speech pathologists. Better still, ACDS aspires to create a library of iPads that could be loaned out to students.

Using the iPad, ACDS' littlest ones, those ages 2-5, have been able to communicate -- some for the first time. The touch-and-swipe screen gives them the ability to express themselves and serves as a tool that enables these children to participate in classroom activities with their peers.

"The iPad is being used across disabilities and has been remarkable in particular for (use with children with) autism spectrum disorder as well as those with Down syndrome,” said Barry.

The iPad is versatile and can be used as an augmentative device to help individuals communicate. However, the iPad is significantly less expensive than the thousands of dollars that other augmentative devices can cost. It's also just cool, fun, and socially acceptable which matters to children who have shown that they are motivated to learn with the iPad.

"With the iPad, children are motivated to focus and pay attention for a longer period of time. Many children with Down syndrome and autism spectrum disorders are visual learners, so the iPad appeals to their learning style," ¬said Barry. "These kids are not reading, they're using pictures to communicate. For example, they can touch a picture of a sandwich or chicken nuggets on the iPad screen to indicate their preference and a voice recorded on the iPad states their preference in response to their touch," explained Litwack.

Another effective teaching tool of the iPad is it’s camera. It enables the iPad to become more dynamic and specifically geared to each child’s needs. An ACDS teacher recently used the iPad as a means of assessing knowledge of identification of classmates for a child who was unable to speak. Using the ipad’s camera, the teacher took a picture of the individual children in the classroom. The student was shown the iPad with these pictures and was asked to identify his friends when they were named. By touching the pictures on the iPad he was able to pick them out one by one – thus displaying a skill no one previously knew he had.

The iPad has opened a whole new world. "Everybody loves The Itsy Bitsy Spider. But it's different when the kids can touch the screen and it comes to life for them," said Barry.

There are numerous apps designed for children with special needs. “The iPad has apps that not only teach readiness skills in a fun way, but many apps also have the ability to automatically record data on students progress,” said Tricia Leahy, special education teacher. “We can monitor their progress with data that is automatically calculated at our finger tips!”

What's key, is ACDS' coordination with parents. “If an upcoming classroom topic is winter and the target words are coat or hat, I would have parents review the vocabulary pictures on their child’s iPad with their child so that the child would be prepared for the lesson in school. This prepares them to participate, to have a voice with the lesson," said Michele Harrington, Speech/Language Pathologist. The goal, if the child has their own iPad, is to have them practice at home.

Much is said about how technology is being misused by young people, but for the children at ACDS, technology is changing lives. "This is a great opportunity" said Barry.

ACDS, located in Plainview, New York is dedicated to providing lifetime resources of exceptional quality, innovation and inclusion for individuals with Down syndrome, Autism and other developmental disabilities and their families. ACDS has been providing programs and services in and around Long Island for 45 years. ACDS currently serves more than 750 children and adults, providing services that include Early Intervention and preschool special education programs, respite and recreation programs for children, teens and adults, adult Medicaid service coordination and seven supervised group homes in Nassau County.

iPad, iPod, and iPhone apps to help early development

from Down Syndrome Education International:

Down Syndrome Education International is working with developers to create new learning opportunities for children with Down syndrome using portable devices including iPads and iPods. Recently released apps support language, memory and number skills development.

Computerised educational activities have the potential to offer significant benefits for young people with Down syndrome, with an emphasis on the visual presentation of information and opportunities to encourage lots of practice. DSE is working with partners in the UK, Europe and the US to create apps that target the developmental needs and learning styles of young people with Down syndrome. Some of the first of these apps are now available.

Special Words from Special iApps

Special Words teaches children to recognise written words, using pictures and sounds, on iPad, iPhone and iPod touch. The app has 3 games with increasing difficulty, Match Pictures, Match Words and Match Both.

Special Words comes with the vocabulary and pictures from the early steps of DSE’s See and Learn Language and Reading program, comprising of 96 written words children use in their early vocabulary.

It includes matching pictures, written and spoken words, in 8 languages: American and British English, Spanish, Catalan, French, German, Italian and Swedish. Users can easily replace the words and re-record the audio in any other language their child uses. Users can add more words, pictures and sounds for family members, friends, and familiar objects, to increase their child’s interest, and further develop their vocabulary.

Special Words was developed by Special iApps, a social enterprise founded by parents of a child with Down syndrome who have many years of experience in both education and software. Special iApps is donating a proportion of the global sales of Special Words to Down Syndrome Education International.

• Special Words on the App Store (US edition)
• Special Words on the App Store (UK edition)

 

Memory Fun and Counting Fun from Felix Education Apps

Memory Fun is a memory game where the user has to remember the position of picture cards in order to recall the location of two matching cards. Starting with just four cards to choose from, up to 18 cards can be displayed with a vocabulary of over 100 words.

Counting Fun is a simple counting game designed to encourage practising counting from 1 to 10. Sound effects and animation engage the child’s attention while they tap each item displayed on the screen to hear and see each digit.

Felix Education Apps is a family run business based in Oslo, Norway, designing educational apps. Felix Education Apps is donating a proportion of the global sales of their apps to Down Syndrome Education International.

• Memory Fun on the App Store (US Edition)
• Counting Fun on the App Store (US Edition)

Registration opens for Down Syndrome Education Conference in Charlotte, NC, USA

from Down Syndrome Education International:

Registration is now open for the Down Syndrome Education Conference being held in Charlotte, North Carolina on October 20-22, 2011, hosted by the The Down Syndrome Association of Charlotte.

We are presenting a Down Syndrome Education Conference in Charlotte, North Carolina, on October 20-22, 2011, organised and hosted by The Down Syndrome Association of Charlotte. The event is being held at The Blake Hotel in Charlotte.

DSE speakers, including Professor Sue Buckley and Dr Kelly Burgoyne will be presenting in-depth (two day) tracks covering early intervention and early years education, elementary education, and speech and language therapy (October 20-21), and essentials (one day) tracks covering early intervention and early years education, elementary education, and high school education.

• View program (PDF)
• Register online

Down syndrome and Alzheimer's

from newstimes.com:

Dear Readers,

I would like to stray from our regular pattern of answering one of your emails or letters. The reason for this is a particular topic which many of you brought up during a recent lecture given by geriatrician Marina Blagodatny and psychiatrist Neil P. Dolan at the Trumbull Marriott.

The topic in question was dementia, specifically Alzheimer's dementia in people with Down syndrome. I hope that you do not mind my taking the opportunity to write about it some more.

Let's start with the definition of Down syndrome. It is a genetic disorder affecting one in 733 live births and accounts for about 15 percent of intellectual disabilitiy cases.

Symptoms of the learning problems associated with the syndrome range from mild to moderate, as does the patient's functional capacity. The cause of this disorder is, most of the time, an extra chromosome -- or genetic "building block" -- in our body. Chromosome 21 is the one affected. Normally a person has two copies of each of the chromosomes.

In at least 90 percent of Down syndrome cases, a person has three copies of Chromosome 21. This is not an illness one inherits from a parent, at least not in a majority of cases. The most commonly known risk factor is late maternal age. By age 45, a woman's risk of having a baby with this disorder is one in 35.

Life expectancy of patients with Down syndrome has increased dramatically in the last century. From roughly 10 years in the 1920s, it is now quite normal for those with Down syndrome to enjoy life way beyond age 50.

Unfortunately, there are many problems these patients and their families have to struggle with throughout their lives. People born with the syndrome age faster, and are prone to developing dementia.

It is known that 25 percent of Down syndrome patients have dementia by age 35. They are three to five more times more likely to get dementia as compared to patients the same age not born with the genetic disorder.

What is most perplexing is the fact that, although virtually all adult patients with Down syndrome have specific changes in the brain characteristic of dementia, not all of them have the symptoms.

For those of you who are more scientifically inclined, the changes are called neurofibrillary tangles and amyloid plaques, as well as loss of nerve cells in certain parts of the brain.

It must be clarified that people with other forms of intellectual disability not related to Down syndrome have the same risk and rate for dementia diagnosis as the non-affected population.

Scientists still do not fully understand why this is the case, other than that the Chromosome 21 abnormalities must play a significant role. Alzheimer's disease is the most common form of dementia. It is a progressive memory disorder that affects our ability to reason, remember, use language and think.

The disease can attack quickly and lead to demise in only a few years, or linger over 10 to 15 years, affecting not only the patient but the whole family. Approximately 4 million Americans are affected today by Alzheimer's. Presentation of the disease in patients with Down syndrome is quite different from that in other dementia patients.

Loss of language skills and the ability for self-care are quite common early. Seizures happen often in individuals who did not have them before. Incontinence, personality changes and sleep disruptions are also seen.

Since the mental abilities of patients with Down syndrome vary greatly to begin with, diagnosis of dementia is challenging. Unfortunately, the majority of patients are diagnosed late in the process of the illness. Standardized tests used in non-Down syndrome individuals do not apply to this group.

It is crucial for a specialist involved to have some idea of the person's cognitive baseline. Many advocate for the universal screening of Down syndrome individuals around age 30. There is a questionnaire called "The Dementia Questionnaire for Mentally Retarded Persons," which can help, as well as a few other available tools. As a rule, a specialized dementia center is the best place to follow a patient with Down syndrome and Alzheimer's. The input from the caregivers and the primary care physician are considered absolutely necessary for the proper diagnosis and the meaningful follow-up.

One of the important goals of early diagnosis is to rule out other reasons for cognitive decline and behavioral problems that can be potentially curable. Thyroid problems, excessive medication use, severe depression, and unrecognized hearing and vision problems may all present as similar or identical to Alzheimer's. Even simple infection can trick us.

The treatment of Alzheimer's dementia in Down syndrome patients is uncharted waters. Only one out of four drugs available has been tested in these patients, and no drug is specifically approved by the Food and Drug Administration. Trying them, however, may prove very beneficial, as they may help with behaviors and stabilize functional abilities.

Other medications, like antidepressants, mood stabilizers and anti-anxiety medications, may also play a role when used judiciously and closely supervised and monitored.

There is yet another reality of this particular scenario. Many primary caregivers of Down syndrome patients in their 40s and 50s can be their aging parents and/or siblings. Not only do they have to face their own fears about forgetfulness and their own memory lapses, they are often unable to meaningfully plan ahead.

Legal issues are important, as well as financial ones. There has to be a plan of care in case of a caregiver's illness or, as horrible as it is to think about, death.

I strongly recommend that all involved use their local Alzheimer's Association, as well as local Down syndrome support groups and the National Down Syndrome Society. The help of local religious organizations also can be priceless. Government support is available, albeit limited. All of us professionals involved in diagnosis and treatment of dementia are more than willing to help.

Dr. Beata Skudlarska is a Bridgeport geriatrician. Send questions to Bridgeport Hospital Center for Geriatrics, 95 Armory Road, Stratford CT 06614 or geriatricmd@aol.com.

Summer literacy program to boost communication skills

from newsdurhamregion.com:
 
Jill Clements-Baartman knows what a difference speech can make in a person's life. Since she began working with people with Down syndrome in the early 1980s, she has seen a world of opportunities open up for those who develop their language skills.
 
"It's extremely important,"says Ms. Clements-Baartman, a speech pathologist involved in a summer literacy program being launched next month by the Durham Down Syndrome Association.
 
"They're very capable individuals and basically everything in our daily lives depends upon effective communication so the more that we can support effective communication, as well as literacy skills, the greater access that they have to activities in the community."
 
The program offers participants, ages 10 and older, a chance to interact with one another while engaging in various activities, including pottery, wood sculpting and bowling.
 
"On the Monday and Tuesday, there are specific language and literacy goals for each of the participants and then the Thursday, they work at home to develop a presentation and that can be a whole range of different things, depending on the individuals'abilities,"says Ms. Clements-Baartman.
 
The Durham Down Syndrome Association is a non-profit charitable organization, which supports families and other members of the community in working to improve life for people with Down syndrome.
 
Ms. Clements-Baartman, who's been involved with the organization for nearly 20 years, currently runs a direct therapy program called Talking, Language and Communication for children with special needs at a nursery school in Whitby.
 
Speech improvement is one of the biggest challenges for people with Down syndrome, according to association chairman Walter Heeney.
 
"Parents'biggest problem when their child is one to five years old is wondering how to get them to express themselves so you've got them learning a bit of sign language and anything you can before they get into the school system,"he says.
 
Equipped with heightened communication skills, those with Down syndrome -- including Mr. Heeney's daughter Jan, who has been working as a librarian assistant at a school in Pickering for the past 13 years -- can make the most of their lives, he adds.
 
"I've got young kids in this program that are 20 and they're coming out of high school next year. It's our challenge to help them get a job, whether it's volunteer or paid. It's about having a position and somewhere to go to be part of a team."