James Peinkofer

Losing Patience


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the infant accept a caregiver’s touch. Hypersensitivity to sound can keep an entire family tiptoeing. Infants with this condition frequently wail with discomfort when distressed by noise. Hypersensitivity to temperature relates to a dysfunction in the body’s self-regulatory and circulatory process. Frequently hands and feet will become cold or hot. Caregivers will need to be extra conscious of this when dressing a hypersensitive child.

      LEARNING DISABILITY

      Children in this category may appear to act and think normally until they are faced with regular mental processing challenges in the classroom. This is another subtle complication from a shaking incident that is rarely discovered. Children with learning disabilities cannot process complex information adequately or smoothly. Writing, reading, mathematical computations and other types of learning can become significant hurdles.

      Great care and patience is required when working with a child with a learning disability. Such a child will probably require an individualized educational plan (IEP) whereby many disciplines will come together to develop the right tools to effectively educate the child. There are several types of learning disability: visual (problems distinguishing shapes or colors), verbal (problems with word or sentence formation), reading (misreading or problems with pronunciation), attention (poorly follows instructions) and computational (problems with math). Learning disabilities can be diagnosed by psychological testing.

      MENTAL HANDICAP

      After a child is shaken and if there has been significant brain trauma, he or she may not have the ability to learn like other children. Children with mental handicaps have below-average intelligence, meaning their intelligence quotient (IQ) falls below 70—the average IQ being 100. IQ may actually drop as the child becomes older.

      Mentally handicapped children may later learn to care for themselves, live on their own, go shopping and hold jobs. But in a small percentage of cases, the brain damage is too severe and they never become able to care for themselves. Children can be mentally handicapped in conjunction with other SBS injuries, such as blindness, deafness or CP. Evaluation and planning by a team of professionals is vital for the successful functioning of a mentally handicapped child and other family members. Such a team should consist of a pediatrician, speech therapist, clinical psychologist, special education teacher, social worker, etc. In this situation, a properly constructed IEP will maximize intellectual and social potential. Parents and caregivers should focus on gross motor skills, such as running, swimming and playing ball, as fine motor skills have the potential to be unsuccessful and frustrating for the child.

      MICROCEPHALY

      This condition is defined by a head circumference that is two standard deviations below the average for gender and age. Shaking can cause an infant’s brain to slow down its rate of growth. The protective skull will slow down in tandem. Microcephaly in itself renders a poor prognosis. Most of these children will be severely disabled or have other physical complications.

      PERSISTENT VEGETATIVE STATE

      With the exception of death, this is by far the worst consequence of SBS. Though rare, this condition is emotionally the most difficult for an infant’s family. When an infant’s brain suffers severe damage, it may go through dynamic changes, such as excessive fluid build-up, ventricle atrophy, chronic hemorrhage, etc. In response to such trauma, the brain may shut down, leaving only the brainstem to function. Thus the child has no awareness of the outside world. Activities such as eating and drinking, moving spontaneously in bed, reacting to sights and sounds and sometimes even breathing are all very limited or impossible. The child is in a persistent vegetative state, where the body can only be kept alive artificially with breathing tubes, feeding tubes, etc. The child’s body will continue to grow, but there is little hope for rehabilitation and death can be expected within months to a few years.

      RESPIRATION DIFFICULTIES

      Another devastating consequence of SBS is that a child’s brain may be damaged in an area that controls the function of the throat. For example, if the gag reflex is lost, the child cannot clear his or her lungs. A child may also aspirate, or breathe in, saliva or food and could ultimately develop pneumonia. A tracheostomy is an operation done to provide an alternative route for breathing. It involves surgically cutting a hole and placing a tube in the child’s trachea. This opening bypasses the mouth and throat and allows for a separate airway. Tracheostomy tubes can be temporary or permanent. Those that are permanent are more for children who have severe problems with aspiration.

      Families will need to learn the details of caring for a tracheostomy tube, which includes regular suctioning, cleaning and dressing. For chronically debilitated children, there may ultimately be a need for ventilator support. A ventilator is an apparatus that breathes for the child. This is a life-sustaining measure, yet makes the child more susceptible to lung infections.

      SEIZURES

      Also known as convulsions, seizures can be a feature with any brain injury diagnosis. Seizures occur from a sudden flurry of neuron activity which blocks normal brain functioning. A common entity with cerebral palsy and epilepsy, they are one of the main consequences of SBS.

      Electroencephalograms (EEGs) measure brain activity during a seizure and when seizures are absent. Most children with epilepsy and CP have abnormal EEG patterns.

      There are several types of seizures that a child may experience. Generalized seizures (formerly known as grand mal) are the most demonstrative of seizures and involve the entire cerebral cortex of the brain. There will be tonic-clonic seizuring. The tonic element of the generalized seizure will produce body stiffening and loss of consciousness. The clonic elements of the generalized seizure alternate between relaxation and tensing of the body’s muscles. Often, incontinence and deep sleep follow generalized seizures.

      Partial or focal seizures (formerly known as petite mal) are limited to a small area of the cortex and produce involuntary, sudden movements in one area of the body. They occur in a way that is non-intrusive to the child.

      There are several types of partial seizures. Simple partial seizures occur when the individual experiences an unusual sensation, including sudden, jerky movements of one body part, distortions in hearing or seeing, stomach discomfort or a sudden sense of fear. Consciousness is not impaired. Complex partial seizures are characterized by impaired consciousness. During such seizures a child will appear dazed and purposeless behaviors called “automatisms” may be observed, such as random movements, staring or lip-smacking. Generalized absence seizures are characterized by lapses in consciousness for several seconds. During this time a child will appear to be staring into space with eyes rolled upwards. They may evolve into other seizure types, such as complex partial or tonic-clonic.

      Brain injury in SBS may also be followed by infantile spasms. These spasms, unlike normal startle reactions, occur when an infant’s head suddenly drops forward while its trunk and legs “jack-knife” upward. They occur frequently throughout the day and disappear around age twenty-four months. Infantile spasms can lead to a more disabling condition called Lennox-Gastaut syndrome, which is characterized by frequent seizuring. Finally, status epilepticus is characterized by a steady set of seizures where consciousness is not regained between convulsions. Any seizure that lasts more than five minutes should be viewed as a medical emergency. Shaken infants often present in hospital emergency rooms with an initial diagnosis of status epilepticus.

      Seizures in infants who have been recently shaken are associated with blood in the subdural and subarachnoid spaces of the brain and intracranial pressure. As the intracranial injuries resolve, there should be a resolution of the seizures as well, though some infants may experience twitching or jerking in the face, hand or leg. Lastly, a fever in a brain-injured child can bring about a seizure (febrile seizure).

      Seizures can be very troubling for parents and caregivers, but knowing what to do during a seizure can change a situation of panic into one of structured calm. Being prepared for seizures is the main thing that parents and caregivers can do for their child. The following pattern of activities is a positive system to use when seizures occur: calm, turn, allow, time, support and document.

      First, the adults should remain calm in order to give maximum support