November 29, 2006
Respite Care: Giving Yourself a Break
Respite care is the temporary residential care for a patient with the intention of providing some relief for families and care givers. Respite care is important — often care givers can have seemingly overwhelming stress that gets in the way of their ability to cope and function.
Finding time for yourself is vital. Plan to take a class you enjoy, go to a movie with your husband or the library with other children or even a vacation. Keeping yourself balanced and focused will help all the members of your family and you will be better able to cope with the intensity of caring for your special needs child.
Taking the time to balance the needs of the special needs child will help with your ability to cope and mother your special needs child and as well as maintain a personal and family balance.
There are many organizations that can help you find respite care:
You can find respite care by State here: National Respite Care Locator (Other Respite Care Services)
- ARCH National Resource Center for Respite and Crisis Care Services
Assists and promotes the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums. - Respite Care: A Gift of Time
From the National Information Center for Children and Youth with Disabilities (NICHCY) - Respite Care for Children Who Are Medically Fragile
From the ARCH National Resource Center for Respite and Crisis Care Services - Respite Care for Children with Autism
From the ARCH National Resource Center for Respite and Crisis Care Services - Respite Care for Children with Developmental and/or Physical Disabilities: A Parent’s Perspective
From the ARCH National Resource Center for Respite and Crisis Care Services - Respite Care for Children with HIV-related Conditions
From the ARCH National Resource Center for Respite and Crisis Care Services - Respite Care: Q & A’s
From Arc - Understanding the “Temporary Child Care for Children with Disabilities and Crisis Nurseries Act”
From the ARCH National Resource Center for Respite and Crisis Care Services
New Booster Seat Laws in Missouri Take Effect. Free or Discounted Booster Seats for Families
Missouri’s new booster seat law is now in effect, requiring children to ride in a booster seat until they reach 8 years old or 80 pounds or 57 inches tall. St. Louis Children’s Hospital has helped hundreds of families comply with the new law by giving them free or discounted seats.
http://stlouischildrens.org/tabid/109/itemid/4072/New-Booster-Seat-Law-Takes-Effect-in-Missouri.aspx
Musical Instrument for Therapy Looking for Study Groups
I got this email today, contact info below:
We are a small company in Haifa, Israel who developed a music instrument for
therapy. Our main focus was cognitive disabilities, Autism, CP (cerebral palsy) and
rehabilitation. Please refer to our website at analog-tone.com.
The Soundgen as a therapy tool showed very promising performance. It could be put to use to achieve various therapy objectives. We are interested in finding a group that could carry a pilot with the Soundgen in the Dallas Fort Worth area; however, we are open to get suggestions from other states, areas in USA. The population that we are looking at is kids with Autism, CP
and Rett syndrome. The group should be involved with an educational academy or school, and provide both occupational and music therapy services.
Contact:
Farah Jubran
Manager and Chief Engineer
011-972-4-8102691
011-972-52-2998864
Magnetic Molecular Energizer or MME Therapy
Magnetic Molecular Energizer is basically a treatment where the patient lays between two large strong magnets. Proponents of the therapy claim it will influence microcirculation, neurotransmitters, hormone release, etc. and result in overall improvement for people suffering from spinal cord injury, brain injury, stroke impairment, multiple sclerosis, muscular dystrophy, cerebral palsy, Parkinson’s disease, and Alzheimer’s disease.
The treatment is undergoing clinical trials. In its trial studies, results are being achieved with many neurological conditions where mainstream methods have previously failed. The patient lies on an open table between two large magnetic coils. In its trial studies, results are being achieved with many neurological conditions which have been untreatable with conventional methods. The patient lies on an open table between two large magnetic coils with the focal point above and below the head. The device is powered by a pure DC field provided by a specially designed AC/DC converter.
The theory of Magnetic Molecular is that the body is electromagnetic, composed of charged particles – atoms, protons, electrons and ions. When the human body parts in placed in magnetic field (a range between 3000 to 5000 gauss) the charged particles in the body parts in are affected by the magnetic force. There is an increase in velocity of orbiting electrons causing precession (change in the direction of the axis of a rotating object) leading to enhanced electron transfer, which is the basis of all chemical reactions in the body.
The treatment is quite controversial. One of the reasons many are dubious is because of the high price tag – around 50 dollars and hour. Treatment centers recommend a goal of 200 hours under the magnet – sleeping over night between the magnets.
Results have been anecdotal. Many swear by the treatment, others think it’s a waste of money.
More info:
http://www.healing-arts.org/children/cp/cpmagnetic.htm
http://www.devicewatch.org/reports/mme.shtml
November 27, 2006
Overcoming the Odds: Canyon High’s Travis Higgins has found a way to contribute to the Cowboy football program.
Another great news story of a young man overcoming the odds and enjoying life, and the game of football. A very moving story on the challenges Travis Higgins face throughout his life and how he ended up playing football for his school team despite suffering from hemiplegia cerebral palsy.
By Cary Osborne
Signal Sports Editor
Thursday November 23, 2006
Canyon High sophomore Travis Higgins’ statistics are as follows: zero yards rushing, zero yards passing, zero tackles — zero games.
On a Tuesday, three days before Canyon’s first round playoff game against Royal High, Travis watched the Cowboys practice from the steel benches guarding his field — the press box.
Would he like to be out there practicing?
“I wish,” he says. “I wish.”
Travis can’t, though.
Travis suffered a stroke while in his mother Debby’s womb.
Debby doesn’t know when it happened, but said she first noticed something was different about her son when Travis had just turned 1.
“He started not reaching normal milestones,” she says. “I thought he’d be closer to walking.”
She took Travis to the doctor, thinking maybe he had a hip condition, but the X-rays were normal.
She then took him to a neurologist where he was given an MRI.
The right hemisphere of his brain was normal in the printout.
The left was completely black.
Because of the stroke, Travis has a form of cerebral palsy called hemiplegia.
Hemiplegia is an incurable condition that paralyzes one side of the body — Travis’ right side in this case.
Travis will insist he is normal and by first appearance he is.
He likes sports — USC football being his favorite team.
To read full article visit: http://www.the-signal.com/?module=displaystory&story_id=34546&format=HTML. Read more inspirational and uplifting stories about cerebral palsy.
Peto Treatment (Conductive Education) Introduced to Vietnam
The sometimes controversial Peto treatment, also known as Conductive Education, is brought into Vietnamese hospitals and showing lots of promise.
Vietnam receives Hungarian cerebral palsy treatment
A course of treatment for cerebral palsy in children, first developed in Hungary in the 1950′s, which is being tried out by the Central Pediatrics Hospital in Hanoi is proving highly effective.
Deputy Head of the hospital’s Rehabilitation Ward, Dr. Tran Thu Ha, said in just two weeks after employing the Peto treatment, seven children with cerebral palsy had made great progress.
Most often, children with cerebral palsy settle into wheelchairs for the rest of their lives. However, with Peto cerebral palsy treatment, which uses language and exercises, patients reportedly have a much higher chance of getting well again than with any other cure.
To read the full article: http://www.thanhniennews.com/healthy/?catid=8&newsid=22546
Community to Build House for Cerebral Palsy Victim
Habitat for Humanity builds home for teenage boy and his parents.
Community to build house for Cerebral Palsy victim
By WAYNE MORTON
Anderson Independent-Mail
November 24, 2006Giving to help others has special meaning in Lavonia this holiday season as Franklin County residents prepare to build a unique home for a cerebral palsy victim and his parents.
Keifer Reynolds, 16, son of Keith and Pat Reynolds, has cerebral palsy and is confined to a wheelchair, according to Jerry Beaty, board member of the Franklin County Habitat for Humanity.
“Their home is far too small for a wheelchair, so we are going to build a new handicapped-accessible home complete with ramps, rails and lifts,” he said.
Keifer has other medical issues associated with his disease and will have brain surgery in a few weeks.
“We are also going to build a roll-in shower and lifts into the ceiling so Keifer can be moved from room to room much easier,” Mr. Beaty said. “We just want to make it easier for him and for his parents.”
A number of volunteers who work in the construction industry stand ready to help with the six-month project, which will require giving up holiday time to help the family.
“The sacrifice is what it is all about,” Mr. Beaty said. “That’s what we are about in helping others.”
Under Habitat for Humanity guidelines, candidates for a house are screened and receive financial counseling to determine the level of their ability to pay construction costs. The Franklin County Habitat for Humanity, organized in 1996, has constructed four homes in the county. The Reynolds house will be the first in Lavonia.
“What is truly amazing and people will want to come to see (is when) the four walls go up and the roof (is) put on, all in one day,” Mr. Beaty said.
Habitat for Humanity International is a non-profit, ecumenical Christian housing ministry based in Americus, Ga. More than 200,000 houses have been built worldwide by the organization. There are more 2,100 affiliates like the Franklin County group located in 92 countries and all 50 states in the United States.
Volunteers are needed and may contact the Franklin County Habitat for Humanity at (706) 356-5479, or by e-mail at franklinhabitat@yahoo.com. Visit Franklin County Georgia Habitat for more information.
Read more inspirational stories about cerebral palsy.
November 23, 2006
Strongest Predictor of Cerebral Palsy: Preterm Birth
Strongest Predictor of Cerebral Palsy: Preterm Birth
A baby can develop cerebral palsy for many reasons, there is no one cause. However, the leading cause of cerebral palsy is brain injury from premature birth. Brain injury in premature babies can be caused two ways: from lack oxygen getting into the because a babies lungs are not fully developed or from an infection that causes brain damage. Because lungs do not fully develop until the last stages of pregnancy, babies who are born preterm, even late preterm are at higher risk for developing cerebral palsy. An infection at the time of preterm birth can result in injury to the premature brain white matter; this is known as periventricular leukomalacia (PVL). This damage will also increase likelihood of cerebral palsy. With the risk of brain damage and cerebral palsy being high, special care should be taken to avoid preterm birth, even late preterm birth. Or in case where preterm birth is imminent, steps can be taken to help babies lungs develop before birth. Preventing unnecessary preterm birth or helping unborn babies lungs develop rapidly will reduce chance of a baby having cerebral palsy.
The reason for cerebral palsy is because of damage to the brain or brain injury. The causes of the brain damage are varied and sometimes inconclusive. There are two main causes of brain injury; developmental brain malformation, when the brain does not develop properly or because of neurological damage done to the brain during development, basically a lack of oxygen to the brain.
Because preterm babies are born with less developed lungs they are at higher risk for brain injury from of lack of oxygen. Premature babies are 8 times more likely to develop cerebral palsy then full term babies. A baby is considered premature if born before 37 weeks of gestation. A late preterm birth is between 34 and 36 weeks gestation. This is the time when a baby’s lungs are finishing developing. It is very difficult to determine the exact time a baby is conceived and easy for dates to be off a week or more. If you’re due date determined by your doctor is off by a week or two you may end up with a preterm baby and some of the medical conditions associated with a preterm birth. If your doctor induces labour or recommends a cesarean section and your baby is born at 34-36 weeks the baby may have problems with breathing, feeding, maintaining his body temperature and jaundice. Preterm birth is the number one predictor for a child developing cerebral palsy.
The most common cause of brain injury in a premature baby is an infection or lack of oxygen causing PVL, which is characterized by the softening death of the white matter of the brain. PVL is caused by a lack of oxygen or blood flow to the periventricular area of the brain, which results in the death or loss of brain tissue. This increases the risk of asphyxia and other injury to the brain, which in turn increases the incidence of cerebral palsy. Approximately 60-100% of infants with PVL later develop signs of CP.
When you have a preterm baby your baby is at higher risk for asphyxia and PVL.
If a premature birth is imminent, there are medications you take to help speed up the process of your baby’s lung development. A baby born at full term‘s lungs will naturally produce surfactant, which lubricates the lining of the air sacs within the lungs. This allows the inner surfaces of the air sacs to slide against one another without sticking during breathing. Premature infants whose lungs are producing surfactant have an improved ability to breathe on their own, or with less respiratory treatment, after birth. Corticosteroids are considered standard treatment for women who are 24 to 34 weeks pregnant and may deliver within the next 1 to 7 days. Taking these medications will reduce the risk of brain damage and cerebral palsy.
Avoiding Premature Birth
There are many medical interventions that can help delay or prevent premature birth. Some things your doctor may decide to do if you go into premature labour may include bed rest, medications to stop labour (Magnesium sulfate, terbutaline, brethine), medications to prevent infections and thorough evaluation of your baby’s health.
Another way to avoid a preterm birth is to not have a medically unnecessary induced labour or Cesarean by choice. This is a where a mother opts to have her labour induced for reasons for convenience or sentimentality,
Fetal Blood Monitoring Is Pointless?
The OxiFirst Fetal Oxygen Saturation Monitoring System, a test which checks how much oxygen is in fetal blood before delivery, was found to have no impact on whether a C-section was needed, neither did it have any bearing in the health of the newborn baby, say researchers from the U.S. National Institute of Child Health and Human Development’s Maternal/Fetal Medicine Units Network. The researchers concluded there are no compelling reasons to use this new technology.
You can read about this study in the New England Journal of Medicine (NEJM).
To read complete article: http://www.medicalnewstoday.com/healthnews.php?newsid=57445
Online Auction to Raise Funds for Ronald McDonald House
Ronald McDonald House is a godsend for many families needing short or long term accommodations while their child receives medical treatment. It is not just somewhere to stay, but also offers a home like atmosphere and support. Many families with children affected by cerebral palsy are forces to travel out of state and far from home to receive the best medical care. Ronald McDonald house has been a viable option for these families and here is a way to help.
What if the money that you spent on holiday gifts all went to help children and families? What if terrific, unique items were available in a convenient online auction and you could view and select gifts without long lines, crowded stores and jam-packed parking lots? You’d be supporting Ronald McDonald House Charities at the same time. Here’s your chance.
From November 27 through December 12, RMHC will hold an online auction. Similar to other types of online auctions, you can go online to view items and place your bids. There will be a minimum opening bid and a time duration for bidding listed. The highest bidder at the end of the bidding timeline will secure an amazing, one-of-a-kind item, including:
Some items up for auction:
Coach John Wooden autographed basketball
Cingular Wireless Blackberry 7130c
Two-night stay for two at the Marriott Miami Key Biscayne Bay
JVC DVD Home Theater System
Wayne Gretzky-autographed Campbell Conference All-Star Game authentic jersey
Sony PlayStation 2 with 6 games
Home security system featuring Westec Ineractive 8-camera IVR server and indoor dome camera system
Sony Cyber Shot Camera
Tenth anniversary Tickle Me Elmo doll
Five night stay for five couples at the Chateau de la Ligne, Bordeaux, France
And more!
To view complete auction catalogue:
To bid on auction items or for more information visit The Ronald McDonald House Auction
