Cerebral Palsy Blog

Cerebral Palsy Blog

A New Report Confirms that Children with Special Needs Must Receive Highly-Coordinated Care

Friday, July 12, 2013

The Landscape of Medical Care for Children with Medical Complexity published by the Children's Hospital Association makes clear what many parents, patients and caregivers already know: children with special needs must receive highly-coordinated care. Because children with cerebral palsy and other neurological, physical and behavioral challenges often need a multi-faceted approach to their treatment, co-ordination amongst doctors, therapists and other caregivers is essential but, according to the authors of this study, this coordinated approach is currently lacking.

The authors are Jay G. Berry, MD of Boston Children's Hospital and Harvard Medical School; Rishi K. Agrawal, MD from the Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University School of Medicine; Eyal Cohen, MD of the Hospital for Sick Children, University of Toronto; and Dennis Z. Kuo, MD of Arkansas Children’s Hospital, University of Arkansas for Medical Sciences.

They identify the subject of their study as children with special needs or what they call "children with medical complexity" (CMC). While such children make up only 1% of the nation's population under the age of 18, they account for one-third of pediatric care costs, according to the report's findings. The services these children receive can be greatly improved with greater efficiency, communication and coordination between healthcare providers. "Care for many CMC is currently fragmented, uncoordinated, and crisis-driven with a tendency to overmedicalize the child and to under-support the child’s family caregivers," they say. To improve this care, they have an ambitious and laudable plan. They recommend a model that does the following:

"1) provides urgent care in the outpatient setting to treat acute health problems; 2) contains at least one outpatient provider who comprehensively addresses acute and chronic medical, functional and psychosocial needs; 3) coordinates decision making among all participating health care providers; and 4) develops effective, proactive plans of care to maximize the child’s well-being and proactively anticipates health problems that are likely to occur. Because much of this type of care is not necessarily delivered during face-to-face health care encounters with CMC, it is poorly reimbursed in most fee-for-service payment models. Health system redesign is necessary to improve the ecology of care for CMC and their families."

This may be an idealistic goal but when it comes to caring for children, idealism does not seem misplaced.

Research Study: Vibration Therapy may Improve Strength for Adolescents with Cerebral Palsy

Wednesday, June 26, 2013

Researchers presented their findings at the most recent annual meeting of the Endocrine Society. The research is based upon a clinical trial in New Zealand and may indicate a type of treatment that may make a difference for countless people with cerebral palsy in the United States and throughout the world. Because the condition often impairs coordination and the ability to move, muscles and bones typically become weak from lack of use.

According to a recent report, the clinicians in New Zealand asked adolescents with CP and their families to participate in the study. The "researchers measured bone-mineral density and muscle mass after a course of whole body vibration therapy. They found that leg and spine bone-mineral density increased after the therapy, although total bone-mineral density did not change. Muscle mass in the legs also increased."

The report also states that the therapy "increased the distance that study participants could walk for six minutes. Compared to the distance they walked at the beginning of the study, participants increased their distance by about 10 percent" after obtaining the treatment.

While only 13 people participated in the study, the researchers claim that the treatment may become a widespread aid to improving the lives of people with the condition. More research will be conducted on the treatment, of course, but such innovation is a symbol of the creative and forward thinking efforts of dedicated medical professionals whose goal it is to improve the lives of people with cerebral palsy.

Pediatricians Recommend more Thorough Motor Skills Screening for Infants

Thursday, June 06, 2013
Pediatricians Recommend more Thorough Motor Skills Screening for Infants 

The American Academy of Pediatrics is recommending more robust screening of babies and toddlers for signs of motor skills delay. Such delays often indicate cerebral palsy or other neurological disorders. In the research, published on May 27 in the organization's journal, the authors contend that routine check-ups for children at 9 months, 18 months, 30 months and 48 months should not only emphasize social development and language skills, as they do now, but should also focus on motor development and coordination.  The doctors suggest that both gross and fine motor skills should be evaluated through observation of the child performing appropriate activities that would indicate abnormal development. These observations should be formalized and required so that children can be given the specialized treatment they need as soon as possible, the authors of the study contend.

The report offers detailed recommendations for physicians, nurses and other health care providers to perform the evaluation. A description of the algorithm developed to formalize the evaluation is provided in the article but so too is the justification for performing more thorough examinations: "early recognition may assist parents with family planning. A timely diagnosis may reduce family stress related to diagnostic and prognostic uncertainties." Since children can certainly benefit from early intervention by specialists and parents can get peace of mind based on more substantial evaluations of their children, there seems to few reasons why these new recommendations should not be implemented.