Day #5: My Child has been Diagnosed with Cerebral Palsy – Now What???

March 5, 2013  Day #5 of our 30 Days of Inspiration, Information & Motivation series marking National Cerebral Palsy Month.

Today’s post follows on the heels of Dr. Lisa Thornton’s “Giving the Diagnosis of Cerebral Palsy” article yesterday.   As a mother of a child with Cerebral Palsy, I’ll never forget receiving the startling diagnosis for my daughter, Cathryn, then leaving the doctor’s office in total shock thinking to myself, “Now What???”  Like many parents I talk with, I seriously had no real clue what to do next or where to turn.  An exhaustive online search (in 2000) turned up mostly doom and gloom, personal injury legal websites, and very little in the way of hope, effective treatment options or logical next steps.  I would have given anything for a reputable source of guidance, and to know that I was not alone in this unfamiliar journey.

When we decided to put together our 30 Days” series, we thought it would be extremely valuable to provide concrete information to families about what they could do once their child received a Cerebral Palsy diagnosis.  Today is the initial step in that process, developed especially for “Reaching for the Stars” by a unique physician/parent partnership (we love those!) between Dr. Sarah Winter and mom, Patricia P. Glenn.

Dr. Winter is a neurodevelopmental pediatrician at the University of Utah.  Dr.Winter’s research focus is the systems of care for children with disabilities. This is expressed through her role as the principle investigator over the past four years of the Utah Regional Leadership Education in Neurodevelopmental Disabilities (URLEND). Additionally, Dr. Winter has recently taken on the role as the medical director for the Neonatal Follow-up Program at the Bureau for Children with Special Health Care Needs. Her clinical care is focused on the early identification of developmental problems, especially Cerebral Palsy.

Patricia P. Glenn is a mother of 2 year-old triplet boys, one of whom has Cerebral Palsy, and a stepmother of an 11 year-old girl.  She recently resigned as a federal prosecutor with the U.S. Attorney’s Office in order to spend more time with her children.  

 

 

We hope you find today’s topic helpful.  Please let us know what you think at www.twitter.com/reach4stars

Cynthia Frisina, Cathryn and Alexandra’s mom, Executive Director, Founder – Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy.  

 

“My Child has been Diagnosed with Cerebral Palsy – Now What???”

By Sarah Winter, MD and Patricia Parkinson Glenn

The words “your child has Cerebral Palsy” spoken by a physician will drastically change your life, even if the words were anticipated. Each parent has a different experience when hearing those words for the first time, and for some parents, it is only a confirmation of what the parents believed from witnessing their child’s actions (or lack of actions). For others, it is a devastating moment that will reverberate for years.

As difficult as it may be to hear these words, it is even more difficult to figure out what to do next or where to turn for help. Upon hearing this diagnosis of your child, take a deep breath.  Your child is the same person before receiving the diagnosis as he or she is after receiving the diagnosis.  She is still your child.  He is still your “pride and joy”.  You still have the same job that you had before the diagnosis, and that is to ensure that your child has the best potential for a full, happy life.  It is also true, though, that you have additional lessons to learn and knowledge to gain in this upcoming experience.

  • First, it is recommended that your child have a “medical home”, not necessarily a physical place, but a concept of care that includes a primary care provider who works with a team or clinic that will be a resource to you and your child for medical issues that most likely will be different from children without cerebral palsy.  This “medical home” is a team of medical care providers to whom you should feel free to bring your concerns about your child, and if this office cannot address them, they can help you find the people or services who can.  Hopefully, you have already established a “medical home”.  If not, the following website may help you decide whether your primary physician provides that type of care. (www.medicalhomeportal.org/medical-home)
  • Second, your child will most likely qualify for early intervention services, which can help you get started on an individualized family service plan to address the medical and developmental needs of your child.  This is a federally mandated program available in every state and you can find additional information about early intervention through this website (www.utahparentcenter.org/resources/ei/)
  • Third, additional services may be available for those families wishing extra help beyond their “medical home” and early intervention. These services are typically found through specialized physicians who care for children with cerebral palsy, and specialized therapists who address the functional abilities of children with cerebral palsy.  The kinds of medical specialists you may wish to consult would typically be pediatric physiatrists or physical medicine and rehabilitation specialists (often called “PM and R doctors”) , pediatric orthopedic specialists, developmental pediatricians, and pediatric neurologists.
  • PM and R doctors help with the management of muscle tone, the decisions for bracing and other equipment, and the assessment of the child’s overall functioning or “activities of daily living”.  Orthopedic specialists help with the development of the child’s bones and muscles—that the bones and muscles are in a good position to allow the child to do whatever he or she needs to do. Developmental pediatricians evaluate the child’s development and medical issues and provide guidance on all types of therapies, including physical therapies, medical therapies, and behavioral interventions.  Pediatric neurologists are often involved in the initial diagnosis of cerebral palsy, and if a child exhibits seizures, they will continue to follow the child. Pediatric neurosurgeons are sometimes involved because a child may need a shunt or a special treatment for very high muscle tone.   Because these medical professionals are highly specialized, oftentimes these specialists can primarily be found in major metropolitan areas. You may wish to consult the American Academy of Cerebral Palsy and Developmental Medicine website to find out more information about physician providers (www.aacpdm.org)
  • Fourth, the physical therapist plays a key role in the cerebral palsy child’s development.  Physician visits are important, but they do not provide that hands-on, day-to-day help with specific motor and developmental goals. Since cerebral palsy is primarily a problem with the movement of a child, the physical therapist plays a key role in the child’s intervention.  This is the person who has a great deal of knowledge about motor milestones, setting movement goals, recommending exercises, and recommending supportive equipment.  The focus is always on the child’s development as a whole rather than doing a task perfectly.  For example, it is more important that a child get to where she wants to go than to walk perfectly. If a walker, wheelchair or toy car gets him there, then great!
  • Fifth, the occupational therapist’s work is about improving the activities of daily living.  Early in the child’s life, the focus is generally on the motor abilities of both the arms and the legs.  As a child gets older, the focus turns to the physical tasks of living, like getting dressed, brushing your teeth, writing, eating, and going to the bathroom.  An occupational therapist has many strategies to help a child achieve these critical milestones.  Some therapists have extra expertise in feeding problems, while others have additional knowledge and expertise in sensory difficulties.  These are all problems that many children with cerebral palsy face.  Therapeutic interventions for children with cerebral palsy are highly individualized to the issues and challenges each child faces.
  • Lastly, speech therapists are frequently involved in the care of a child with cerebral palsy.  If a child has  difficulty moving their arms and/or legs, they may also have difficulty trying to move the muscles of their mouth, tongue and face, creating problems in eating and talking.  This is a situation in which a speech therapist may be included in the care of a child with cerebral palsy.  Speech therapists do more than just help with the production of words–they are helpful when children have difficulty chewing, when children have problems with words and may need a device to communicate, and when children have social difficulties due to a lack of ability to communicate.
  • Experience, passion, creativity, and knowledge of evidence-based interventions are the hallmarks of a good therapist.  Obviously, a therapist can only do so much without the presence and participation of parents. As a child gets older, there may other specialists involved in your child’s progress.  Your child may have special learning needs and will be seen by a psychologist, special educator, and extra tutors.  Your child may want to ride a bike or play sports but need specialized equipment or programs in adaptive sports.  There are people who are very talented in providing these services and equipment. Your child may need special funding or a different type of financial planning for the future.  There are specialized lawyers who do this work.  As your child grows, it will become apparent to you what they will need.

This is only a small list of possible services and help for your child with cerebral palsy.  Some families may find all of these services together in one place.  However, this is rare.  Most of the time, families will find help for their child in multiple locations with multiple providers. Just remember, the people who are in charge of this entire process are you and your child.  This is as it should be.  You are the parent, and no one knows your child better than you.  Take one day at a time and thoroughly enjoy each small, but miraculous, step in the progress of your child.

Additional resources and information are listed at http://reachingforthestars.org/resources/