Tag Archives: Cerebral Palsy

Question?: Rett Syndrome Causes

Sandy asks…

Is my baby just delayed, or is something wrong?

Hi, my daughter will be eleven months old on the 30’th, and she can’t crawl, sit up from a lying position, walk, pull herself up to standing position, or stand at all on her own. All she can do is roll around and sit up (when I sit her up). She can stand with help. She has just started eating a little harder foods like puffs and toast, and just mastered the pincer grasp. I am worried about her large motor skill development though. Is she just a late bloomer, or do you think something may be wrong?

admin answers:

Well, yes she’s definitely delayed but the thing you have to worry about is the cause of the delays. You need to take her to a neurologist and geneticist to investigate the cause. My daughter had the same problems…she turned out to have Rett Syndrome. I’m not trying to scare you, there are a lot of possible causes.. Some severe, some not so severe. If it was just motor problems from hypotonia (low muscle tone) I would not be too worried but she seems to have other delays that would indicate global developmental delays meaning possibly a larger problem. It may be just mild cerebral palsy and she will eventually catch up but definitely get her checked out to rule out other things. Also make sure they test for Rett Syndrome…my daughter has this and it is commonly misdiagnosed as other things. Best of luck to you and I hope you find the cause.

Powered by Yahoo! Answers

Question?: Rett Syndrome Treatment

Thomas asks…

Cerebral Palsy?

Does anyone know any good hospitals which treat celebral palsy. Patient is 4 years old girl, location – Uzbekistan, but we have means to travel and have treatment abroad.
Thanks

admin answers:

There are many so-called ‘cures’ and many different forms of treatment.

Some years ago I took my daughter to a centre in the Uk (she has Rett Syndrome not CP) which was excellent. We had to stop as we could not afford it, but here is a link to their website:

http://www.advancecentre.org.uk/

Good luck

Powered by Yahoo! Answers

Question?: Autism Symptoms In Infants

Jenny asks…

If I had Spinal Meningitis Haemophilus Influenzae type B when I was an infant do I have anythin to worry about?

When I was around 18 months I had Spinal Meningitiss Haemophilus influenzae type B. They told my mother that I could possibly suffer from hearing and/or vision loss from the antibiotics used in during my treatment. I am now 22 years old and have not encountered any problems regarding this matter. The spinal meningitis I had was in fact bacterial. I was more just wondering if and when these hearing and/or vision loss could take place, if ever.

admin answers:

Meningitis causes brain damage and with that come loss of hearing and loss of sight which are actually quite minor side effects from meningitis when you consider all the other problems that people have once they have over come the disease.
If you were going to lose your hearing or sight it happens in hospital while you are being treated and not years down the track so to answer your question you are never going to be deaf or blind unless you end up with another illness that could cause these things.

Im am very happy you survived un like so many thousand of other people who don’t and if they do there left with very serious illnesses including blindness, deafness, seizures, autism, cerebral palsy, loss of limbs, loss of Speech, inability to walk and in some cases even move.
The list goes on and on.
You should be very happy and proud of yourself that you are okay and thank you mum everyday because it was her the noticed the symptoms and got you the treatment that saved your life.

Powered by Yahoo! Answers

Question?: Rett Syndrome Causes

Michael asks…

what is some current research for rett syndrome?

i’m writing it in my brochure and i can’t find it anywhere!

admin answers:

Here are some great facts! Brochures are great when they are loaded with lots of facts and graphics. Use some of these:

Rett syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.

Rett syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay

Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene. Most of these mutations are found in eight different “hot spots.”

Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000 to 23,000 female births.

Rett syndrome is a developmental disorder. It is not a degenerative disorder.

Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

Rett syndrome symptoms appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve.

Rett syndrome is confirmed with a simple blood test to identify the MECP2 mutation. However, since the MECP2 mutation is also seen in other disorders, the presence of the MECP2 mutation in itself is not enough for the diagnosis of Rett syndrome. Diagnosis requires either the presence of the mutation (a molecular diagnosis) or fulfillment of the diagnostic criteria (a clinical diagnosis, based on signs and symptoms that you can observe) or both.

Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of her mutation and X-inactivation. Therefore, two girls of the same age with the same mutation can appear quite different.

Rett syndrome presents many challenges, but with love, therapy and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community.

Good luck in your work! 🙂

Powered by Yahoo! Answers

Question?: Treatment For Autism In India

Carol asks…

If parental uncle is eligible to avail deduction under IT Act for the amount spent on the treatment of niece?

parents of niece have been expired.She is minor and mentally retarded and fully depends upon me,.but does not have adoption/guardianship.If yes,under which section?

admin answers:

Under Section 80DD, total benefit/deduction available to the individual is a fixed sum of Rs 50,000. In case the disability is over 80%, this figure rises to Rs 75,000.

Section 80DD
Deduction under this section is available to an individual who:
Incurs any expenditure for the medical treatment, training and rehabilitation of a disabled dependant

“Handicapped dependant” means a person who – (i) is a relative of the individual or, as the case may be, is a member of the Hindu undivided family and is not dependant on any person other than such individual or Hindu undivided family for his support or maintenance.

The Rule 11A of IT Rule under Sub-rule 2 prescribes ”

(2) For the purposes of sub-section (4) of section 80DD and sub-section (2) of section 80U, the assessee shall furnish along with the return of income, a copy of the certificate issued by the medical authority,—

(i) in Form No. 10-IA-, where the person with disability or severe disability is suffering from autism, cerebral palsy or multiple disability; or

(ii) in the form prescribed vide notification No. 16-18/97-NI.1, dated the 1st June, 2001published in the Gazette of India, Part I, Section 1, dated the 13th June, 2001 and notification No. 16-18/97-NI.1, dated the 18th February, 2002 published in the Gazette of India, Part I, Section 1, dated the 27th February, 2002 and notified under the Guidelines for evaluation of various disabilities and procedure for certification, keeping in view the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 (1 of 1996), in any other case.

Thus for 80DD , there are two set of forms . One is the form 10-IA which is given in I T Rule . The other is for most of the other disabilities defined in the aforesaid notification published in the Gazette of India .It can be downloaded from here . In this notification , under Annexure B , following two types of forms are provided – one for mental retardation and other of other types of disabilities.

Http://www.taxworry.com/2008/01/where-can-i-get-prescribed-form-for.html

Powered by Yahoo! Answers

Question?: Rett Syndrome Research

Chris asks…

Who all here thinks autism is genetic? If you do not think this is the cause-then what do you think?

I have a son with autism and a brother with autism.I feel autism is genetic.

admin answers:

I work for an agency that serves people with developmental disabilities. Based on our own clients, it looks to me like there are several causes, and it is genetic at least some of the time.

One specific cause of autism is Rett’s Disorder; it’s a certain type of brain disorder that affects only females and appears to have a definite genetic component.

Some of our clients with Autism also have other developmental disabilites such as Down’s Syndrome, Cerebral Palsy, Epilepsy, etc. Sometimes it can be traced to brain damage at birth.

We do have several clients from the same families who have the same or similar disorders; such as Austism.

I noticed one thing; I have seen where it’s fairly common for children diagnosed with Autism to have a relative (parent, aunt, uncle or aunt, grandparent) who has a mental illness such as schizophrenia or bipolar disorder. I don’t know if any link has been proven.

The Center For Disease Control did research on autism (some of the information they used was from our agency). They found no connection between autism and the mercury in vaccines.

Powered by Yahoo! Answers

How to be a special needs parent

Kathy Marshall is the first “special”parent that I connected with. Her son John and my son Matthew were in the kindergarten together in a special day class. John, I learned, had cerebral palsy. Kathy had a bemused smile on her face when she told me this. I wondered what that was all about, but it made me feel less anxious about my situation. Matthew was described as pervasively developmentally delayed, a phrase that I took literally, and I was in the process of helping him catch up, hopeful that this would be the only year that he’d need special education.

I was struck by how comfortable Kathy seemed in a room full of 5 and 6 year olds with developmental disabilities.She chased after her mischieveious son John cheerfully when he bolted away with a handful of cookies, maintaining an upbeat conversation the entire time. Seeing this woman looking positive and engaged rather than downbeat and bedraggled gave me hope. Looking back, I think meeting her was my first “Aha” moment special-mom-style. I was going to be OK.

Kathy doesn’t know this, but she was the role model that I needed to get me on the path toward acceptance. I’d like to pass the lessons that she taught me by example on to you:

HOW TO BE A SPECIAL NEEDS PARENT

Offer words of encouragement to new special parents—Not “God will only give you as much as you can handle” or “The limit of human endurance has yet to be reached.” They’ll hear that plenty down the road.“ Try “You seem like a great parent. I know you’re overwhelmed but once you find helpers, and a circle of support, things will improve. I have some names right here…”Teach others how to relate to your child by showing them how you do it–Gracefully and with love.Share resources freely. Pull names and phone numbers out of your head, or from scraps of paper in your purse, your pocket, or your smart phone.Treat your helpers and circle of support really really well, because they are your lifeline and your family.Venting is good, and whining is bad. Period.Stay connected to parents of special kids, even when your children go in different directions.Admit it when you are going through a particularly difficult phase with your child, and ask for help. Brainstorming is good. Special parents like to share their expertise.After a good venting/brainstorming session, take a deep breath and remember how hard it is to be your child. Give them the admiration they deserve.If venting and brainstorming are not enough, seek guidance from a professional-one of your special parent friends might have a good referral that they can scribble on the back of a gum wrapper.
For the last several years, Matthew has called Kathy at least weekly. “Is he overcalling?” I’ve asked, and she says no. “I love my talks with Matthew.” John had become non-verbal, and she would have given anything to have such conversations with him.

***

Kathy’s son John passed away unexpectedly last week, most likely from a seizure in his sleep. All who knew him and who know his wonderful parents are devastated. John was only 24 years old. One of the first things Kathy told me after she told me the news was “I hope Matthew still calls me!”

He will, Kathy. Thank you for talking with him. And thank you for teaching me how to be a special mom.

***

John attended a wonderful day program– RES/SUCESS–that I wrote about a while back. If you have a special needs child, I suggest you learn more about programs like RES. I think it is smart to support such programs so that they will be ready when your child needs them! Your regional center should be able to help you identify which programs fit your adult child’s needs.

***

Got  questions? Need resources? Email me at lshumaker@sfgate.com and I will do my very best to help.

***

FOLLOW ME on FACEBOOK and TWITTER and read the just first three chapters of A REGULAR GUY:GROWING UP WITH AUTISM HERE. I think you will like it.

View the original article here

Facilitated communication

Facilitated communication

Facilitated communication (FC) is a method intended to help people with severe neurological impairment to use communication aids with their hands.

In the 1970s, Rosemary Crossley, who worked as an aide in an institution for individuals with multiple disabilities, began working with a woman who had cerebral palsy. She encouraged the woman to communicate by using Ms. Crossley as her facilitator. This was the beginning of the use of Facilitated Communication for people with disabilities, including ASDs.

Advocates of Facilitated Communication believe that autistics have the mental capacity required for communication, but lack the physical capacity to do so. Therefore, they say that if a facilitator supports the autistic’s arm or hand, they are able to type or use other types of boards to communicate. The immediate aim of FC is to allow the user to make choices and to communicate in a way that has been impossible in the past. The ultimate goal of the method is to enable the person to use an augmentative communication device independently.

In 1986, Ms. Crossley founded the DEAL Communication Center in Melbourne, Australia. The Center’s objective is to “assist people without or with dysfunctional speaking abilities to find alternative means of communication.” The prevalent theory at the Center is that autism is not a social or communication disorder, but a physical deficit that prevents communication.

A qualitative study conducted by Biklen in 1990 asserted that 90% of children with autism would be able to communicate using Facilitated Communication and that once they were able to communicate, they would display normal to high intelligence levels. However, other research studies have not been able to duplicate these findings.
People who question the validity of Facilitated Communication, wonder whose thoughts are really being communicated – the facilitator’s or the autistic’s. Is there really any way of knowing whose thoughts are coming through? Even Biklen concurs that the facilitator may be responsible for influencing the communicator.

Research conducted by Wheeler et al. in 1993 reviewed the responses of 12 autistics who used a facilitator. The responses were typed in response to pictures the communicators were familiar with. The conclusion of the research was that there wasn’t just some level of influence, but that the communication was entirely controlled by the facilitators.

Another question brought up by skeptics is how the physical contact made between the facilitator and the communicator enables communication. In 1997, a study conducted by Kezuka used a mechanical device to support the arm rather than a facilitator. The research showed that people who used a mechanical arm were not able to respond to questions without their human facilitator. Proponents of Facilitated Communication contend that the physical contact provides emotional support and forges a bond that gives the individual the confidence to communicate.

Yet, despite the controversies surrounding Facilitated Communication, it has been used in intelligence tests.

Individuals who had previously been tested as severely mentally impaired and later used facilitators tested in the normal range and, based on the testing using a facilitator, have been placed into regular classroom settings. And, Facilitated Communication has also been used within the legal system to provide testimony in criminal, domestic, and custody cases.

In fact, Facilitated Communication has been used as evidence to remove disabled people from homes and to fire staff accused of abuse.
Facilitated Communication has become widely popular since it first came on the scene.
It’s only recently that people have begun to question whether or not the treatment method holds any real scientific value.

Facilitated communication

Enhanced by ZemantaTagged as: Facilitated communication

View the original article here

Simple Task For 6-Month-Olds May Predict Risk Of Autism

Main Category: Autism
Also Included In: Pediatrics / Children’s Health
Article Date: 18 May 2012 – 1:00 PDT Current ratings for:
‘Simple Task For 6-Month-Olds May Predict Risk Of Autism’
5 starsnot yet rated
A new prospective study of six-month-old infants at high genetic risk for autism identified weak head and neck control as a red flag for autism spectrum disorder (ASD) and language and/or social developmental delays. Researchers at the Kennedy Krieger Institute concluded that a simple “pull-to-sit” task could be added to existing developmental screenings at pediatric well visits to improve early detection of developmental delays.

“Research aimed at improving early detection of autism has largely focused on measurement of social and communication development,” said Dr. Rebecca Landa, study author and director of the Center for Autism and Related Disorders at Kennedy Krieger Institute. “However, disruption in early motor development may also provide important clues about developmental disorders such as autism.”

Dr. Landa will present this and other new research on motor delay and how it impacts development of language and social skills at the International Meeting for Autism Research, an annual scientific meeting convening May 17 in Toronto to provide researchers from around the world with a focused opportunity to share the rapidly moving scientific investigation of ASD.

While previous studies have shown that head lag indicates developmental delays in children with cerebral palsy and preterm infants, postural control in infants at risk for ASD had not been examined. In the current study, Dr. Landa and her team assessed infants in a “pull-to-sit” task, a simple measure of postural control in infants. Typically developing infants achieve this type of postural control by four months of age.

Dr. Landa’s team studied two groups of infants. The first group consisted of 40 infants, ages 5.6 to 10 months, considered to be at high genetic risk because a sibling had autism. Dr. Landa and her team examined their ability to maintain head alignment when being carefully, yet firmly, pulled by the arms from lying flat on his/her back to a sitting position. Infants were scored according to whether their head maintained alignment with the spine, or was in front of the spine, during the task. Lack of this head control indicated head lag.

Participants were tested for head lag at 6, 14, 24, and, for outcome diagnosis, at 30 or 36 months, the age that diagnosis of ASD is considered definitive. At the end of the longitudinal study, infants were classified into three outcomes: 90 percent of infants diagnosed with ASD exhibited head lag as infants; 54 percent of children meeting criteria for social/communication delay had exhibited head lag as infants, and; 35 percent of children not meeting the criteria for social or communication delay or ASD exhibited head lag at 6 months. In the second group, researchers examined six-month-olds at a single point in time for the presence of head lag. Dr. Landa and her team found that 75 percent (n =15) of high-risk infants exhibited head lag, compared to 33 percent (n =7) of low-risk infants, further supporting that head lag is more likely in infants at risk of developing ASD. “Our findings show that the evaluation of motor skills should be incorporated with other behavioral assessments to yield insights into the very earliest signs of autism,” said Dr. Landa.

“While previous research shows that motor impairments are linked to social and communication deficits in older children with autism, the field is just starting to examine this in younger children,” said Dr. Landa. “Our initial research suggests that motor delays may have an important impact on child development.”

Building on the head lag research, Dr. Landa’s team conducted a separate longitudinal study with 14-, 24- and 36-month-old children at high and low risk of developing ASD. The study found that motor delay becomes increasingly evident as children with ASD near their third birthday, yet not all children with ASD experience motor delay. Results showed that children with ASD who experience motor delays are more severely impaired by three years of age than children with ASD with no motor delays.

“While more research is needed to examine why not all children with ASD experience motor delay, the results of our studies examining motor development add to the body of research demonstrating that early detection and intervention for infants later diagnosed with autism is possible and remains crucial to minimize delays and improve outcomes,” said Dr. Landa.

Article adapted by Medical News Today from original press release. Click ‘references’ tab above for source.
Visit our autism section for the latest news on this subject. Kennedy Krieger researchers will present the head lag findings during a poster session on Friday, May 18 between 1:00 – 5:00 p.m. ET in the Sheraton Centre Toronto, Sheraton Hall. Dr. Landa’s presentation about the impact of motor delays on development will be held on Friday, May 18 at 3:15 p.m. in Grand Ballroom East.
Other researchers who contributed to the head lag study were Joanne Flanagan, MS, OTR/L, of Kennedy Krieger Institute; Anjana Bhat, PT, PhD, of the University of Connecticut; and Margaret Bauman, MD, of Harvard Medical School and Massachusetts General Hospital.
Support for the head lag study was provided by National Institutes of Mental Health, Cure Autism Now (now Autism Speaks) and The Karma Foundation.
Kennedy Krieger Institute Please use one of the following formats to cite this article in your essay, paper or report:

MLA

Kennedy Krieger Institute. “Simple Task For 6-Month-Olds May Predict Risk Of Autism.” Medical News Today. MediLexicon, Intl., 18 May. 2012. Web.
19 May. 2012. APA

Please note: If no author information is provided, the source is cited instead.


‘Simple Task For 6-Month-Olds May Predict Risk Of Autism’

Please note that we publish your name, but we do not publish your email address. It is only used to let you know when your message is published. We do not use it for any other purpose. Please see our privacy policy for more information.

If you write about specific medications or operations, please do not name health care professionals by name.

All opinions are moderated before being included (to stop spam)

Contact Our News Editors

For any corrections of factual information, or to contact the editors please use our feedback form.

Please send any medical news or health news press releases to:

Note: Any medical information published on this website is not intended as a substitute for informed medical advice and you should not take any action before consulting with a health care professional. For more information, please read our terms and conditions.


View the original article here

Facilitated communication

Facilitated communication

Facilitated communication (FC) is a method intended to help people with severe neurological impairment to use communication aids with their hands.

In the 1970s, Rosemary Crossley, who worked as an aide in an institution for individuals with multiple disabilities, began working with a woman who had cerebral palsy. She encouraged the woman to communicate by using Ms. Crossley as her facilitator. This was the beginning of the use of Facilitated Communication for people with disabilities, including ASDs.

Advocates of Facilitated Communication believe that autistics have the mental capacity required for communication, but lack the physical capacity to do so. Therefore, they say that if a facilitator supports the autistic’s arm or hand, they are able to type or use other types of boards to communicate. The immediate aim of FC is to allow the user to make choices and to communicate in a way that has been impossible in the past. The ultimate goal of the method is to enable the person to use an augmentative communication device independently.

In 1986, Ms. Crossley founded the DEAL Communication Center in Melbourne, Australia. The Center’s objective is to “assist people without or with dysfunctional speaking abilities to find alternative means of communication.” The prevalent theory at the Center is that autism is not a social or communication disorder, but a physical deficit that prevents communication.

A qualitative study conducted by Biklen in 1990 asserted that 90% of children with autism would be able to communicate using Facilitated Communication and that once they were able to communicate, they would display normal to high intelligence levels. However, other research studies have not been able to duplicate these findings.
People who question the validity of Facilitated Communication, wonder whose thoughts are really being communicated – the facilitator’s or the autistic’s. Is there really any way of knowing whose thoughts are coming through? Even Biklen concurs that the facilitator may be responsible for influencing the communicator.

Research conducted by Wheeler et al. in 1993 reviewed the responses of 12 autistics who used a facilitator. The responses were typed in response to pictures the communicators were familiar with. The conclusion of the research was that there wasn’t just some level of influence, but that the communication was entirely controlled by the facilitators.

Another question brought up by skeptics is how the physical contact made between the facilitator and the communicator enables communication. In 1997, a study conducted by Kezuka used a mechanical device to support the arm rather than a facilitator. The research showed that people who used a mechanical arm were not able to respond to questions without their human facilitator. Proponents of Facilitated Communication contend that the physical contact provides emotional support and forges a bond that gives the individual the confidence to communicate.

Yet, despite the controversies surrounding Facilitated Communication, it has been used in intelligence tests.

Individuals who had previously been tested as severely mentally impaired and later used facilitators tested in the normal range and, based on the testing using a facilitator, have been placed into regular classroom settings. And, Facilitated Communication has also been used within the legal system to provide testimony in criminal, domestic, and custody cases.

In fact, Facilitated Communication has been used as evidence to remove disabled people from homes and to fire staff accused of abuse.
Facilitated Communication has become widely popular since it first came on the scene.
It’s only recently that people have begun to question whether or not the treatment method holds any real scientific value.

Facilitated communication

Enhanced by ZemantaTagged as: Facilitated communication

View the original article here