Posts Tagged ‘Cerebral Palsy’

FES Equipment Coming to Baltimore’s Mount Washington Pediatric Hospital

Thursday, September 8th, 2011

Author - Sarah Keogh

Back in February, Jon Stefanuca wrote about a study in the Journal of Neurorehabilitation and Neural Repair about Functional Electrical Stimulation (FES) and the benefits it can provide to those individuals who have suffered spinal cord injuries. He explained how FES is able to provide electrical impulses to stimulate paralyzed muscles. The study’s authors found improvements based on using FES that led them to recommend using stimulation therapy in conjunction with occupational therapy for patients with incomplete spinal cord injuries. This technology is now also being used to help people with a wide range of injuries and illnesses including, stroke, multiple sclerosis, traumatic brain injury, and cerebral palsy, in addition to spinal cord injuries. According to the Christopher and Dana Reeves Foundation website, FES works by applying “small electrical pulses to paralyzed muscles to restore or improve their function”. The benefits can be extensive:

FES is commonly used for exercise, but also to assist with breathing, grasping, transferring, standing and walking. FES can help some to improve bladder and bowel function. There’s evidence that FES helps reduce the frequency of pressure sores. From: Christopher and Dana Reeves Foundation website

Improved Technology To Be Locally Available

Since FES was originally developed, the technology improved from being something that was typically integrated into large expensive equipment, such as exercise bikes and wheelchair based equipment, into smaller more portable devices. The good news for individuals with neuro-motor injuries in Baltimore City and the surrounding areas is that this type of FES treatment is about to become more available locally. At the end of August, Mount Washington Pediatric Hospital announced that they have received a “Quality of Life” grant from the Christopher and Dana Reeve Foundation. The article explains:

The money will help Mt. Washington Pediatric Hospital purchase Bioness® equipment for its Adaptive Equipment Rehabilitation Clinic (the clinic). The clinic works with patients with neuro-motor disorders to maximize their movement as much as possible given their physical limitations.

From Bioness.com

The Bioness website explains that they produce a variety of “medical devices designed to benefit people with Stroke, Multiple Sclerosis, Traumatic Brain Injury, Cerebral Palsy, and Spinal Cord Injury. These products use electrical stimulation to help people regain mobility and independence, to improve quality of life and productivity.” While I do not know what particular equipment will be available at the Mount Washington Pediatric Hospital, Bioness makes equipment to assist patients with hand paralysis, foot drop and thigh weakness among other conditions.

MWPH Uses Interdisciplinary Approach Combining FES and Therapy

The article about the grant explains some of the many wonderful things available for patients at the Mount Washington Pediatric Hospital (MWPH):

  • …[an] interdisciplinary approach to the assessment and management of adolescents and children with neuromuscular impairments, paralysis and/or movement disorders
  • … [a] team of 21 experienced specialists in physiatry, occupational therapy, and physical therapy.

The new equipment at MWPH will be used along with the other occupational and physical therapy options available to patients. A study described in US Neurology looked at stroke victims and found the combination of FES and traditional therapies that include repeated motion provide the best results:

Stroke patients with limited voluntary movement could now benefit from technologies such as functional electrical stimulation (fes) combined with necessary repetition of functional tasks (use-dependent plasticity) to enhance the neural repair process and improve outcomes, thus enabling them to begin to overcome their previous limitations and to improve their physical capabilities.

From Bioness.com

The goal at MWPH for children and adolescents is based on a similar idea:

Patients whose muscles can be retrained will require several months of therapy to gain normal range of motion and strength. For those patients with more severe conditions where muscles cannot be retrained, the Bioness® equipment will be used to augment their range of motion. Using these two therapy modalities, patients will acquire greater functionality, range of motion, muscle strength, and the ability to move independently.

This multi-disciplinary approach should allow these children and teens to have the best chances of improved motor use and the most independence in their future lives.

Related Articles:

Coming Soon? Restored Breathing for Spinal Cord Injury Patients

Spinal Cord Injury Updates: More Reasons for Optimism?

New Treatment Holds Promise for Patients With Spinal Cord Injuries

New Microchip Promises to Make Life Much Easier for Paraplegic Patients

Week in Review: (June 6 – June 10, 2011) Eye Opener Health, Law and Medicine Blog

Saturday, June 11th, 2011

 

A Word of Special Thanks…

From the Editor:

I am so grateful to my bloggers and friends at the firm for all their hard work this week. I started a  multi-week trial this past Tuesday, but in my absence, the Eye Opener kept rolling right along thanks to them. Special thanks to Jason Penn, who took over the task of making sure the schedule was kept and the blogs got posted.

Brian Nash

 

From Jason Penn -

It is time to take a look back at the week that was.  With the temperatures soaring in the Baltimore-Washington area, the Eye Opener did its best to keep pace with the thermometer.  Five posts, five days.  All while the lawyers prepared for upcoming trials.  Not too shabby, if you ask me.  Without further ado, lets take a look at retrospective look:

The Death of a Baby – Economic Realities

By: Michael Sanders

The loss of a child, particularly an infant, is one of the most difficult and painful horrors anyone could every have to deal with.  Writing about it isn’t much easier.  Nonetheless, on Monday, blawger Michael Sanders’ post provided insight into the economics of lawsuits involving the death of an unborn child.  It is truly a “must read” for anyone that is contemplating taking legal action for the loss of their child.  The interplay between gestation, age of death and so-called “survival actions” is particularly tricky.  Mike lays out Maryland’s law on the topic and gives helpful primer for parent and practitioner alike.  Read more

Can A Simple Image Guide Nutrition?

By: Sarah Keogh

Obesity in America, particularly among our youth is a serious problem.  The problem itself certainly isn’t new but the approaches to promote healthy eating certainly have been. On Tuesday, Sara Keough pulled up to the table and reviewed the new MyPlate image and its impact on America’s unhealthy eating habits.  As I am sure you know, there have been a variety of methods to improve our nation’s eating habits. In most recent memory is the ostracized food pyramid and the First Lady’s “Let’s Move Campaign” (and associated dance moves). Sara provided her perspective on the new eating tool as both an individual and a parent.  I personally am curious: for the parents out there, will this change the way you handle your children’s nutrition?  Read more

Legal Boot Camp (Class Three): Sean and Kristy’s Story – Wrongful Death and Survival Actions

By: Jon Stefanuca

On Wednesday, Jon Stefanuca provided the third installment of our Legal Boot Camp. With class in session, Jon presented the following scenario:  Last month, Sean turned 24.  He and Kristy are married. Their daughter, Kira, is 2-years old. Sean just entered medical school. Kristy’s parents support them, while Sean is in school.  Sean has never held a job.  Kristy is a stay at home mom. A month ago, Sean was driving home when a drunk driver pushed him off the road. In the accident, Sean broke his sternum. He also sustained a number of vascular injuries, which caused internal bleeding. He was rushed to the nearest hospital. Soon after his arrival, Sean underwent surgery to stop the bleeding.

Sean was recovering beautifully. Unfortunately, on his third day in the hospital, he developed rapid breathing, shortness of breath, and his chest pain got worse. A CT scan of the chest revealed that Sean had a pulmonary embolism. The physician ordered 100 mg of anticoagulation medication.  The nurse misread the order and made a mistake in its administration. The overdose caused Sean to have extensive bleeding. Sean was scheduled for discharge within the next 3 days. Instead, he died within a few hours.

What legal action could Kristy take?  Read more

Dealing with Cerebral Palsy: A Resource for Parents and Family (Part II)

By: Jason Penn

On Thursday, Jason Penn provided us with Part II of his series “Dealing with Cerebral Palsy:  A Resource for Parents and Family.”  Part II of the series takes a look at educating children with cerebral palsy.  Children that have special needs that impact his/her ability to learn at school often qualify for an Individual Education Plan.

An IEP is a legal document created to ensure your child’s teacher, staff and administration understands his learning and other limitations and utilizes the best practices to ensure that he gets the education that he/she deserves.  Curious about an IEP?  Read more

How Much Is Your Marriage Worth?

By: Michael Sanders

To finish up the week, Michael Sanders returned, and asked the question: What is Your Marriage Worth?  If you’re married, there is category of damages that you may be able to recover – damage to your marriage. It’s called Loss of Consortium and is an important element of damages in the right circumstances. It is a legal recognition that the marital relationship itself – separate and apart from the injury to the individual – is a protected interest that is deserving of compensation if it has been harmed by the negligence of another person.  Read more…

Sneak Peak of the Week Ahead:

With the weather taking a turn for the better (hopefully), and the local sports teams showing renewed vigor, we are going to keep up the pace. As you finish up this week, and turn to the next, you can look forward to the following:

  • Service dogs for children:  more than just a pet
  • Subdural Hemorrhages – “Man, is my head aching…”
  • HIV Patients:  Increased risk for developing cancer
  • Crib bumpers & safety
  • Legal Boot Camp is back in session and Part III of our Cerebral Palsy tutorial.

Have a safe weekend, Everyone!

Week in Review: (May 22 – 28, 2011) The Eye Opener Health, Law and Medicine Blog

Saturday, May 28th, 2011

From the Editor – Brian Nash

Last week’s posts by our blawgers were packed with information about a variety of topics ranging from the medicine you need to know about concussions, living with cancer, cerebral palsy resources and the potential risks of overdosing your child with medications.

On the legal front, we began a series I’m personally excited about. We call it Legal Boot Camp. It will be a series for those in our practice jurisdictions of Maryland and Washington, D.C. Our teacher’s face is on – lesson plans in place. We hope you learn some things about the laws that can affect your lives in the areas of personal injury – particularly medical malpractice law.  Our first class took place with a piece by Sarah Keogh that examines the law in Maryland on the right to claim loss/diminished earning capacity. If you’re wondering if you can have such a claim even if you weren’t working when you were injured, Sarah has some information for you. Check it out. Turn in your class card and have some fun.

We wrapped up the week with a piece by yours truly on a wonderful community outreach program by our local baseball heroes, the Baltimore Orioles. Aptly named – OriolesREACH, this initiative has a number of wonderful events, charities and missions that are worth knowing about. One in particular, Shannon’s Fund, is a great program to help those in need while dealing with the financial burdens while dealing with cancer. It is run by the University of Maryland Medical Center. Read about our challenge to our brethren before the bar in the Greater Baltimore Area.

Without further ado, here are the blogs we posted this past week …. and a sneak peak of the week ahead.

Concussions: The Message of Brian Roberts’ Injury Should Not Go Unheeded

Posted by Brian Nash

Anyone who follows sports is well aware that finally the old school mentality of “gut it out and get back in there” following blows to the head are coming (not too soon) to an end. Committees have been formed, articles written and the national spotlight of the media have finally focused on this issue. Those recommendations, debates and guidelines are beyond the scope of this post. Nevertheless, those involved in sports…Read more >

Children’s Medications: Coming Changes and Tips to Avoid Overdose

Posted by Sarah Keogh

My children are both young; the youngest is now a little past her second birthday. In the last few years, we have had both infant and children medication in the house, liquid and tablets, and I have been very careful to make sure to double-check myself if I ever have to medicate either child to make sure that I am reading the correct dosing matrix for the correct concentration and for the correct child. More often than not, I have found that children need medication when their parents are tired. As parents know – children frequently…Read more >

 

Living With Cancer: What to Expect After the Diagnosis

Posted by Jon Stefanuca

About a million and a half people will be diagnosed with cancer in the U.S. this year. The devastating truth about cancer is that about one-third of these people will die from cancer at some point. For most, the diagnosis is unexpected and completely overwhelming.The cancer does not just affect how one feels, it undermines all sense of security and stability. It changes lifestyles and redefines relationships. So often the emotional trauma is equally shared among family members and loved ones. Read more >

New Blog Series: Legal Boot Camp

Posted by Brian Nash

I’m really pleased to announce a new series we’re starting today. If you’re a reader of our blog, you know that we post numerous times a week on health, safety, medicine and related law topics. That’s what we do in our firm – we represent people who are injured by the negligence of health care providers and those who suffer catastrophic injuries in non-medical settings as well. So, sharing what we believe is some good information about medical, health and safety issues is our mission. We strongly believe that our social networking should be about giving good information, engaging in dialogue about relevant issues – just plain good, old sharing. Read more >

Legal Boot Camp (First Class): The Story of Pam – Maryland’s Law on Loss of Earning Capacity

Posted by Sarah Keogh

A 41-year-old woman, Pam, who was laid off from her job as a swimming instructor and swim coach in December of 2009, has been struggling to find a new position for the last few years. Even though Pam had been working as a swimming instructor full-time for the past 18 years, she felt that she needed to jump into a new career while waiting to find a new position as a swimming instructor and coach. Starting in October of 2010, her father died leaving her a rundown home that he had recently purchased with the intent of renovating it. Pam felt that she could put her physical fitness and knowledge of home aesthetics to work, not to mention the ideas she picked up watching renovations shows while unemployed, by renovating the home her father left… Read more >

Dealing with Cerebral Palsy: A Resource for Parents and Family

Posted by Jason Penn

Today’s society has become increasingly dependent on aggregators. We use a variety of methods to assemble and sort information so that we can easily consume it.  Mint.com and Quicken help with our finances and Google Reader helps to manage our online content. A quick search of the internet suggests that the parents of children withcerebral palsy do not yet have an objective aggregator of information to turn to.  Let’s consider this our attempt to provide parents in the Baltimore and Washington D.C. areas with a place to turn. Read more >

Charity Begins at Home: OriolesREACH Program Hits a Grand Slam with Us!

Posted by Brian Nash

I recently wrote a post about our local area charities and civic organizations who do so much for so many in our community. With that in mind, as I was happily reading the sports page in the warm glow of the Orioles’ 12th inning victory yesterday (5 in a row – Go O’s), I came across a piece about a new initiative for our military personnel by the Birds. While looking at the details of this worthy program, I noticed (ashamedly for the first time, I admit) a host of community programs being run by the Orioles. The team uses the name OriolesREACH for the community programs they sponsor, promote or fund. Read more >

Sneak Peak of the Week Ahead

Here’s a sampling of what’s coming next week on The Eye Opener: Views and Opinions from the Nash Community:

  • As families prepare for the upcoming holidays and summer vacation, Theresa Neumann has some important medical advice about what else needs to be included in your travel plans.
  • Legal Boot Camp: Prepare for our second class – get those pencils, pens, iPads and whatever else you need out and ready – there could be a pop quiz on next week’s primary on law.
  • What rights do babies-before-birth (fetal rights) have in our legal system? Do parents who lose a child just before birth have any rights of recovery? You’ll find out next week.
  • Home births are on the rise. Is that a good or a bad thing? Sarah Keogh weighs in on that issue in the coming edition of The Eye Opener

And….maybe even more to come…you can never tell….

Have a wonderful and safe Memorial Day Weekend. Best to All of You and Your Families and Friends from All of Us at Nash & Associates

Dealing with Cerebral Palsy: A Resource for Parents and Family

Thursday, May 26th, 2011

Today’s society has become increasingly dependent on aggregators. We use a variety of methods to assemble and sort information so that we can easily consume it.  Mint.com and Quicken help with our finances and Google Reader helps to manage our online content. A quick search of the internet suggests that the parents of children with cerebral palsy do not yet have an objective aggregator of information to turn to.  Let’s consider this our attempt to provide parents in the Baltimore and Washington D.C. areas with a place to turn.

This is Part I of a several part series.  As we continue to provide you – our readers—with information, if there is anything that would prove helpful, please do not hesitate to let us know.

Here is the roadmap for our journey:

Part I:  Introduction:  You are not alone

Part II:  Education for your child.

Part III:  Medical Information for Parents

Part IV:  Cerebral Palsy Treatments and Therapies

Part V:  Legal Rights & Help

What is Cerebral Palsy?

httpv://www.youtube.com/watch?v=KRljnQTEBMo

Cerebral Palsy is a broad term used to describe a group of chronic movement or posture disorders. “Cerebral” refers to the brain, while “Palsy” refers to a physical disorder, such as a lack of muscle control. Cerebral Palsy is not caused by problems with the muscles or nerves, but rather with the brain’s ability to adequately control the body. Cerebral Palsy can be caused by injury during birth, although sometimes it is the result of later damage to the brain. Symptoms usually appear in the first few years of life and once they appear, they generally do not worsen over time. Disorders are classified into four categories:

  • Spastic (difficult or stiff movement)
  • Ataxic (loss of depth perception and balance)
  • Athetoid/Dyskinetic (uncontrolled or involuntary movements)
  • Mixed (a mix of two or more of the above)

If you are the parent of a child with cerebral palsy the most important thing that you need to know is that you are not alone. Mike Sanders recently addressed this issue in his blog entitled The Daily Struggle of Raising a Disable Child. In addition to the private resources available to you (these resources will be covered in the upcoming segments), there are significant government resources available to Maryland area parents.  Here is a quick breakdown, courtesy of cerebralpalsy.org (please feel free to bookmark this page for easy access to these valuable contacts:

GOVERNOR’S OFFICE FOR INDIVIDUALS WITH DISABILITIES

Beatrice Rodgers, Director

Governor’s Office for Individuals with Disabilities
One Market Center, Box 10
300 West Lexington Street
Baltimore, MD 21201-3435
(410) 333-3098 (V/TTY)
E-mail: oid@clark.nett

Department of Education, Division of Special Education
Early Intervention Services
200 West Baltimore Street
Baltimore, MD 21201-2595
(410) 767-0238
E-mail: cbaglin@msde.state.md.us

Web: www.msde.state.md.us

PROGRAMS FOR INFANTS AND TODDLERS WITH DISABILITIES:
AGES BIRTH THROUGH 3
Deborah Metzger, Program Manager
Program Development and Assistance Branch
Division of Special Education
Early Intervention Services
200 West Baltimore Street
Baltimore, MD 21201
(410) 767-0237; (800) 535-0182 (in MD)

PROGRAMS FOR CHILDREN WITH DISABILITIES:
AGES 3-21
Jerry F. White, Program Manager
Department of Education
Division of Special Education
Early Intervention Services
200 West Baltimore Street
Baltimore, MD 21201
(410) 767-0249
E-mail: jwhite@msde.state.md.us

STATE VOCATIONAL REHABILITATION AGENCY
Robert Burns, Assistant State Superintendent
Division of Rehabilitation Services
Department of Education, Maryland Rehabilitation Center
2301 Argonne Drive
Baltimore, MD 21218-1696
(410) 554-9385
E-mail: dors@state.md.us
Web: www.dors.state.md.us/

OFFICE OF STATE COORDINATOR OF VOCATIONAL EDUCATION FOR STUDENTS WITH DISABILITIES
Mary Ann Marvil, Equity Specialist
Division of Career Technology and Adult Learning
200 West Baltimore Street
Baltimore, MD 21201
(410) 767-0536
E-mail: mmarvil@msde.state.md.us

STATE MENTAL HEALTH AGENCY
Oscar Morgan, Director
Mental Hygiene Admin.
Department of Health & Mental Hygiene
201 West Preston Street, Suite 416A
Baltimore, MD 21201
(410) 767-6655
E-mail: morgano@dhmh.state.md.us

STATE MENTAL HEALTH REPRESENTATIVE FOR CHILDREN AND YOUTH
Albert Zachik, Assistant Director
Mental Hygiene Administration
Child & Adolescent Services
Department of Health & Mental Hygiene
201 West Preston Street
Baltimore, MD 21201
(410) 767-6649

STATE MENTAL RETARDATION PROGRAM
Diane Coughlin, Director
Developmental Disabilities Administration
Department of Health & Mental Hygiene
201 West Preston Street, Room 422C
Baltimore, MD 21201
(410) 767-5600
E-mail: coughlind@dhmh.state.md.us

STATE DEVELOPMENTAL DISABILITIES PLANNING COUNCIL
Mindy Morrell, Executive Director
MD Developmental Disabilities Council
300 West Lexington Street, Box 10
Baltimore, MD 21201-2323
(410) 333-3688
E-mail: MDDC@erols.com

PROTECTION AND ADVOCACY AGENCY
Philip Fornaci, Executive Director
Maryland Disability Law Center
1800 N. Charles, Suite 204
Baltimore, MD 21201
(410) 727-6352; (800) 233-7201
E-mail: philf@MDLCBALTO.org

CLIENT ASSISTANCE PROGRAM
Peggy Dew, Director
Client Assistance Program
Department of Education
Division of Rehabilitation Services
2301 Argonne Drive
Baltimore, MD 21218
(410) 554-9358; (800) 638-6243
Web: www.dors.state.md.us/cap.html

PROGRAMS FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS
Sandra J. Malone, Chief
Department of Health & Mental Hygiene
Children’s Medical Services Program- Unit 50
20l West Preston Street
Baltimore, MD 21201
(410) 225-5580; (800) 638-8864
E-mail: Malones@DHMH.state.md.us

STATE EDUCATION AGENCY RURAL REPRESENTATIVE
Jerry White, Program Manager
Program Administration & Support
Division of Special Education/Department of Education
200 West Baltimore Street, 4th floor
Baltimore, MD 21201
(410) 767-0249
E-mail: jwhite@msde.state.md.us

REGIONAL ADA TECHNICAL ASSISTANCE AGENCY
ADA Information Center for Mid-Atlantic Region
TransCen, Inc.
451 Hungerford Drive, Suite 607
Rockville, MD 20850
(301) 217-0124 (V/TTY); (800) 949-4232 (V/TTY)
E-mail: adainfo@transcen.org
Web: www.adainfo.org

DISABILITY ORGANIZATIONS
Attention Deficit Disorder
To identify an ADD group in your state or locality, contact either:
Children and Adults with Attention-Deficit/Hyperactivity Disorder (CH.A.D.D)
8181 Professional Place, Suite 201
Landover, MD 20785
(301) 306-7070
(800) 233-4050 (Voice mail to request information packet)
E-mail: national@chadd.org
Web: www.chadd.org

National Attention Deficit Disorder Association (ADDA)
P.O. Box 1303
Northbrook, IL 60065-1303
E-mail: mail@add.org
Web: www.add.org

Autism Society of America
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814
(301) 657-0881; (800) 3-AUTISM
Web: www.autism-society.org

Alicia Brain Injury
Brain Injury Association of Maryland
Kernan Hospital
2200 Kernan Drive
Baltimore, MD 21207
(410) 448-2924;
(800) 221-6443 (in MD)
Website: http://www.biamd.org
E-mail: info@biamd.org

Cerebral Palsy
Mitzi Bernard, Executive Director
United Cerebral Palsy of Southern MD
49 Old Solomons Island Rd., Suite 301
Annapolis, MD 21401
(410) 897-9545
E-mail: somducp@earthlink.net
Web: www.sitestar.com/ucp/

Lee Kingham, Executive Director
Epilepsy Association of MD
Hampton Plaza, Suite 1103
300 East Joppa Road
Towson, MD 21286
(410) 828-7700; (800) 492-2523 (in MD only)

Learning Disabilities Association of MD
76 Cranbrook Road, Suite 300
Cockeysville, MD 21030
(800) 673-6777

Linda Raines, Executive Director
Mental Health Association of Maryland
711 West 40th Street, Suite 428
Baltimore, MD 21211
(410) 235-1178

NAMI MD
711 W. 40th St., Suite 451
Baltimore, MD 21211
(410) 467-7100; (800) 467-0075
E-mail: amimd@AOL.com
Web: amimd.nami.org/amimd/

Cristine Boswell Marchand, Executive Director
The Arc of Maryland
49 Old Solomons Island Road, Suite 205
Annapolis, MD 21401
(410) 571-9320; (410) 974-6139 (In Balt.)
E-mail: cmarchand@thearcmd.org

Speech and Hearing
Rosalie Nabors, President
MD Speech-Language-Hearing Association
P.O. Box 31
Manchester, MD 21102
(800) 622-6742

Division of Special Education, Early Intervention Services
Department of Education
200 West Baltimore Street, 4th floor
Baltimore, MD 21201
(410) 767-0652; (800) 535-0182 (in MD only)

Parents of children in Washington D.C., part II of this series will provide you with a comprehensive list of the government-based agencies available to support your needs.   Additionally, we will take a look at the challenges faced by parents that are looking for educational resources–of all varieties– for their children.

For a primer for part II of this series, see our prior piece entitled IEP’s: Stand Up for Your Child’s rights – Be Their Best Advocate.

 

Related Posts:

CDC Features – Date Show 1 in 303 Children Have Cerebral Palsy

 

Image from hear-it.org

Birth Defect Updates: Warnings about opioid use before and during pregnancy

Monday, March 21st, 2011

Photo credit: Getty Images

Recently, I wrote about studies concerning the increased risk of birth defects caused by smoking.  A recent press release from the CDC draws attention to a newly discovered link between the use of certainly prescription opioid pain relievers by a woman shortly before conception or in the first trimester of pregnancy to an increase in birth defects.  Similar to the evidence about smoke exposure, the research identifies the period before conception and during early pregnancy as critical.  I think that these findings raise questions about the use of these drugs by woman of child-bearing age as the critical time period may be one when a woman is not aware that she is pregnant or going to become pregnant.

Use of these opioid pain relievers, such as codeine and oxycodone, “was linked to several types of congenital heart defects as well as spina bifida, hydrocephaly, congenital glaucoma and gastroschisis.”  According to the press release, the study, which was published in the American Journal of Obstetrics and Gynecology, “found that women who took prescription opioid medications just before or during early pregnancy had about two times the risk for having a baby with hypoplastic left heart syndrome (one of the most critical heart defects) as women who were not treated with these opioid medications.”   Overall the CDC statement suggests that the risk of these defects is not that large for any individual woman given the rarity of these conditions, but that it is important information nonetheless since the defects are very significant.

Cerebral Palsy rates dropping in U.S.

In happier news, overall rates of cerebral palsy are dropping in the United States.  The cause of the decline is linked to improved care during pregnancy and at birth.  According to Medical News Today, a new “…article published in The Journal of Pediatrics indicates that the rates of cerebral palsy have declined dramatically in the past 15 years.” This is exciting news not just because it means that many fewer children are born with a devastating injury but also because it is an indicator of a general improvement in the care provided to mothers and babies before, during and immediately following birth.

 

 

The daily struggle of raising a disabled child

Thursday, February 24th, 2011

Parents must cope with daily concerns of special needs children

Like many parents, I am blessed to have healthy children.  I take it for granted that my kids are smart, active, well-adjusted.  I don’t even have to think about their health other than the occasional cold or earache or sprained ankle. Others are not so fortunate.

This past weekend I was reading in Maryland Family Magazine an article about a local college professor who wrote a book about raising a son with severe autism.  After writing the book, he assumed that a major publisher would have interest. He ended up being turned down by some agents who told him that without a happy ending or a cure, there was no way they could market the story. Apparently, the public wants stories about disability to have a Hollywood ending. (A publisher finally did come along that agreed to publish the book).

This, in turn, made me think of a good friend of mine (I’ll call her Jane), who has a disabled son (autism spectrum) in addition to three normal children. I hesitate to use the words normal and disabled for two reasons:  1) we live in a politically correct world where deciding what label to apply to anything means stepping into a social minefield; and 2) on the spectrum of mental or physical ability, it can be difficult to say what exactly is normal versus abnormal. I never want to suggest that children with limitations are abnormal. Some parents even bristle at the term “disabled.” Others use the more cumbersome term “neurotypical” rather than the term “normal.” You can see that it can be hard to discuss the topic of disability when we don’t even have terms we can all agree on.

Jane and I often discuss our kids and parenting. She has been very candid with me in describing how incredibly hard it is to raise a disabled child. She believes that no one really wants to hear the negative side of raising a child with special needs. Like the publishing agents that the professor encountered, some people only want to hear about the inspirational side of the story. Truth is, there is not always a happy ending or miracle cure when raising a disabled child, be it autism or cerebral palsy or paraplegia. These are life-long disabilities. There are happy moments, of course, as well as accomplishments both major and minor, but for parents raising a disabled child, it is a daily struggle to make sure that the child gets the medical care and therapy and attention that he or she needs. Parents undertake this monumental and thankless task not because they hope for some Hollywood ending, but because they love their child and they do what they need to do, even if they never knew they had such strength and determination in them.

It’s not all negative, of course. Jane tells me all the time how much she loves her son and how he has taught her so much about herself and about life. She says she cannot imagine who she would be without her son. At the same time, however, she also feels a lot of pain and loss and regret about what she and her family have had to sacrifice in order to care for her disabled son. The daily struggle can truly be overwhelming at times. Jane believes that parents often feel unable to express these feelings for fear of being branded a less-than-stellar parent. As she told me, “There isn’t a safe place to express one’s own doubts about being able to effectively take care of another person who requires so much care. It’s daunting, hard and stressful and for some reason it’s not completely OK to admit that.”  Jane is careful about the sentiments she expresses in public versus those she tells to her friends:

There is the aspect of autism that you are allowed to talk about versus not allowed. I’m allowed to admit it’s hard, but I can’t really say how hard or I’m too negative. I’m just supposed to say it has changed my perspective and I’m blessed.  It has changed my perspective but I’m not blessed. Shut up about being blessed.

While disabilities are all different and every parent’s story is unique, there is a common thread that runs through them all – raising a disabled child takes its toll on the parents and the family as well as the child. The challenges can be enormous. Some of the more common challenges include:

  • Financial:  Finding ways to afford medical care, therapy, services;  working with insurance companies and various state agencies;
  • Educational:  Struggling with teachers and school administrators to make sure that your child is getting an appropriate education and Individualized Education Program or IEP.
  • Medical:  Finding doctors who are willing to take the time to listen to your concerns and diagnose your child; getting referrals to specialists; sorting through the myriad hoops of insurance; finding therapies that work for your child;
  • Social:  The loss of normal everyday activities like going out to dinner, taking trips, seeing friends; not having anywhere to turn to talk about what they are going through.
  • Marital:  A couple often experiences difficulty because of all the other stresses that are created by having a disabled child, as well as the substantial time investment that is required.
  • Family: Other children in the family can be affected because mom and dad have to devote so much time to the disabled child and because the family’s usual routine and activities are disrupted; money can often be tight.
  • Psychological: Many mothers experience feelings of guilt, wondering if it was something they did during pregnancy that caused their child to have this disability.
  • Legal: Figuring out what rights you and your disabled child have, what services you are entitled to.

I can’t say enough about those parents who take on these challenges on a daily basis.  It is difficult to even imagine the level of devotion and commitment that is required.  I welcome all parents to share their stories — the good and the bad — so that the rest of us can try to better understand the reality of raising a disabled child.  In future blogs I will talk about some of these challenges in more detail and where parents can turn for assistance.

Image from metroparent.com

Children With Cerebral Palsy May Benefit From Cell Transplants

Wednesday, April 21st, 2010

Since our firm at any given time handles a number of cases involving cerebral palsy, I am constantly trying to find useful information about new developments in therapy, research, procedures – anything relevant to the topic of preventing or helping those who suffer from cerebral palsy.

This morning I came across a report in Medical News Today -Children With Cerebral Palsy May Benefit From Cell Transplants – which, I must admit, I had not heard of before.  Apparently a group of Chinese researchers are now hypothesizing that a type of cell known as olfactory ensheathing cells (OECs) may hold promise for treatment of infants and those in early childhood with cerebral palsy.  

Clearly this research by the Chinese is not yet being conducted on a large scale level. Nevertheless, I thought I would report on this since the ‘science’ (in which I don’t purport to have expertise) seems logical and potentially noteworthy. With those qualifiers in mind, here is what’s behind this ‘thinking.’  Rather than try to give you the layman’s recap of OEC’s, I’ll let the article speak for itself.

Transplanted OECs, known to retain exceptional plasticity and promote olfactory blood vessel growth while offering neuroprotection, have been demonstrated to be potentially useful for a number of neurological disorders, including multiple sclerosis, spinal cord injury and amyotrophc lateral sclerosis (ALS).

So what does this mean for those who suffer from cerebral palsy? The corresponding author Dr. Hongyun Huang of the Beijing Rehabilitation Center provides the details:  ”We conducted a randomized, controlled clinical trial with 33 volunteers, 14 of whom completed the six-month study, to determine if transplanted OECs were effective in treating children and adolescents with CP, given that CP shares many of the same features of other degenerative diseases.”

According to Dr. Huang, a protocol was developed from this hypothesis based on their knowledge of a key location “in the brain’s frontal lobes (defined as the “Key Point for Neural network Restoration (KPNNR)” based on previous studies) for injecting OECs and that the injected OECs would produce Schwann cell-like myelin sheaths around demyelinated axons.”  Demylinated axons are often referenced as a rather consistent finding when imaging the brains of victims of cerebral palsy.

Buoyed by the findings of this admittedly small trial group, Dr. Huang reports:

“Our results showed that transplanting OECs into CP patients could improve the neurological function of the patients and did not cause significant side effects. The procedure may be a plausible method to treat this as yet incurable disorder.”

For anyone who saw the recent 60 Minutes report (21st Century Snake Oil) on charlatans advocating a cure through injection of stem cells (for virtually any malady under the sun), caution takes center stage with all such reports.  No – I’m not suggesting that the Chinese study is voodoo medicine by any stretch of the imagination.  For those who keep up with this field of stem cell research and its potential applicability to treatment of cerebral palsy, you are aware of the recent (early February of this year) announcement by the FDA of an approved trial for stem cell research for victims of cerebral palsy. In addition to our having reported on this FDA-approved trial, I have also reported on a collaborative research program called Newborn Possibilities Program in Arizona, which is yet another collaborative effort using stem cell research concepts to improve the lives of these children.

While hope reigns eternal that meaningful research will lead to meaningful cure or improvement in the quality of life for cerebral palsy victims, Cell Transplantation associate editor Dr. Cesar V. Borlongan offers the following words of caution concerning the Chinese (and other) stem cell clinical trial:

In parallel with recently FDA-approved US clinical trials of cell therapy for adult stroke and cerebral palsy, this clinical study in China advances the use of stem cells for treating brain disorders, but a very careful assessment of this experimental treatment needs to be exercised in order to gauge its safety and efficacy.

Through social networking media such as LinkedIn and Twitter, I have come across some fascinating people who have devoted their lives to stem cell research.  If perchance any of my ‘connections’ and ‘followers’ out there have further information about this Chinese research and other stem cell research programs involving cerebral palsy, I would greatly appreciate your sharing your information with the Nash Law Firm community of readers by posting helpful comments to this blog.

Cerebral Palsy: new research to improve dexterity by home therapy using modified gaming instruments.

Tuesday, March 30th, 2010

Today I came across yet another interesting and common sense concept in the quest to help those with cerebral palsy for performing important dexterity exercises in the comfort of their home.  The article - Daily Targum – Researchers spawn new therapy for cerebral palsy patients – recounts a small study (3 teenage patients) taking place over the last year at Rutgers University and Indiana University using a modified Sony PlayStation 3 gaming glove to improve dexterity for victims of cerebral palsy.  

One of the keys in this research project is to find a way to move therapy into the patient’s home utilizing an activity that all kids enjoy – gaming.  The basic goal is to not only move important therapy into the home but to provide a method for young cerebral palsy patients to perform this therapy without the need of costly and time-contrained supervision.

The program is the product of a collaborative effort of these universities headed by Grigore Burdea, a University professor of electrical and computer engineering, and Moustafa Abdelbaky, an electrical and computer engineering graduate student.  Another key player in this endeavor is Meredith Golomb, an associate professor of neurology at Indiana University School of Medicine.  She found out about Burdea’s work through the Internet and said the combination of her skills with Burdea’s was perfect.

“I’m a pediatric neurologist and know how to assess the kids medically,” Golomb said. “He is an engineer and knows how to get the systems working — it has been a great collaboration so far.”

Some weeks ago, I posted a story about research underway at the University of Michigan in the use of a treadmill to help improve the neuromotor development of younger children with cerebral palsy.

It is through the work of such researchers and many others devoted to helping discover the causes of cerebral palsy that key progress in making the lives of these people with special needs better will be made.  We will  keep you posted on similar studies and research efforts.  Hopefully, if you are the parent of a child with cerebral palsy, you will find one of these techniques of interest and potentially useful in maximizing the chances of a better life for your child.

CDC Features – Data Show 1 in 303 Children Have Cerebral Palsy

Monday, March 22nd, 2010

Cerebral palsy – how common is it? A recent “Features” posting by the CDC (Centers for Disease Control and Prevention) provides some answers and gives parents some ‘early signs’ of which to be aware.

While everyone knows that cerebral palsy (CP) can be a devastating condition, it is less well-known how common CP actually is. The Center for Disease Control recently released new data on the frequency of CP. In its study, it found that CP affects 3.3 per 1,000 eight-year-old children, or 1 in 303 children. This data was collected from select communities in Georgia, Alabama and Wisconsin, not the nation overall. Rates may differ slightly in other localities. However, the CDC pointed out that its most current findings on CP frequency were similar to previous studies which showed that CP affected 3.6 per 1,000, or 1 in 278 children.  

In reporting the data, the CDC also advised parents what to look out for in terms of signs of CP, based on the age of the child. Parents should consult a physician if they notice any of the following signs:

A child over 2 months with cerebral palsy might have difficulty controlling head when picked up, or have stiff legs that cross or “scissor” when picked up;

A child over 6 months with cerebral palsy might continue to have a hard time controlling head when picked up, or reach with only one hand while keeping the other in a fist;

A child over 10 months with cerebral palsy might crawl by pushing off with one hand and leg while dragging the opposite hand and leg, or not sit by himself or herself;

A child over 12 months with cerebral palsy might not crawl, or not be able to stand with support;

A child over 24 months with cerebral palsy might not be able to walk, or not be able to push a toy with wheels.`

Parents, be aware of these early signs!  If you are not sure what to do or to whom you can turn, the CDC offers the following information:

To find out who to speak to in your area, contact the National Dissemination Center for Children with Disabilities by calling 1-800-695-0285 or visiting the Center’s Web site

Of course, you always have your child’s pediatrician as a starting point.

Cerebral Palsy Verdict: $23.3 Million – Minnesota – birth injury – delay in performing C-Section

Sunday, February 28th, 2010

This is a report from AboutLawSuits.com:  

The family of a girl who was diagnosed with cerebral palsy as a result of a birth injury has been awarded $23.3 million by a Minnesota jury after suing a hospital for waiting too long to perform a Cesarean section.

The Minnesota cerebral palsy lawsuit was filed against Rice Memorial Hospital and Affiliated Medical Community Center by Elise Rodgers, as a result of alleged negligence during the birth of her daughter, Kylie, in June 2007. According to a report by Minnesota Public Radio, Rodgers claimed that negligent medical care caused the girl to suffer severe brain damage because doctors failed to act quickly once the fetal monitor warned the child was being deprived of oxygen during labor.

The family argued that Kylie’s umbilical cord was compromised, and that doctors should have performed a Cesarean before she suffered permanent brain damage. Kylie, who now has cerebral palsy as a result of the negligent care, requires constant suctioning of her airway, sometimes as often as every three to five minutes, in order to survive, according to the lawsuit.

In a verdict handed down earlier this month by a Kandiyohi County jury, Rodgers was awarded $10 million for the child’s future medical expenses, $1.7 million for past medical expenses, $1.5 million for future lost earnings and $10 million for disability, emotional distress and pain.

Many research studies are underway and new therapies are being developed for infants with cerebral palsy.  Nevertheless, many children are still born with this condition and its spectrum of disabilities.  When these injuries are the result of medical negligence by physicians, hospitals and/or other health care providers, the civil litigation system is there to provide for these special needs children.  Contrary to politically-charged statements by those on the right, juries do understand when these life-altering injuries are caused by negligence.  When they do and the care needs are properly presented, verdicts such as this in Minnesota are the proper result.