Appointment with the Family of a Neurologically Impaired and Disabled Child
Essentials
The approach towards the child and the family must always be respectful.
The child must always be carefully examined, and the doctor must consider the measures most helpful in the current situation.
The parents know the child best and are experts as regards their child's problems.
The doctor should ask about the parents' coping and the sufficiency of support, and parental fatigue must be taken seriously.
General remarks
The child's neurological disorder may become manifest in many different ways. It may cause problems related to moving, learning, perception, attention and executive functions or their combination.
Some of these disorders are progressive, others static, nonprogressive. The degree of severity varies from mild to very severe, even quickly fatal diseases.
Many neurological disorders affecting children are so rare that even the treating doctor has no previous experience about the disorder and its natural course.
Even though new genetic research methods have enabled finding the exact diagnosis of many neurological orphan diseases, the aetiology may remain unclear, despite extensive tests and investigations which are demanding and time-consuming for the child and his/her family. In that case, it is difficult to predict the future development of the child's disorder, and the family must learn to live with uncertainty. New and unexpected symptoms might emerge, such as a sensory deficit or epilepsy, or existing epilepsy may worsen and become difficult to manage even with medication.
Only very few neurological disorders affecting children have targeted treatment, but a neurologically impaired child can have extensive medication for symptomatic treatment: antiepileptics, antispasmodics as well as drugs to help with sleep problems, night time restlessness, gastric and oesophageal irritation, constipation etc. Possible interactions must always be borne in mind when prescribing new medication. Unnecessary medication should be avoided.
Examples of neurological disorders and related problems
Cerebral palsy
Physical disability most commonly caused by a prenatal or perinatal injury to the brain. It can become manisfest as hemiplegia, diplegia or quadriplegia.
The brain injury causing cerebral palsy is not progressive.
The severity of cerebral palsy does not necessarily correlate with intellectual functioning. Even a child with severe physical disabilities may well be able to understand the discussion taking place during an appointment, and he/she should be taken into account according to his/her age.
Meningomyelocele (MMC)
MMC causes mobility impairment of the lower limbs. The severity of the impairment varies according to how high in the spinal cord the MMC is located.
Depending on the level of malformation, a child with MMC may be able to walk unaided or his/her independent mobility may be limited to moving around in a wheelchair. There is often lower limb sensory loss which predisposes him/her to skin problems.
There are often problems associated to urination and defecation; continence varies.
The development of hydrocephalus (disorder of cerebrospinal fluid circulation) is common, and head circumference should be monitored regularly.
MMC is a type of spina bifida.
Muscular dystrophies
Muscular dystrophies are a group of different diseases which vary in age of onset, severity and course of the disease. Muscular dystrophies are often progressive.
In muscular dystrophies, mobility impairment is often significant whilst mental functioning is unaffected. The need for help may be great, and many assistive devices may be used.
Muscular dystrophies may be accompanied by weakness of respiratory muscles or myocardium.
Regular follow-up observation of respiratory function and strengthening the respiratory muscles are important. Respiratory insufficiency appears at first during sleep. It causes daytime tiredness and predisposes the patient to respiratory tract infections. The child may need respiratory support.
Progressive encephalopathy
Rare diseases where the child's development becomes slower or regresses
Diseases are very difficult for the family to cope with, and the child may succumb to them quickly.
Some types of progressive encephalopathy belong to the so-called the Finnish Disease Heritage, that is, they are more common in Finland than elsewhere. Find out about locally relevant diseases.
Severe learning disabilities and developmental disability
Severe learning disabilities, which may include poor impulse control and problems related to executive functions and attention, significantly interfere with the social functioning of both the child and the family.
The child's mobility skills and verbal expression may appear to be normal, but his/her comprehension and judgement may be deficient enough to require constant adult supervision and guidance, and the child's comprehension does not necessarily match his/her physical development.
A neurologically impaired child in the family
How a neurologically impaired or disabled child is regarded by the family is dependent on many factors: the parents' personal childhood experiences, the family's background, cultural context and socioeconomic status as well as the birth order of the disabled child among his/her siblings.
Previous experience with neurological disorders will often help the parents to better understand the child's situation.
In a difficult family situation, an impaired or disabled child might be the last factor that throws the family's already shaky stability off balance.
Reactions to disability
If the firstborn child is disabled the parents' feelings of guilt and shame may be particularly strong (”What is wrong with us, why can't we have a healthy child?”). In many families the birth of the child has been carefully planned beforehand, studies have been completed, a new home bought with a child in mind etc. The strongest feelings are often unfairness, anger, bitterness, sadness and depression - it can be almost impossible to accept the child and his/her disorder.
Awareness of the neurological disease or disorder may strengthen the protective instinct of some parents, and they will do anything to be able to offer the child a better life.
Actors participating in the care of the child, such as the hospital staff, may become targets of the parents' bursts of emotion, which are fuelled by fear, grief, helplessness and disappointment.
Some parents will seek a second opinion from another doctor, some will turn to alternative therapies and may even give up contact with the treating hospital although after the initial shock most families return to follow-up and treatment offered by the treating hospital.
A neurologically impaired child at an appointment
During an appointment, the doctor's attitude towards a neurologically impaired child should be the same as towards any child: the main issue is the child and his/her current problem.
The disability can be viewed as the child's special feature that must be taken into account when planning investigations, procedures and care.
The approach towards the child and the family must always be respectful.
The child's parents are the best experts as regards their child's problems. They know the child and are very experienced in carrying out the daily special care procedures required by the child.
If the neurological disorder has only recently been diagnosed, the parents' behaviour may be particularly emotional and confrontational; the doctor's conduct needs to show self-discipline and professionalism.
The parents must always be listened to and their wishes taken into account, but the medical investigations and treatment remain the responsibility of the doctor.
The parents of neurologically impaired children sense a nonchalant attitude quickly if they feel that professionals do not want to help the child or that he/she is not properly examined and treated due to the underlying condition.
Even if the child's medical records contain ”not for resuscitation” or ”not for intensive care treatment”, the child must always be carefully examined and the doctor must consider the measures most helpful for the child in the current situation.
The doctor should observe the family members during the appointment, ask about their coping and the sufficiency of support and, if appropriate, offer in-patient care for the child.
Parental fatigue must always be taken seriously since taking care of a neurologically impaired or disabled child is particularly hard and these children are more likely to be maltreated than healthy children.
If need be, a social worker can explore the possibility of, and need for, help and respite care.