Retinopathy of Prematurity

	retinopathy of prematurity Daily update ⋅ April 22, 2015
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	Medical Xpress Caring for blindness: A new protein in sight? Medical Xpress Age-related macular degeneration (ARMD), diabetic retinopathy and retinopathy of prematurity (in newborns) are characterised by progressive ... Flag as irrelevant

Retinoblastoma Discovered in 2-Year-Old's Eye with Mom's Cell Phone

http://www.ibtimes.com/what-retinoblastoma-rare-cancer-discovered-2-year-olds-eye-moms-cell-phone-photo-1917291

Family Eyes the Right Ingredients

A FAMILY in the Esperance region has found the right ingredient for successful fundraising.

The Kershaw family donated proceeds from their country cookbook toward the purchase of a new piece of ophthalmology diagnostic equipment at Princess Margaret Hospital (PMH).

The $100,000 cutting-edge Optical Coherence Tomography (OCT) equipment recently donated to PMH enables doctors to take non-invasive 3D cross-sectional images of the interior of the eyes, in particularly the retina, producing pictures significantly more precise and accurate compared to those produced by conventional diagnostic equipment.

Brett and Shona Kershaw, from West River, donated $20,000 of proceeds from their cookbook, Lexie's Look and Cook Recipe Book, to the PMH Foundation to go towards purchasing the pioneering equipment, which will assist doctors in diagnosing eye conditions and diseases such as retinoblastoma, the type of eye cancer their daughter, Lexie, was diagnosed with in 2011.

The family was inspired to fundraise for PMH Foundation after Lexie was diagnosed and successfully treated for aggressive retinoblastoma at the hospital, after her parents kept noticing a strange silvery-white appearance in Lexie's right eye pupil in photos.

Catching the cancer before it spread to her optic nerve, Mr and Mrs Kershaw made the decision to have Lexie's right eye removed to prevent the return of the disease.

Mr and Mrs Kershaw said Lexie is now a happy, healthy three-year-old.

The family said their fundraising effort was aimed at raising awareness about retinoblastoma.

"Since the start we knew every single dollar of the proceeds from our cookbook would go towards PMH Foundation and would help raise awareness about retinoblastoma," Mrs Kershaw said.

"We're absolutely delighted to have helped fund the purchase of this particular new ophthalmology equipment, because it's a quicker way of diagnosing children's eye conditions, and for the kids it's non-invasive and a bit of fun, like a giant camera that they peek into.

"More than anything we want to thank all of the people who have supported us and made this possible, who have bought the cook book and helped raise awareness about eye cancer."

"My message to other parents is don't hesitate if you have a fear or something niggling you, even if you feel stupid. Go have it checked."

Mrs Kershaw said her family had been overwhelmed by community support across WA for their fundraising initiative, with Lexie's Look and Cook Recipe Book raising an impressive $43,000 so far.

[This article continues at this source link:

http://www.esperanceexpress.com.au/story/1947482/family-eyes-right-ingredients/?cs=12]

Early Intervention: Helping Babies with Visual Impairments

Every state and every area should have access to early intervention. If  the hospital where your child was born has diagnosed the need at birth they should direct you. If you recognize or suspect a problem later your child's pediatrician can direct you.

Early interventionist come to your home while the child is age 0-3. Not just for vision but if the child needs OT, PT Speech... Many of my babies from my preschool class had EIs and the one for VI was so awesome that when each child was about to be three years old she would come to me and tell me about the candidates for my class for multi-disabled babies or for my neighbor who had the preschool class for "vanilla blind" babies. Fortunately, when I was transferred from the preschool class, I was able to see some of my kids and the next door kids again in other schools in classes with sighted children. Some of them left for the school for the blind but because of EA most our children are able to remain in their home schools and attend their neighborhood schools. Even my nephew, born at 5 months gestation had EA. He is now attending a university on a scholarship!

This is a powerful video that shows the lives and progress of young children with visual impairments who participate in the Florida Department of Education Division of Blind Services-funded Lighthouse Early Intervention Program. You will hear first-hand accounts from parents and service providers, and see how much the children have advanced as a result of the program.

Early Intervention services are provided to children from birth to Kindergarten. Services are provided to the child and family in the child's home, day care, school, neighborhood or center-based setting. Learning is structured to maximize the visual and developmental progress of each child. Early Intervention services are critical in preventing unnecessary developmental delays due to vision impairment. Children and families served in the Early Intervention program are empowered to participate in and benefit from activities in the home, community, and school setting. Family participation in the development and delivery of the service plan is an essential component of the Early Intervention program.

Video used with permission from Lighthouse of Central Florida http://www.lighthousecentralflorida.o...

http://youtu.be/6rbHOAtBNew

Retinoblastoma: New Type Discovered in Babies

Sent from my Samsung smartphone on AT&T

Cancer researchers discover new type of retinoblastoma in babies ... Not all forms of retinoblastoma, a pediatric cancer of the eye, may be inherited, a discovery that would spare children years of medical evaluations and offer the ... communications.medicine.iu.edu/.../cancer-researchers-discov...

APH Article on Cortical Visual Impairment

I may have provided this link before but the subject has come up again with some of the teachers of my students trying to get this information across to parents or some of my parents trying to get the concept over to some of the teachers. ~K

What is CVI?

Why your child/students may have impaired vision:

Ocular disorders: pathology of the eye(s)
Neurological visual disorders: disturbed or reduced vision due to various brain abnormalities.
The two types of visual disorders (ocular & neurological) can coexist.
Cortical visual impairment (CVI) is a neurological visual disorder. It is the fastest growing visual impairment diagnosis today.
Definition for Medical Purposes:
Cortical visual impairment (CVI) may be defined as bilaterally diminished visual acuity caused by damage to the occipital lobes and or to the geniculostriate visual pathway. CVI is almost invariably associated with an inefficient, disturbed visual sense because of the widespread brain disturbance. See brain diagrams.
Definition for Educational Purposes:
Cortical visual impairment (CVI) is a neurological disorder, which results in unique visual responses to people, educational materials, and to the environment. When students with these visual/behavioral characteristics are shown to have loss of acuity or judged by their performance to be visually impaired, they are considered to have CVI.
Note: A student whose visual functioning is reduced by a brain injury or dysfunction may be considered blind for educational purposes if visual function is equal to or less than the legal definition of ocular blindness.

The rest of this article can be found at this link:  http://www.aph.org/cvi/define.html

Blindisms: "STOP ROCKING, ADAM!"

When I first started working with children with little and no vision, I recall a 5th grader--totally blind-- being admonished by his classmates to "STOP ROCKING, ADAM!" It seems it was a class effort to help him to stop the rocking while he talked and since his teacher was not present (I was the art teacher) he growled back at them all until one of the boys got closer to say more softly "We're just trying to help you."

I wondered what was wrong with his rocking and that he seemed unaware that he was doing it. I also wondered if it was more of an issue to the sighted than to the blind. Later I learned that helping him to cease the rocking would help him with his public perception in the future. In order for him to have a job later in life or just get along with others he has to appear as "normal" as possible and without mental challenges. That is what other blind people consider as well. They want the sighted to understand that apart form the difference of sight that they are "normal." Rocking and other blindisms distract from that.

What are blindisms?   Dr. Marguerite A. Smith, Morton Chethik and Edna Adelson, in their study " Differential Assessments of 'Blindisms'" [American Journal of Orthopsychiatry, 39(5) October. 1969] define blindisms as

[behavior] including a wide variety of activities, ranging from minor head and hand motions (e.g. head turning, hand rubbing, usual hand postures) through varied rhythmic postural activities (body rocking, rhythmic swaying) to highly complex, ritualistic patterns reminiscent of the activity of severely disturbed (autistic, schizophrenic)  children or adults.

As a more seasoned teacher/specialist for the visually impaired I have learned the consequences of allowing certain blindisms to continue. It is more than just a nuisance habit that makes sighted people dizzy from speaking to someone who is continually rocking. I have seen beautiful children dark recessed eyes and perpetual eye infections from eye poking. I have seen sighted children not want to be around the strange acting child. I have seen people assume that a blind person who rocks does not have the intelligence of a sighted person. However, with my children with multiple disabilities, I have learned to pick  my battles. I had a child who would spin and rock whenever he had the chance. We made  such activity inappropriate for when it was time to sit at our work table but OK if music was playing and it was time to dance.

At any rate, I have a few links to articles on blindisms that I hope will particularly assist parents of young ones who are blind. The last one, I am particularly fond of as it was written by a former "eye poker."

Mannerisms or Blindism (LOFOB) http://www.lofob.org.za/html/mannerisms.html
SensAgent: http://dictionary.sensagent.com/Blindism/en-en/
Beating Blindisms (By Sarah J. Blake, Freelance Writer and Educational Consultant) http://www.tsbvi.edu/seehear/spring02/blindisms.htm

Daisy's Eye Cancer Fund Retinoblastoma Resource Retinoblastoma

Sent from my Samsung smartphone on AT&T.
Retinoblastoma is cancer of the eye that manifests in infants and toddlers. It leads to necessary enucleation or removal of the eye(s). Sometimes it returns once the victim is an adult as in musician Jeff Healy. Hopefully, with the discovery below and continued studies there will be a way to save the vision and more importantly the lives of these young people.  ~K

Daisy's Eye Cancer Fund Rb Resource – MYCNA Retinoblastoma A small number of children with retinoblastoma have two normal copies of the RB1 gene in tumour. Their cancer is caused by too many copies of MYCN the ... www.daisyfund.org/rb/care/genetics/mycna.html

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BBC Story: Sensory room hope for Amelia

Batten's is a horrible disease. I've had about five students with this condition over the years. I seem to find many articles about children with it from the UK. 

This story is about a grandmom raising money and awareness about Batten's Disease.

~K

** Sensory room hope for Amelia **
A Nottinghamshire grandmother is raising money for a "sensory room" for her three-year-old granddaughter, who is not expected to live beyond her eighth birthday
< http://www.bbc.co.uk/go/em/fr/-/news/uk-england-nottinghamshire-20294114 >

** BBC Daily E-mail **
Choose the news and sport headlines you want - when you want them, all
in one daily e-mail
< http://www.bbc.co.uk/email >

Arthur's Lessons in communication

Arthur (from PBS) talks to kids about how children who are visually and hearing impaired communicate. This one is great for the classroom! The lesson plan is already done for you!

http://www.pbs.org/parents/arthur/lesson/communication/index.html

Trendy Hair May Be a Hazard

Hi Ms. Kathy's Kids,

I saw this on www.themercury.com.au and thought you'd like to take a look.
www.themercury.com.au/article/2012/05/14/328111_tasmania-news.html

Cornelia de Lange Syndrome (Spanish video)

Sindrome Cornelia de Lange - YouTube
Tribute to Sebastian Michael Hornadayby skudmissal67 views; Cornelia de Lange Syndrome 0:54. Add to. Cornelia de Lange Syndromeby angzter86181 views ...www.youtube.com/watch?v=8C0lyFKoyXU

Visual Impairments Specialist Scotlandville Elementary http://lee.ebrschools.org/kathynicholslee
http://www.kathyskids.org
http://teacherweb.com/LA/RobertELeeHigh/MrsMichael/t.aspx
http://mskathyskids.blogspot.com

Closure of operating theater Kids might be at the receiving end

TopNews United States
If one operating theater at Temple Street children's hospital is closed then blindness or even death can happen to children. This year the hospital has to be under budget and from next week in order to save money one of the four operating theatres is ...
See the rest of this article...CLICK HERE

Video: Brian Reads a Braille Note from Mom

This is way cute:

Batten's Disease: MOney for Austin

http://austin.culturemap.com/newsdetail/02-06-12-21-38-keith-urban-lends-talents-to-raise-money-for-austin-based-foundation-aimed-at-curing-rare-genetic-disease-affecti/

Grand National Roadster Show

Ms. Kathy thought you would like this article found on Examiner.com: 2012 63rd Grand national roadster show You received this email because Ms. Kathy recommended this link. Copyright © 2011 Clarity Digital Group LLC d/b/a Examiner.com. All Rights reserved.

Cortical Visual Impairments

This article explains it quite well. I want teachers of my kids to understand why glasses don't usually work: http://134.174.13.251/az/Site2100/mainpageS2100P0.html

http://mskathyskids.blogspot.com/

Batten's Disease: Community Turns Out for Hugs and Wishes

Ms. Kathy  has shared the following article from Shorewood Patch:
	Community Turns out for Hugs and Wishes Annual fundraiser for Shorewood H.U.G.S. has record turnout Saturday.... By Dawn Aulet I thought you might be interested in this article from the Shorewood Patch. Read more »

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Arlington public safety hockey game on Saturday to benefit Batten disease sufferer http://blogs.star-telegram.com/crime_time/2012/01/arlington-public-safety-hockey-game-on-saturday-to-benefit-batten-disease-sufferer--1.html

http://blogs.star-telegram.com/crime_time/2012/01/arlington-public-safety-hockey-game-on-saturday-to-benefit-batten-disease-sufferer--1.html

 

Impaired but Empowered: Deaf Blind

Impaired but Empowered: Deaf blind
She has a case of a deaf blind child who came to her when he was nearly 3 yrs old. The parents were too hassled and running around trying to look for solutions ...
impemp.blogspot.com/2012/01/deaf-blind.html