This is for families in the Central & Western Nebraska areas. Make sure you read through this carefully as there is A TON of information here!!
Magnets
in iPad2 May Alter Settings on Brain Shunt Devices: Study
Effect seen only when tablet computer was within inches of the
patient's head, researcher noted
By
Maureen Salamon
HealthDay Reporter
TUESDAY,
June 26 (HealthDay News) -- Magnets embedded in the Apple iPad 2 can interfere
with the settings of magnetically programmable shunt valves, which are critical
devices to drain excess fluid from the brains of those with hydrocephalus and
other conditions, a new study suggests.
Researchers
from the University of Michigan decided to investigate the phenomenon after a
4-month-old patient with hydrocephalus was found to have a shunt malfunction
three weeks after getting one implanted. The baby's mother had fed the child
and used the iPad simultaneously, inadvertently placing the baby's head close
to the tablet computer. "Most
times, technology has helped medical care significantly. This is one case . . .
where we have to be concerned about these things," said Dr. Salvatore
Insinga, a neurosurgeon at the Cushing Neuroscience Institute in Manhasset,
N.Y., who was not involved in the study. "We do know programmable shunts
are susceptible to magnetic field fluctuations -- MRIs, for instance, can
change the settings of the shunts. [But] I don't think we know all of the
devices that have a magnetic influence on these things."
The
study is published online June 26 in advance of the August print issue of Journal
of Neurosurgery: Pediatrics.
Study author Dr. Cormac Maher, a pediatric neurosurgeon at the
University of Michigan, and his colleagues tested the iPad 2 with and without
an Apple Smart Cover, which contains additional magnets and is the most
frequently used cover for the tablet.
Exposing 10 programmable shunt valves to the iPad/cover for 10 seconds
at five different distances, Maher found that the settings changed in 58
percent of the valves at distances between 0 and 1 cm (about 0.4 inches); the
settings changed in 5 percent of valves when the exposure distances lengthened
to between 1 and 2.5 cm (up to 1 inch). After exposure at distances between 2.5
and 5 cm (1 to 2 inches), the settings changed in just 1 percent of shunt
valves; no changes were observed at higher distances.
"Once
we know a valve is dialed to an incorrect setting, it's easy to set back,"
Maher said, noting that his infant patient suffered no lasting effects.
"The impact could potentially be serious if [the changed setting] is not
recognized -- there could be complications from overdraining or
underdraining."
Repeated
calls to Apple headquarters in Cupertino, Calif., for comment on the findings
were not returned.
Maher
and other experts cautioned that those with programmable shunt valves, as well
as their parents and/or caregivers, should be aware that an iPad placed within
a couple of inches of patients' heads could produce such an effect. “If a child uses an iPad, that's OK; they
just shouldn't hold it near their head or sleep with it," Maher advised.
"Routine use should be OK, people just need to be smart about it." Dr. Jonathan Zhang, a neurosurgeon at
Methodist Neurological Institute in Houston, recommended that more research be
done to confirm a cause-and-effect between the iPad and programmable shunt
valves. "This is certainly a very
intriguing and interesting finding," Zhang said. "As we use more and
more technology, the world is changing and we certainly need to incorporate new
findings into clinical practice. This is a cautionary tale."
Copyright
© 2012 HealthDay.
All rights reserved.
Learn to Adapt Toys to Use with
a Switch/Button/BigMac
This
workshop is for anyone! You will learn how to easily &cost effectively turn
the toys that your child already has, & isn’t using due to physical
limitations, into toys that are adapted to your child! You will learn how to install a jack into a
single function toy & convert into a toy that is operated with a
switch. You will learn how to assemble a
switch. You will make a detachable cord
that runs from the toy to the switch, and best of all your child’s toy will
look professionally adapted, by YOU!!
You have seen that the switch operated toys are sometimes as much as 8x
as much to order, than if you could buy the toy & parts & put together
yourself. This class is FREE, however
donations of any kind are appreciated. Contact Aaron today at aaronmiller555@gmail.com for more information!!
A & D Waiver – Aged &
Disabled Waiver HIPP Program
If your
child is on this waiver, do you know that it makes your income guidelines
non-existent? No cap on your
income. Just have to use a minimum of 2
hours of respite each month. Do you know
that you can then add your child, to your private health insurance
(non-medicaid), and then you can get those premiums paid for through the HIPP
program? If the child is on your family
health insurance policy, they cover the entire premium for your family!!! If your child isn’t on this, I would contact
your DHHS coordinator to find out if this is an option for your child. I know that if your child is fed via
g-button, j-button more than I think 50% of their daily intake, or have a
catheter, these are both automatic qualifiers for kids. If you want more information I would contact
your Services Coordinator, if you need help getting answers let me know and we
can work through it together! This is a
wonderful opportunity for those families, who have kids on the A&D Waiver
or could be there. Let’s get the word
out about this program!! Contact me at ohanakidsnews@gmail.com for more information.
Parent Group – Kids with
combined hearing & vision loss
The
Nebraska Technical Assistance Project on Deaf-Blindness has conducted training
this year specific to parents of children who have a combined hearing &
vision loss. The training has been in
partnership with the National Consortium on Deaf-Blindness (NCDV2.0). A total of 7 parents have participated in a
series of training activities from May 2011 through October 2011. They are now working on their leadership
goals. They are called the Nebraska DB
Parent Leadership Team, & have provided lots of support to the state
Deaf-Blind project. It is the intent of
this team to provide one-on-one interaction either via phones, technology or
face-to-face with other parents in the state who have a child birth to age 21,
with a combined hearing & vision loss.
If you want to be connected to
one of the parents, please contact Teresa Coonts at 402-595-1810 or Teresa.coonts@nebraska.gov
This is an exciting group of parents working & learning together for
the purpose of supporting other families in the future.
Bikes and Trykes of Central
Nebraska
We are
a local chapter of AMBUCS, a national service organization composed of a
diverse group of men and women dedicated to creating mobility and independence
for people with disabilities. Our
mission is to provide AmTrykes for area children and adults with disabilities,
who otherwise would not be able to ride a bike or tryke. We are dedicated to “Celebrating the
Abilities of People with Disabilities”.
Our chapter representative is a 4 year old boy with Cerebral Palsy, his
name is Jaden. Jaden has a twin brother,
Kaden, who does not have any disabilities.
When their family went on bike rides, Jaden had to be pushed in a
stroller, which usually caused many tears.
Jaden didn’t understand why Kaden got to ride a bike, and he had to be
pushed in a stroller. Jaden was fitted
for an AmTryke and he now gets to ride along, so he can be just like his
brother. The AmTryke has not only helped
Jaden’s self-esteem, but it has also increased his muscle tone, coordination,
muscle strength and balance. If you know
of someone who would benefit from an AmTryke please have them contact us. We are also requesting help from you so we
can help other children like Jaden. When
a disabled individual receives the gift of an AmTryke, the whole family
benefits. If you would consider donating
toward an AmTryke, please contact us also. We are located at 3004 West Faidley
Avenue, GRAND ISLAND; 308-398-5170 or centralnebraskaambucs@gmail.com
You can also check out the website www.ambucs.org
Radio Show by Adult with
Asperger Syndrome
“Parents
Corner” is a radio show, co-hosted by Brian King, LCSW. Brian is an adult with Asperger Syndrome, who
also has 3 boys on the ASD spectrum.
Brian will be sharing his parenting strategies and discussing them with
a panel of parents. Here is a link with
all the details you’ll need to tune in & call in if you’d like. http: tinyurl.com/3gm58h7 Check it out & pass it along. His address is: PO Box 994, Chicago, IL 60186
if you’d like to write to him.
Heart Heroes Capes for kids
with CHD, a Nebraska Non-Profit
Every
year, approximately 40,000 infants are born in the US with Congenital Heart
Defects (CHD). CHD is the most
frequently occurring birth defect & the leading cause of birth-related
deaths. More than 50% of children with
CHD will require at least 1 invasive surgery in their lifetime. In the US, twice as many children die from
CHD each year, than all forms of childhood cancers, combined! Needless to say, the survivors of CHD wear
their scars, like badges of honor. They
are our “Heart Heroes”. Heart Heroes,
Inc., is a non-profit organization that originated by a few Nebraska moms, who
had children with CHD. After trying to
coax their children through cardiology appointments & heart surgeries, they
took comfort in the wondrous powers of “super hero” capes to comfort their
children, & Heart Heroes was founded!
Now hundreds of Heart Hero capes have been draped around the little
shoulders of CHD children everywhere.
Consider donating a Heart Hero Cape to a child with CHD by going to www.heartherocapes.com to donate a cape.
There is a perpetual wait list of children who need their capes to
conquer their fears & give them courage.
You can also join our Heart Heroes Facebook Group to see pictures of
many of the cape recipients & hear their stories. Contact the Co-Founders of Heart Heroes at heartheroes@yahoo.com. “Children hold our hands for a moment, but
our hearts forever.” ~Anonymous
Exceptional Parent Magazine
This is
a magazine for parents of children with developmental disabilities & other
special needs. You can get a digital
edition of this magazine, just go to www.eparentdigital.com type in the EMAIL: 155rw@eparnet.com & use the PASSSWORD: specialneeds to access editions digitally.
Handmade Gowns, IV Covers,
G-button covers & more!!!
Check
this out!! If you have a child who is routinely in the hospital for various
things (like mine is J) then you need to check this lady out!! Go to www.tubiewhoobies.com or you can visit them on
Facebook at www.facebook.com/tubiewhoobies
Gluten Free/Casein Free Diet
Website
Just
received this information that a parent went through and put their information
into a website of all the diet
information they have for gluten free/casein free. I haven’t checked it out, but take a
look. It is http://www.lincolntent.com/GFCF.html
Financial Resource for Families
– FirstHand Foundation
This is
a resource for families with uncovered medical needs for their children. Families can apply for individual financial
assistance if they meet the Foundation’s eligibility criteria. Check it out at www.firsthandfoundation.org
Collaborative Corner on
Mosaic’s website
Check
out the Collaborative Corner on Mosaic’s website at www.mosaicinfo.org/services/research/CollaborativeCorner.htm Resources and publications are updated
regularly. Please contact Tara Harper at
tara.harper@mosaicinfo.org if you have any questions or
need additional information!
Villa
Marie Home and School for Exceptional Children
Villa Marie Home and School for Exceptional
Children provides a loving, home-like atmosphere for up to 22 children, both
day students and boarders. Students
enjoy comfortable dormitories (4 students to a room), excellent recreational
facilities, a chapel and spacious grounds.
The Villa Marie staff provides total 24 hour-a-day supervision. Villa Marie follows the Lincoln Diocesan
Catholic School calendar. The school has
3 well-equipped classrooms, a library, up-to-date computers, a Smart Board in
each classroom and a variety of audio/visual aids. Villa Marie is approved by the Nebraska
Department of Education and all teachers are certified in Special
Education. The developmental program at
Villa Marie works towards preparing students to function effectively in social
situations, to live independently, & to use their skills in productive
employment. Specific areas of
development include social and emotional development, vocational training,
appearance, health and hygiene, and community involvement. Requirements for attendance are: Children with special needs between the ages
of 7 & 18 but no students older than 16 will be accepted as new students,
Students must be on an Individual Education Plan (I.E.P. & not require
one-on-one paraprofessionals, Three step process for entrance (1. Parent
interview, 2. Student visit during school, 3. Application for entrance
including tuition negotiation) For
More Information on Villa Marie Home and School Contact Sister Peggy Kucera,
Principal at 402-786-3625 or
Parent 2 Parent Mentor’s Wanted!!!
Nationally
over 80% of parents of children with disabilities, who were mentored by an
experienced parent, reported it to be the most helpful source of information o
coping with the challenges of raising a child with special needs. Mentored parents report that the support of a
fellow parent was so unique & personalized that it could not have come from
any other source! As the mother or
father of a child with developmental disabilities, you have unique parenting
experiences. Through time, training,
& trial & error, you have gained valuable skills. Use your knowledge to
help another parent on the journey by becoming a mentor. Parent to Parent (P2P) programs link parents
of children, adolescents & adults with developmental disabilities together
with experienced & informed veteran parents who understand the day-to-day
experiences of raising a child with special needs. Parent to Parent Omaha is offered by Ollie
Webb Center, Inc., a local non-profit agency.
We are seeking parent mentors who are coping well with their child’s
situation & view him or her as a valuable & developing person. Consider becoming a mentor if you’d like to
help parents cope with the joys & challenges of having a child (of any age)
with special needs. The time commitment
involves contacting another parent (in person, by mail, e-mail or telephone)
once every 2 weeks within the first 8 weeks, & as mutually agreed
thereafter. You have the knowledge &
experience. We provide the training as a
framework to share your wisdom. The next
training will be held soon & will include:
Guidelines for Helping Families; Creative Coping Skills &
Resiliency; Survival Tactics for Parents of Children with Special Needs; What
Helps Families in High Stress Situations & Crisis; Tips for Extended Family
& Siblings; Tips for Locating Community Services; Information on Parent to
Parent USA; Cultural Competence &
Family Centered Care; & Principles of Family-Professional Collaboration. (4/2012)
Tech Tots & Tech Tools
Programs Sponsored by UCP
The
Tech Tots Lending Libraries provide developmental toys, adapted toys and
devices to children with developmental and physical disabilities, at no cost to
families. UCP of Nebraska offers over
700 adapted toys & technologies for children and teens through 4 locations
(listed below). The toys are housed in
libraries located in respite or rehab services environments. Primary use of the program is through families
that use services at the center, and is also available to the general
public. The toys are available to be
taken home to reinforce learning. We
have heard from families that have participated in this program consistently
and the value it has brought to them.
After one family in particular, has been using the program by taking 3-4
items home for their child with Cerebral Palsy.
After a month of using these items, they return the items and “refresh”
them with something new and interesting.
It has helped increase the exposure and learning for that child by
continually offering new tools. These
same adapted toys are cost-prohibitive to many families, as they typically cost
more than 5 times the base cost of the toy without adaptation. UCP has partnered with AT4ALL to make the
entire inventory visible online. AT4ALL is offered by the Assistive Technology
Partnership. A family can view the
items, request them for loan, and then simply pick them up at the location. Simply go to www.AT4ALL.com,
click on “Children’s Equipment” in the category. All items available for checkout from UCP of
Nebraska Tech Tots Partners (& a few other agency programs) will come
up. You can refine the search by
location by selecting one of the UCP of Nebraska sites. Under Programs, scroll down to find the UCP
Tech Tools locations. Children’s adapted items available through other agencies
can also be found on this website!
Locations for
Tech Tots and Tech Tools:
Children’s
Respite Care Center NW, 2010 N. 88th Street, OMAHA 402-496-1000 ask for Sarah Tselentis
Children’s
Respite Care Center SW, 13336
Industrial Rd, Ste 101, OMAHA 402-895-4000 ask for Sarah Tselentis
Madonna
Rehabilitation Hospital, 5401 S. Street, LINCOLN 402-486-8617 ask for Michelle
Wiggins
Children’s
Rehab Center, 3004 W. Faidley Avenue, GRAND ISLAND 308-398-5170 ask for Carole
Ostdiek
Faith
Regional Health Services Rehab Services, 1500 Koenigstein, NORFOLK 402-644-7348
ext. 7396
Ask for
Nikki Fischer
TOP TEN STRESS REDUCERS:
1) Don’t rely on your memory. Write down appointment times, when to pick up
the kids, what to bring to the picnic, when the movies are due back, what to
take to therapy, when to make a phone call, etc.
2) Ask yourself --- why am I
procrastinating on this ____? If you can
figure out why you are putting something off, you can overcome it. You can also determine if this is really an
activity that needs to be on your to do list
. . . .
3) Don’t press your luck! If you
are too busy to make that doctor’s appointment, get that tire fixed, etc. What
could be the outcome if you don’t do that? Remember the proverb, “A stitch in
time saves nine.”
4) Turn wait time into bonus time.
Waiting is a fact of life – what we do while we wait is a choice. Have something to read, or a call to
make? Take in some deep breaths, and
enjoy a moment without criticism and negative talk. J
5) What little things constantly
aggravate you that could be fixed/replaced with little effort – a broken zipper
– shoe laces – coffee pot – closet shelf . . . STOP the insanity – fix it, get
rid of it or replace it!!
6) Stop working and take a lunch
break, even if it is only 15 – 20 minutes.
It will clear your mind.
7) Give yourself permission to
temporarily disconnect. Turn off your
cellphone or other electronic devices at a specific time and allow yourself the
freedom to relax without the bleeps and rings and compulsion to see who/what it
is requesting your time.
8) Simplify, simplify,
simplify. Is a store bought dessert really
that big of a deal?
9) Ask for help --- Ask for help,
Is Aunt Mary’s potato salad really that bad?
10) Get the ugly out! If you are having a difficult time with
something, find a trusted friend you can talk with about it and get it out and
begin finding a solution rather than replay it over and over in your mind.
Remember
when you were a kid and you looked forward to lazy days where the biggest worry
was who you would play with that day? Find that kid inside and give yourself
permission to play for a few minutes today!
Article provided by Ruth Hamlin,
“Powerful Tools for Caregivers”
“Love That Goes the
Distance” Providing for special needs
now & into the future! Planning for the long-term care of a loved one with
special needs requires thought and preparation.
The fact is, when it comes to the future needs of a family member with a
disability, the possibility that they nay outlive you is something that must be
considered, especially when the individual is a minor or adult child. Preparations include estimating possible
future care-giving costs, as well as making sure all assets are managed
properly to best benefit your loved one.
Special protection when you need it most! Sometimes families neglect inheritance issues
for special needs family members because they assume siblings or related
caregivers will simply step in and take over the care giving duties should the
need arise. Even if families have
reached an agreement on care giving responsibilities, it is still important to
address the management and division of assets and to have your preferences
clearly and legally defined. You also
want to be sure you understand all of the legal guidelines so that your loved
one with special needs does not lose benefits from government sources. For instance, many people are not aware
of that with Supplemental Security
Income (SSI), a singe disabled person
cannot own more than $2,000 in assets.
One component you might want to
consider when setting up your long-term financial plan is the establishment of
a “Special Needs Trust” funded with a form of life insurance. A “Special Needs Trust” is established to
ensure that the disabled individual’s inheritance will supplement, not replace,
any government assistance programs they may be eligible for. Aspects of a “Special Needs Trust”
include: Appointing someone to take care
of your loved one’s property and money, Designating a guardian for children
less than 18 years of age, Integrating
the wishes spelled out in the trust with the remainder of the parent’s estate
plan. Get the help you need now for
future peace of mind. A “Special Needs
Trust” is just one tool that can help you address financial issues making life
much easier for your loved one and their future caregivers. With proper planning, your love and your
money, will be set to go the distance.
For additional information on “Special Needs Trusts” it is important to
consult with an attorney in your state of residence who specializes in special
needs estate planning. For
more information on preparing for your loved one with special needs’ future,
you can contact Cecilia Loose, Prudential at Cecilia.losee@prudential.com 402-861-3676
.
JOB OPPORTUNITY: On Call
Driver Needed by NeuroQUest LLC
NeuroQuest, LLC is an in home EEG
service that works with patients all across Nebraska. The laptop & video camera are provided to
the patient so they can record their seizure activity while in the comfort of
their own home. Once the in home
recording is completed, the equipment needs to be picked up & FedEx’d back
to NeuroQuest for review. NeuroQuest is looking for reliable
individuals who can drive to pick up the equipment & get it to the FedEx
office for shipping. They are paying $15
per hour, plus the cost of fuel to pick up the equipment & drop it off at
the FedEx location. This would be an on
call position, when they call then you go pick it up. Reliability is a MUST. If you
are interested in applying for such a position, please contact Christy Norton
at cnorton@neuroquestllc.com
Sure Steps SMO Orthotics
Sure Steps makes tennis shoes that
are made to fit SMO’s. Contact them at www.suresteps.net for more information.
Advocacy Page for Parent’s of
Children with Disabilities
Now
parents are invited to check out a page on Mosaic’s website www.mosaicinfo.org/services/research/CollaborativeCorner.html make sure you check out this
new resource available to all our families
Wrist
Sensors For Epilepsy Could Alert Patients That They Need To Seek Medical Care
In this week's issue of the journal Neurology, researchers at MIT and two Boston hospitals provide
early evidence that a simple, unobtrusive wrist sensor could gauge the severity
of epileptic seizures as accurately as electroencephalograms (EEGs) do - but
without the ungainly scalp electrodes and electrical leads. The device could
make it possible to collect clinically useful data from epilepsy patients as
they go about their daily lives, rather than requiring them to come to the
hospital for observation. And if early results are borne out, it could even
alert patients when their seizures are severe enough that they need to seek
immediate medical attention.
Rosalind Picard, a professor of media arts and
sciences at MIT, and her group originally designed the sensors to gauge the
emotional states of children with autism, whose outward behavior can be at odds
with what they're feeling. The sensor measures the electrical conductance of
the skin, an indicator of the state of the sympathetic nervous system, which
controls the human fight-or-flight response.
In a study conducted at
Children's Hospital Boston, the research team - Picard, her student Ming-Zher
Poh, neurologist Tobias Loddenkemper and four colleagues from MIT, Children's
Hospital and Brigham and Women's Hospital - discovered that the higher a patient's
skin conductance during a seizure, the longer it took for the patient's brain
to resume the neural oscillations known as brain waves, which EEG measures.
At
least one clinical study has shown a correlation between the duration of
brain-wave suppression after seizures and the incidence of sudden unexplained
death in epilepsy (SUDEP), a condition that claims thousands of lives each year
in the United States alone. With SUDEP, death can occur hours after a
seizure.
Currently, patients might use a range of criteria to determine
whether a seizure is severe enough to warrant immediate medical attention. One
of them is duration. But during the study at Children's Hospital, Picard says,
"what we found was that this severity measure had nothing to do with the
length of the seizure." Ultimately, data from wrist sensors could provide
crucial information to patients deciding whether to roll over and go back to
sleep or get to the emergency room.
Surprising
signals
The realization that the wrist sensors might be of use in
treating epilepsy was something of a fluke. "We'd been working with kids
on the autism spectrum, and I didn't realize, but a lot of them have
seizures," Picard says. In reviewing data from their autism studies,
Picard and her group found that seizures were sometimes preceded by huge spikes
in skin conductance. It seemed that their sensors might actually be able to
predict the onset of seizures.
At the time, several MIT students were working
in Picard's lab through MIT's Undergraduate Research Opportunities Program
(UROP); one of them happened to be the daughter of Joseph Madsen, director of
the Epilepsy Surgery Program at Children's Hospital. "I decided it was
time to meet my UROP's dad," Picard says.
In a project that would serve as
the basis of Poh's doctoral dissertation, Madsen agreed to let the MIT
researchers test the sensors on patients with severe epilepsy, who were in the
hospital for as much as a week of constant EEG monitoring. Poh and Picard
considered several off-the-shelf sensors for the project, but "at the
time, there was nothing we could buy that did what we needed," Picard
says. "Finally, we just built our own."
"It's a big challenge
to make a device robust enough to withstand long hours of recording," Poh
says. "We were recording days or weeks in a row." In early versions
of the sensors, some fairly common gestures could produce false signals.
Eliminating the sensors' susceptibility to such sources of noise was largely a
process of trial and error, Picard says.
Blending in
Additionally, Poh says, "I put a lot of thought
into how to make it really comfortable and as nonintrusive as possible. So I
packaged it all into typical sweatbands." Since the patients in the study
were children, "I allowed them to choose their favorite character on their
wristband - for example, Superman, or Dora the Explorer, whatever they
like," Poh says. "To them, they were wearing a wristband. But there
was a lot of complicated sensing going on inside the wristband." Indeed,
Picard says, the researchers actually lost five of their homemade sensors
because hospital cleaning staff saw what they thought were ratty sweatbands
lying around recently vacated rooms and simply threw them out.
Picard is
continuing to investigate the possibility that initially intrigued her - that
the devices could predict seizures. . . . . References:
Written by Larry Hardesty, MIT News
Office
Massachusetts Institute of Technology. Web.
3 May. 2012. <http://www.medicalnewstoday.com/releases/244679.php> 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.
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