Chiropratic Medicine

Chiropratic medicine involves restoration of the spinal biomechanical balance which affects the musculoskeletal, neurological, and vascular health systems aof the body.Treatment is applied by manipulation of the spine to remove mechanical stress.The main reason for chiropratic treatment is relief of pain and reduction of tightness especially of the neck and spine.

                The origination of chiropratic medicine is credited to Daniel David Palmer who opened an office of osteopathy and magnetic flow in the 1880s.In 1895 Palmer perfomed vertebral manipulation on a junior who had been deaf for many years and restored hearing that had been lost 17 years earlier.Palmer reasoned that improper alignment of the spine presses on nerves that leave the spinal column at various levels to supply virtually every organ in the body.This disrupts the normal flow of nerve impulses which results in organ dysfunction.Correction of the misalignment releases the pressure on the nerve and restores health.

                There are various categories of chiropractors.The “straights” contend that virtually every illness id due to subluxation and therefore can be corrected by correction of these slippages.The “mixers”understand that other factors are involved in disease and add nutrition, massage, and other holistic measures for treatment.A third category, as yet unnamed, restricts their therapy to nonsurgical musculoskeletal disorders.

                There are 50,000 licensed chiropractors in North America, and it is the fourth largest health profession (after physicians, dentists, and nurses).There continues to be difference of opinion between chiropractors and medical doctors.The latter consider that it is unlikely that subluxation of the spine contributes to many non-skeletal conditions.

Acupuncture and Chinese Medicine

Chinese medicine  dates  back several thousand years.It comprises acupuncture, diet, exercise, and herbal therapy.Traditional Chinese medicine shares similar philosophies with other older medicines, including Japanese, Indian (Ayurvedic), and Greek, primarily the concept of life force as a living energy that embodies the organism and its spirit.The Chinese refer to this as qi, or chi, the Japanese call it ki, the Hindus refer to it as prana, and the Greeks call it pneuma.When the life force is blocked or weakened, the energy is reduced in the tissues and organs.This leads to disease and healing results from correcting the blockage.

                It is difficult to compare Western medicine to traditional Chinese medicine because the concepts are so different.Yin and yang refers to the balance of positive and negative forces.Yin is passive, cool and moist, and is female.Yang is active, hot and dry, and is male.Nuch of life relates to opposites and disease is related to imbalances.Qi flows through the body in 26 meridians (12 paired and two single) or channels althought no anatomic structure has been identified.Figure 6-1 shows the five Chinese seasons and the elementsthat are associated, and the relationships between them.Traditional acupuncture involves insertion of needles at specific sites depending on the problem with 10-30 needles that are in place for about 20 minutes.

Figure 6-1

WOOD                  FIRE                       EARTH                   WATER                 METAL

East                        South                    Center                         North                    West

Dawn                    Midday                  Late afternoon              Midnight                Dusk

Awakening         Wakefulness              Transition                     Slumber                Quieting

Spring                   Summer                  Late summer                Winter                   Autumn

                The most benefical indication for acupuncture is pain and so the pratice does have the potential to be useful in many chronic illnesses that result in pain.Succes is often increased with skill of the acupunturist.In Eastern medicine, acupuncture is used to treat all manner of disease states and illnesses.There are plenty of studies to document that acupuncture works in many conditions.The list of conditions includes adult-onset diabetes, sinusitis, asthma,high blood pressure and so on, althought the effects are variable.In some cases acupuncture treats symptoms and in others it alters the course of the disease.It is probably reasonable to consider a trial of acupuncture and if there is no improvement after six treatments it is unlikely that it is very beneficial.It is a safe treatment and most therapists use disposable needles, reducing the risk of infection.

                There are differences in the training and ability of acupuncturists.Many states do not have formal licensing procedures.Medical doctors are allowed to pratice acupuncture without formal licensing whereas licensed (fully trained) acupuncturists undergo thousands of hours in training.

Complementary Medicine

The title was chosen rather than alternative medicine although the NIH has a section of complementary and alternative medicine (CAM).Alternative medicine can be defined as that which is not usually practiced by traditional physicians or taught in Western medical schools.Complementary medicine can be defined as therapies that supplement conventional treatments so that they are utilized in addition to, rather than instead of, conventional treatment.CAM has become sufficiently widely used that is important that clinicians are aware of the benefits and risks.It is clear that we do not  understand whether many treatments are useful, do not have any benefit, or are harmful.Integrative medicine implies that CAM and allopathic (Western) medicine are combined to provide optimal health.

                CAM is used or tried by one-third to one-half of the population including many children.The use of conventional (Western) medicine for chronic illness has not been as useful as it has been for acute medicine and surgery.Alternative medicines are often used by cancer patients; in fact, it is estimated that $ 10 billion is spent on unproven cancer therapies every year.Heart disease, diabetes, asthma, and cancer have been helped by conventional medicine but there are many areas where complementary medicine can be useful, although much of the information regarding efficacy and safety has been from adult studies and there are relatively few studies of children.

                It is clear that alternative medicine therapies are being used by many families with a view to improving the medical condition and/or the quality of life.There are various reasons for this; some are sensible and many are not.It is likely that there are alternative therapies that will improve how the patient feels but whether they alter the course of the illness is often difficult to establish.

                The reason people turn to alternative medicines include:

·         Frustration with conventional medicine.

·         Awareness of the usefulness of nutritional, emotional, and lifestyle strategies.

·         Desire to avoid side effects of conventional medications.

Complementary or alternative therapies are chosen for ailments ranging from stress to life-threatening illness.It is an axiom that unless one can scientifically prove that a therapy is beneficial it should not be used as a treatment.By this criterion acupuncture should not be used to treat  asthma, and indeed many practitioners do not believe that it should.Despite the fact that there are few studies that confirm that acupuncture benefits asthma, both the World Health Organization and the National Institutes of Health consider acupuncture to be a complementary therapy for asthma.

                Children with chronic illness may well receive alternative treatment, particularly when there is a perception that conventional medical treatment is not going to alter the course of the illness.Specific recommendations are difficult to make because of the diversity of childhood illness.It is considered that the clinician should keep an open mind because some therapies are beneficial in ways that we do not understand.It is important that the communication between family and caregiver be good.If it is perceived that the practitioner is firmly againts alternative medicine and the family wishes to try something, it is likely that they will not inform the practitioner because of the anticipated response.This is obviously hazardous if there is a potential conflict between the various therapies that the child is receiving.It makes sense that there is good communication that will allow the therapies to complement one another.As previously noted, we do not understand how or whether many therapies work, and we also do not have data in many cases of the relationship between standard and complementary treatments.This means that the clinician has to weight the benefits against the potential harm.

                Although many physician are unaaccepting of alternative medicine because of the lack of scientific data to support its use, there are many who embrace alternative medicine and recommend therapy for their patients.

                Conventional medicine tries to be evidence-based which implies that there are vaid scientific studies that document the efficacy of the treatments.Complementary medicine works on the principle that if it seems to help it has the potential to be useful.This is exemplified by acupuncture, a pratice which has been around for thousands of years and seems to work.The qualifications of alternative medicine doctors are difficult to understand and the credentials vary from an advanced oriental medicine doctoral program to a certificate given following a Caribbean cruise.

                The approach to CAM is holistic, which views health as the whole person and includes body, mind, and spirit.Many of the approaches to CAM utilize the natural ability of the body to heal itself.The most commonly used CAM treatments are vitamins and health foods, herbal therapy, chiropratic, relaxation techiques, massage, and acupuncture.

                One of the advantages of CAM has been suggested to be prevention.In reality, conventional medicine has played an important role in prevention although it has not always been embraced by the agencies who pay the bills for medical care.Considerations for prevention for conventional medicine include immunizations, screening test, and physicals.Exercise and change in health habits, with smoking cessation and cholesterol reduction as examples, are commonly recommended.

                One of the major problems with CAM is the lack of controls and safety of alternative medicine.It would be wrong to say that, by definition, alternative or natural medicines are safe.Many natural substances and herbal remedies interact with prescription medicines and the actual effect in an individual patient may be difficult tp predict.As more natural treatments are used it is likely that some of these interactions will be identified.Examples that are important include herbal medications taken at the same time as anesthetic agents, which can be a dangerous combination.

                Medicine manufactured in certain countries may be contaminated and the dosage is not always accurate.Also the claims of the effects of CAM treatments are not always truthful.

                It is sensible to discuss with the treating (conventional) physician CAM treatment that are considered before they are tried.If they are tried without prior consultation and symptoms develop it is important to “own up” to what is being taken because keeping quiet may be detrimental.It is important to be able to identify herbal treatments and secret ingredients should be considered to be hazardous.Injections of alternative treatments are unusual and may be unsafe.

                It is important to separate the placebo effect from a treatment effect.The placebo or sugar pill effect is improvement that results from the power of suggestion.This effect is very powerful and in an individual patient may result in effect that are mistakenly attributed to the actions of the drug.This is more likely in children than adults.

Constipation and Encopresis

Constipation

Constipation is one sympton of many disorders.In the majority of children with constipation the cause is functional or behavioral.There is no one definition of constipation but a combination of reduced frequency, discomfort or difficulty in passing stool, or a feeling of incomplete evacuation.Breast-fed babies may not pass stool for 5-10 days and it is normal for babies to strain to try to pass stool.Children may have large stools every 3-4 days and in the absence of abdominal distension or discomfort and no soiling it is probably normal.

Encopresis

Toilet training leads to bowel control before blsdder control.By age 4 years, 95 percent of children have attained bowel control.The intentional or involuntary passage of feces in inappropriate places (e.g., clothing or floor) after the age of 4 years is encopresis.The definition requires at least 1 event a month for 3 months.Primary encopresis implies that there has not been a 6 month period of bowel continence and secondary encopresis results when continence precedes the symptom.

                Encopresis is by definition not due to a general medical condition except through a mechanism involving constipation.Fecal incontinence can be categorized as soiling with or without fecal retention.Table 5-3 lists some of the causes that may be present.For most of these conditions encopretic symptoms are unlikely to be the only or presenting symptom.

                The major cause of encopresis is overflow incontinence.Stool is retained in the distal colon and rectum and the internal sphincter becomes dilated and functionally incompetent.The external sphincter cannot hold the impacted stool and there is leakage.

TABLE 5-3. CAUSES OF CONSTIPATION THAT MAY LEAD TO ENCOPRESIS

Functiona (non-organic)

Organic

   GI

      Hirschsprung disease (congenital aganglionosis)

      Anal defects (e.g., fissure, stenosis)

      Colonic stricture

   Neurologic

      Cerebral palsy

      Meningomyelocele, spina bifida

      Hypoptonia

   Endocrine

      Hypothyroidism

      Pregnancy

   Psychological

      Depression

      Anorexia nervosa

      Stool withholding

   Dietary/pharmacologic

      Inadequate fiber intake

      Antacids

      Iron

      Opiates

      Bismuth

The child may be unaware that soiling has occured.Any condition that causes persistent constipation may be associated with fecal soiling.Children with encopresis tend to have large stools that may block the toilet.Soiling tends to occur in the afternoon and is less likely to occur at night.Non-organic encopresis may occur with oppositional (defiant) behavior pattern, toilet phobia, and anismus.Anismus is dysfunctional anal sphincter control in which the anus contracts rather than relaxes on defecation.

                A careful history should be taken and the examination includes the rectal exam and evaluation of the external sphincter.Evaluation of neurological function is important and plain abdominal X-ray may confirm the presence of constipation.The treatment starts with education of the parents and child.Explanation of the circumstances is important because there is considerable stigma placed on the problem.Treatment is directed toward clearing the bowel and then reestablishing good bowel function.The maintenance program may take several months particularly if the bowel dilatation has been severe.The maintenance regimen involves dietary changes including a high-fiber diet with increased fruit and vegetables, grains, and cereals.Mineral oil with vitamins, because of fat-soluble vitamin malabsorption, or another stool softener may be useful.Young children benefit from a regimen of sitting on the toilet after the morning and evening meal to get into a routine of keeping the bowels clear.

Enuresis

Enuresis is the repeated voiding of urine in inappropriate places that may be voluntary or involuntary.Toilet training is a ritual and results in behavior that urine is voided in the toilet rather than in the clothes during the day and the bed at night.By definition, enuresis does not exist until the chlid is 5 years old. Primary enuresis occurs if the child has never been “dry” and secondary enuresis implies that there has been a period of “dryness” (at least 1 year) followed by “wetting.” Again by definition, enuresis is functional in etiology and therfore is not caused by a medical condition.The major cause of enuresis or delay in toilet training is conflict over the use of the toilet between the child and the parent.

                Non-functional enuresis is also called organic enuresis and is urinary incontinence on the basis of a medical explanation.Table 5-2 lists some of the organic causes of enuresis and these should be ruled out in a child who present with enuresis.Mental retardation is a major cause of primary enuresis and psychopathology and stress are important causes of secondary enuresis.Enuresis may be the presenting symptom of a urinary-tract infection and it is more common if diuretics are being taken.

TABLE 5-2. ORGANIC CAUSES OF ENURESIS

Urinary-tract infection

Neurogenic bladder

Spinal cord anomalies

Hypospadias (ectopic urethra)

Constipation

Diabetes

Sickle cell diseaseor trait

Psychosocial/emotional disorder

                The prevalence of enuresis decreases during childhood so that 15-20 percent of 5-year-olds, 5 percent of 10-year-olds, and 2 percent of 12-14-year-olds have nocturnal enuresis.Boys are twice as common as girls to have noctural enuresis but girls more commonly have daytime enuresis.A genetic component seems likely because 70 percent of enuresis children have a firstdegree relative with the disorder.

                Enuretic episodes typically occur at night during the first 4 hours of sleep.The evaluation should include a careful history, including family history, and physical examination.The majority of children with functional enuresis are not emotionally disturbed, and the majority of children with emotional problems are not enuretic.There is higher incidence of enuresis among emotionally disturbed children which might be expected if one of the factors causing enuresis is stress.The most common problems are anxienty, family stress, and immaturity.

                Treatment for functional enuresis involves waiting for spontaneous improvement, which occurs with time.Behavioral therapy includes resricting fluids before bedtime, bladder training exercises, and midsleep awakening for toilet use.Rewarding “dry nights” may be helpful in some children.Night alarms consist of electrodes that activate a buzzer or bell when they become wet.They have been succesful in many cases (50-90 percent) but there is a high relapse rate (25-40 percent) when they are stopped.

                Pharmacologic treatment is useful in the management of enuresis and imipramine (Tofranil) has been widely used.Initial  improvement (50-90 percent) may be followed by relapse (20-60 percent) when stopped.Tricyclic antidepressants require monitoring of drug levels and electrocardiogram,and the may have significant anticholinergic effects resulting in urinary retention, constipation, orthostatic hypotension, and sedation.There could be a risk of accidental or intentional overdose by the patient or sibling.Treatment with anticholinergic agents such as oxybutin,propantheline, or terodiline may be beneficial for those patients with small bladder capacity or an irritable or neurogenic bladder.The synthetic analogue of the antidiuretic hormone vasopressin (desmopressin) has been shown to be useful in the treatment of enuretic symptoms and may help some cases.

Failure to Thrive

The diagnosis of failure to thrive (FTT) is made when weight is less than the 3rd and 5th percentile or there has been significant deceleration in the rate of growth and crossing of 2 major percentiles on the growth curve.Causes are nonorganic, which includes calorie deprivation that is often associated with neglect, and organic.Nonorganic FTT may be from financial constraints,lack of understanding of child feeding needs, poor feeding habits, or a combination of factors.Care of infants and children should include measures of growth at each clinical encounter.

                Growth is rapid during the first year of life and failure to gain weight requires early identification.Type I growth deficiency is associated with normal head growth and greater depression of weight than height.It usually results from an inadequate calorie intake but may also result from excessive loss or utilization of calories.Type II growth deficiency is accompanied by proportional reduction in heigth and weight with preservation of head growth.Causes incluce genetic disorders, endocrine disorders, as well as constitutional growth delay.Type III growth deficiency results in depression of height, weight, and head circumference.It is associated with central nervous system abnormanilities, chromosomal defect, and insults that occur during fetal life or the perinatal period.

                In most cases, the history and physical examination suggest the diagnosis.It is usual to avoid a costly work-up and a complete blood count, urinalysis, and electrolytes will serve as a good screen.If there is potential for physical abuse, a chest X-ray may be indicated.The principal causes of organic FTT include chronic renal disease, congenital heart disease, and thyroid disease.

                The best way to differentiate nonorganic FTT is to provide an appripiate environment and allow the child to feed a decent calorie intake.In all but the most severe cases, there will be weight gain.If the child returns to the same environment, close follow-up is indicated because relapse is likely.A multidisclipinary approach is beneficial in the management of FTT.

Obesity

The definition of obesity is difficult to establish and most consider that greater than the 90th percentile for weight is appropriate.Eighty percent of normal weight cjildren are obese as adults.There are many health risks related to obesity including orthopedic problems, amenorrhea, growth delay, glucose intolerance, and elevated blood pressure and cholesterol.

                Only about 5 percent of case of obesity are related to endocrine and other medical conditions.Genetic, psychological, and environmental conditions account for most of the development and continuation of obesity.Many children have obese parents and their food consumption is greater and activity level less than non-obese children.

                Management involves behavioral modification which is more likely to succed if there is parental involvement, reduced calorie intake over a long period of time, and an exercise program.

Bulimia Nervosa

Bulimia nervosa (BN) is binge-eating with aggressive measures to prevent weight gain, including self-included vomiting or use of laxatives or other medications.There may be periods of fasting between the binges.The prevalence reported in the DSM-IV is in the range of 1-3 percent.

                The etiology is unclear and appears to be most related to personality and family characteristics.It seems to be a coping strategy for many patients.Most patient can be successfully treated as out-patient and many seek help for the condition.The approach to treatment is to establish a regular eating pattern and cognitive behavioral therapy is employed help patients modify their habits.

EATING/ELIMINATION DISORDERS

Anorexia nervosa (AN) and bulimia nervosa (BN) are similar disorders that are often challenging to the clinician.When the two conditions are present in the same individual it is called bulimorexia.It is often difficult to understand the motivation for self-induced starvation or vomiting.The caregiver, as well as the parents, may feel frustrated because there appears to be simple and logical solution to the problem but it is rarely easy to manage.One of major differences between AN and BN is that individuals with BN tend to be outgoing and they are aware that the behavior is abnormal so that they are self-conscious about it.There appears to be increased depression and addiction in both conditions.

Anorexia Nervosa

Anorexia nervosa (AN) is often characterized as an intense fear of becoming obese that does not diminish even when weight is lost.Body image is distorted so that the patient may complain of being overweight despite obvious emaciation.It is important to exclude medical conditions such as diabetes or thyrotoxicosis associated with weight loss.The DSM-III required a weight loss of 25 percent of original body weight or for a growing child, weight that less than 25 percent of expected.The DSM-III-R modified the weight loss to 15 percent to allow for earlier diagnosis.Absence of 3 menstrual cycles in children expected to be menstruating was also added.

The current (DSM) diagnostic criteria are shown in Table 5-1.There are now two types of AN called binge-eating/purging –who lose weight as a result of laxatives, diuretics or self-induced vomiting, and restricting.The restricting subtype is associated with weight loss resulting from severe calorie restriction and/or exercise.The prevalence appears to be about 0.5-1 percent of adolescents between 12 and 18 ears of age.Only 5-10 percent of those diagnosed are male.The disorder is considered to be multifactorial with psychological being only a part.There are contribution from cultural issues that are more common in Western societies that embrace the slim and trim body.There are develpomental and family factors so that picky eaters and young children with digestive disorders are more likely to have symptoms of AN.There is also an association with major depression.

                The approach to management of AN involves refeeding and psychotherapy.Initial treatment involves weight gain and, in the early phases, psychotherapy is postponed until weight gain is established.Before managed care, patients were often admitted to psychiatric hospital but now they are admitted to medical or pediatric wards.The psychotheraphy phase is then conducted as an outpatent.The insurance companies are apt to deny admission for the initial weight gain maintaining that it can be achieved as an outpatient.A team approach to management in a supervised enviroment is more likely to be successful than out-patient care.

                Electrolyte abnormalities are common in severe cases.Refeeding may be difficult and small gains should be sought with goals for weight gain that are realistic.It is reasonable to start with 250 cal above the previous intake and gradual increase as tolerated.A low but significant (0-5 percent) mortality has been reported.

TERMINAL ILLNESS AND SCHOOL

Children and adolescents who have a terminal illness may benefit from continuing in the school because of socialization, but expectation should be realistic.It is usefull to have a plan to allow the teachers and other pupils the opportunity to understand the medical situation and to be aware of the course of the illness.  

                If there is awareness of the potential for a crisis to occur at school, it is necessary to define the responsibility of the school personnel in the event that an emergency situation arises.If it is appropriate, a DNR (Do Not Resustitate) order is written so that the child is not subjected to aresuscitation that is not indicated, should a cardiac arrest occur.There should be a physician order as well as permission from the parents in writing.It is sensible for the child to wear an ID bracelet indicating the DNR order.The school does not legally have to honor the DNR order and, at the beginning of the school year, parents should present the case to the school board for approval.

Death and Dying

Infact mortality is the death rate during the first year of live.The rate varies from country to country.At the beginning of the 20th century in the United States the rate was about 200 infact per 1,000 live birth and in 1994 it was 7.9 per 1,000 live birth.Despite these numbers the United States lags behind many developed countries.Japan has the lowest infant mortality rate and the United States does not figure in the 20 lowest mortality raet countries.After 1 year of age there is a dramatic change in the causes of death with injuries being the most common cause.The death rates have increased since the early 1900s among African-Americans and males.Mortality rates have declined in most areas in childhood expect for injuries.Drowning and burns are the second and third leading causes of death in boys aged 1-14 years and these diagnoses are reversed in girls.Firearms are a major cause of death in boys but not in girls.

                Children who have been ill for a long time often understand more about death and dying than would be expected by their age.This is particularly si if the child has been attending a clinic or has been hospitalized and there has been exposure to other children who have died, perhaps of the same condition.How much information about dying and death is communicated to the child by clinicians is usually discussed with the parents.Adjustment after a child dies may be a very difficult and long process for the family.It is usually considered that after an interval of time, resumption of activity and work are beneficial.

Hospice

The  first true hospice was opened in Sydenham in Southeast London in 1967 and named St. Christopher’s.It was described by Dame Cicely Saunders, who founded the modern hospice movement, as a “safe haven for the dying.” The role of hospice has been to manage pain and the symptoms of disease and to provide grief support for the terminally ill and their families.Hospice means care for the dying.Its role  is to help patients and families make the most of the time that remains and to make the process of dying more comfortable and bearable.It is implied that hospice is not going to cure disease and that dying appears inevitable.Medical care that has been directed toward fighting a disease or an illness is no longer to be necessary.

                There has been a major change in the last few decades about how and where we die.There is more discussion about issues of dying and terminal care has more options.Having said this, the picture for children could be better.It used to be that the majority of children with a terminal illness died in the hospital.Hospices do wonderful work with terminally ill patients and their families and may be a consideration for a child.It is often difficult to make a decision in the midst of a crisis and it helps to have the opportunity to make decision in advance.One of the problems with choosing hospice is coming to the realization that death may be imminent and accepting the finality of the situation.

                The admission policies for hospice may be complicated and should be looked into in advance. There are specific criteria that need to be met and there are exclusions which vary from institution to institution.For example, if the level of nursing care is beyond the capabilities of the hospice, admission will be refused.Although hospice is a place that care for patients who are dying, their philosophy is to make the time of living as positive and comfortable as possible.Hospice provides comfort or palliative care which isdirected at the symptoms of the illness.The technology that is used in conventional medicine is not going to be avaiable in the hospice setting and CPR is not appropriate. 

                The majority of patient who seek hospice have cancer.It is not intended to be an environment for neourologically devastated children who are stable and may have a long life span.Although only 1percent of admissions are less than 18 years of age, many hospices will accept children.The usual admission criteria are:(1) a medical diagnosis of a terminal illness that is likely to end in death within 6 months; (2) the patient is seeking comfort-oriented care rather that attempting to cure a disease or illness; (3) the patient and the family as well as the physician consent to care; and (4) consent is given for DNR (do not resuscitate) that implies that CPR will not be given.

                Hospice functions with an interdisciplinary team.There is  a medical director and nursing and social work staff who coordinate the services.Hospice provides much of the care in the home with home visits at least weekly.The nurse will communicate with the physician.If the chlid is at home, much of the responsibility of the nurse will be to be provide education to the caregivers.Between visits, the family will have access to an on-call nurse who will be able to assist.

                The social worker responds to issues related to the family and the environment.Much of the work will involve insirance issues, financial issues, legal questions, and helping with the arrangements after death.It is likely that the social worker will provide counselling for the patient and family.This will mostly focus on the present situation, resolving conflicts and fears related to dying.

                The hospice team may include an aide who functions in many ways.Aides provide care for those unable to look after themselves. This may include bathing, mouth or hair care, skin care and generally helping in the activities of daily living.Aides will tend to visit the home a few times a week for 1-2 hours per visit depending on the needs of the family.

                Most hospices will have a chaplain who is able to provide spiritual care for the terminally ill.This tends to be nondenominational and nonsectarian.Alternatively there will be someone on call in the community who can provide assistance that is appropriate for the family.

                At some point there may be consideration that the care can no longer be provided in the home and in-patient hospice services may be appropriate.In patient hospice care may be in a freestanding structure or may be part of a hospital or nursing home that has been designated for such care.Such units usually are able to admit patient for short periods.

                There are various types of hospice.They may be communitybased, independed nonprofit corporations that are governed by a community board of directors.Home health agency-based hospices are part of home-care agencies which may be a separate unit within the organization or intergrated into the home0care programs.Hospital-based hospices are part of the parent organization but still may provide services in the home.

                Certification of hospices implies that they are eligible to participate in Medicare and if the state has a Medicaid hospice benefit (half do) then they are eligible also for Medicaid.Joint Commission on Acccreditation of Healthcare Organizations (JCAHO) no longer accredits hospicesn and so there is no national program for evaluation of hospices.Medicare benefits are paid on a per diem basis depending on the level of services.It is implied that all of the services that are needed will paid from this flat rate.   

HOSPITALIZATION AND SCHOOL

Many chronic conditions require hospitalization and it is necessary to consider schooling in this context if the time away from school is significant.Often the hospital will have some resources for education but it is sensible to involve the school officials so that the specific needs of the child are met.Education within the hospital enviroment has the potential to reduce the stress and disruption of the hospital stay.

SCHOOL ISSUES

If medications need to be given during the time at school there has to be a legal prescription and written permission from the parents.There needs to be provision for safe storage and means of access so that they can be given at the appropriate time.Some medicine, especially asthma medications, will be prescribed to be given when necessary and there needs to be arrangements so that they can be given.There may be problems of access, particularly if the school campus is large or if the child avoids going to the school nurse because of “not wanting to be different.”

                Absence from the school because of chronic illness may make it difficult for the child to keep up with the class.Stress and anxienty may result in school phobia with subsequent absenteeism.If prolonged absence is necessary, home instruction should be arranged.Mobility in the school may be a problem.If the child is unable to walk between classroom or buildings, a wheelchair may be useful.

INDIVIDUAL EDUCATION PROGRAM

The Education for All Handicapped Children Act provided for an Individualized Education Program (IEP) for each child referred for special education.These services may be provided in a regular classroom, a special classroom or facility, at home,or in the hospital setting.”Mainstreaming” implies that a child is receiving special-education services within the regular school system.This allows the greatest education potential for the child who spends most of the time in the regular classroom but may receive extra services such as speech or occupational or physical therapy in another setting.

                The IEP requires that each child be evaluated by a multidisciplinary team to define the specific educational gaols.There needs to be a measurable goal and time line for achieving these objectives.

Educational Goals

Education provides the child with the means to live and to work in the adult world.School dominates the life of a child and more time is spent there than anywhere else except home.Schooling is important for children with chronic conditions as many children do not get a chance to socialize with other children expect at school.Integration of children with chronic conditions may be associated with resistance from the school or other parents.School may not have the facilities to safely provide for the needs of the medical condition.Many schools do not have school nurses.Children with disabilities are entitled to receive therapy that will help in their overall education.This includes speech, physical, and occupatioal therapy.Unfortunately, the children with mild disabilities may not be eligible for special services.

Adoption

There are about 150,000 adoption each year in the United States.More than half the children adopted  from foster care are adopted by the foster parents that have been looking after them.Domestic newborn adoptions have potential maternal and infant problems.The mother may have a history of mental illness or of sexually transmitted or other infectious diseases.The infant may have prematurity, a congenital anomaly, a genetic, disorder, or have been exposed to drugs or toxins.In many cases, the medical and other previous historybefore coming to the foster family is not available.Many foster children  have chronic medical conditions that have been inadequately diagnosed or treated.

                International adoption imply that the child was born in a foreign country.Although it is intuitive that there should be testing for hepatitis B, syphilis, TB, and so on, it is not recommended to insist on this before the child comes to the United States.Use of contaminated needles places the child at risk and the result may be unreliable or even fabricated.A videotape of the child may provide information about the development of the child.Many children have undiagnosed chronic illness and developmental delay is common.

Foster Care

Children tend to be placed in foster care because their parents are unwilling or unable to provide for their emotional and developmental needs.This result most commonly because there is  single parent, poverty, and inability to provide the basic needs.Many children are placed in foster care because they have been exposed to illegal substances or they have been abused or neglected.Children who are in foster care may have chronic illness and some are technology-dependent which means that the foster parents need to be capable of providing extra care.

                Foster care is usually with good parents, but children in foster care tend to be shorter and have a higher incidence of chronic medical problems.In addition, there is a higher incidence of emotional problems ans school difficulties.The emotional problems vary with age.Very young children may have eating and sleeping problems.Early school-age children may have hyperactivity and discipline problems.Adolesents may exhibit risky behaviors including substance abuse, sexual experimentation, and violent activities. Depression is common, especially in order children. It must be remembered that physical and sexual abuse and children neglect are not uncommon in foster homes.

Impact on The Child and Family

Impact  on the Child

There  is a direct impact of a chronic illness that affects the child by altering the developmental potential.This varies with the illness and the limitations that result as well as the severity and duration.There are indirect effects that result form these changes and that affect the social and psychological behavior of the child.If the illness does not have potential for cure, the goal of therapy are to minimize the effect so that the child can function as near to normal as possible.

                Illness that produce physical changes that are visible toothers tend to produce more difficulties than illnesses that cannot be recognized.Therapy for an individual child must take into consideration the treatment of the condition as well as the indirect effect which may not be so obvious.

                Disability can be measured in term of time away from school or confined to bed.On average, a child loses 5.3 days per year because of illness (acute and chronic).

                There is increased morbidity in children who do not have access to medical care.This includes the homeless, children living in poverty, children with chronic illness and and foreign-born children.

Impact on the Family

It is usual for a child’s chronic condition to impsct the rest of the family.After the diagnosis of chronic illness there is a period of adjustment.There is an intense emotional period that result from learning that there is a chronic illness.The extent varies with the condition and its expression.The adaptation over time may lessen or worsen the situation.Parents who have children with special needs have more stress than those who do not encounter such problems.

                There are several emotional stages that family members may experience.Not everyone goes through all the stages and it is sometimes difficult to progress to the next stage.The typical emotional reactions are shock, anger, resentment, guilt, denial, and sadness.If family members progress to the positive stages, then acceptance and a resolution to make the best of the situation results.”Emotional baggage” of the earlier  reactions may persist and get in the way of the healing.

                The additional burden of a child with a chronic illness can have either a positive or a negative impact.The positive impact can be the ability to look after a child who needs help and to provide that help.The negative relates to the inability to provide for the emotional,physical, or financial needs of the child.

                Divorce continues to be very common in the United States, although the rate peaked in 1979.Almost one-half of divorces affect children and about 1 million chldren each year are involved.Divorce has a major effect on children.Although chronic illness of the child does not seem to be a major factor on the decision to divorce, it certainly will impact the child.

                The numbers of dual-earning parent families also has increased recently.The role of working mothers will become more difficult if the demands of care of a chronically ill child require their presence at home.

                Single-parent status result from divorce, separation, or death.There may be birth or adoption of a child by a single person.The number of children who are being raised in single-parent households is increasing yearly.Children acquire stepparent if the parent remarries.Thr involvement with the stepparent varies wiyh the custody issues so that if the parent who is rearing the child remarries the stepparent will acquire the role of parenting.

                The financial impact of a child with chronic illness can be considerable and increases the stress on the family.Expenses for direct health care, home care, special diets, counseling, and equipment may only be partly covered by insurance.The extras, which include transportation, utilities and loss of time from work, will not be reimbursed.There may be health care “caps” on insurance that limit the amount of reimbursable services.

Disease Prevention

There is potential to reduce or prevent chronic disease in children which may be achieved by awareness and education.Unfortunately, the majority of chronic conditions are not able to be predicted or prevented.The management of chronic illness includes measures to avoid futher complications that increase morbidity.Examples include anticipatory  guidance, which involves discussing age-appropriate intervention of the specific immunization needs is essential.

Preventive nedicine tends not to be a high priority and it needs to be.Acute care medicine dominates medical teaching and prevention that may take years to achieve may be difficult to sell to those who pay the bills.Also the consequences of risky behaviors and the later development of illness may not be taken seriously enough.

Health Promotion

The goal of primary care pediatric includes heping families achieve optimal growth and development of children.This includes many activities such as growth and development as well as illness prevention.It is reasonable to recommend that the guidelines for all children should be applied in the presence of chronic illness.The medical management of the child with chronic illness is not the only component of care.There are many lifestyle and other non-medical considerations.Some of these components, such as good nutrition, need to be added and some, such as smoking and drugs, need to be avoided.Education is one of the major keys to health promotion.This needs to be included in the overall care plan and should be considered in the light of the family situation.The plan needs to be realistic and achievable, otherwise it will not be followed.It will need to be evaluated at each visit and reinforced as necessary.

A full range of preventive and therapeutic services are covered by Medicaid which include hospital care,physician and out-patient services, laboratory, and skilled nursing services.Some states include eye, dental, drugs, and home health care.Eligibility varies from states but the major criteria include receiving welfare or SSI.This may be through AFDC (Aid to Families with Dependent Children) which is dependent upon income relative to the poverty level.

An important program is the Early Periodic Screening Diagnosis and Treatment Program (EPSDT).This enables children who are eligible  for Medicaid to receive health screening and, if health problems are identified, the cost of diagnosis and treatment are covered.

Managed care programs associated with Medicaid may be more beneficial for children with chronic conditions that straight Medicaid.This is because there may be a wider range of services with better coordination of care; however, accses to specialists may not be as easy.

Children who are dependent on mechanical ventilation or other technologies may be eligible for home-care coverage under the Medicaid Model Home and Community Based Waiver.The purpose for the coverage is to provide home health nursing and services to reduce the need for continued hospitalization.This program should lead to considerable cost savings.

Supplemental Security Income (SSI), Title XVI of the Social Security Act, was extended in the 1976 to include children under 16 with disabilities.This is designed to help recipients to become as self-sufficient as possible.Although there is no direct payment of costs for medical care, the recipients are eligible for care under Medicaid which then helps pay for the medical care of the child with a chronic condition.

The requirement for eligibility are complex.The financial level is set at a level below the poverty line (in 1994 it was 74 percent) and dependent on the cash level of the applicant’s resources.

Immunizations

The overall goal of immunizaton in children is to prevent illness and to reduce the potential for spread of communicable diseases.It becomes even more important to reduce the morbidity associated with chronic diseases and so plays an important role in care.The Red Book is published every 3 years by the American Academy  of Pediactrics and updates are provided annually in the journal  Pediatrics.The recommendations are frequently changed as new information becomes available, including better vaccines and protocols.For these reasons specific schedules for immunization will not be detailed here.It is the responsibility of the primary  care provider to ensure that the recommendations are followed and that this is modified based on the diagnosis of the chronic condition.
Immunization may be active or passive.Active immunization involves administration of all part of a microorganism (that may have been modified) to induce an immunologic response that mimics the natural  infection but does not provide a risk to the recipient.Some agents result in life-long immunity, others require re-immunization at interval.The vaccine may be and attenuated, or killed (inactivated).Passive  immunization entails administration of preformed antibody in the form of immune globulin (gamma globulin) that is derived from pooled plasma of adults.It is used to replace immunoglobins in antibody deficiency disorders, especially in congenital or acquired B-lymphocyte deffects.It is used in certain diseases to suppress a toxin (e.g.,botulism) or if a high-risk individual is exposed (e.g.,leukimia patient who is exposed to varicella).There are hyperimmune globulins that are specific so that high concentrations of the desired antibody are achieved.These include hepatitis B (HBIG), rabies (RIG), varicella-zoster (VZIG),cytomegavirus (CMV-IGIV), tetanus (TIG), and respiratory syncytial virus (RSV-IGIV).Some are given intramuscularly and some intravenously.
All immunization requires informed consent.Although they are very safe,they are not devoid of side effects.Hypersensitivity reactions are rare.Allergy to eggs has been associated with reactions to influenza and yellow fever.A history of a systemic anaphylactic reaction to egg ingestion,such as generalized urticaria,hypotension or airway obstruction, contraindicates the use of “flu or yellow fever vaccination.” MMR (neasles, mumps, and rubella) is not contraindicated by egg allergy, but 90 minutes’ observation following administration is recommended.
Children with chronic illness may require specific recommendations for immunizations.For the most part  the administration of immunization follows the recommendation for all children.Live-bacterial and live-virus vaccines are contraindicated in patient with congenital disorders of immune function.For the child who is receiving immunosuppresive therapy, the risk of the immunization is balanced with the risk of the potential illness.For example, live-virus varicella immunization in a child exposed to varicella with acute lymphocytic leukemia in remission may be justified.Inactivated vacciness and immune globulin are not risk to immune-compromised chlidren.However the immune response may be diminished with reduced efficacy of the vaccine.The Red Book provides guidelines for administration of vaccinations for children who are receiving corticostreroids.In addition, children  who are immune comprosided following transplantation, especially bone marrow, will specific recommendations for immunization.
HIV infection in children required the usual routine vaccinations of DTP, hepatitis B, and Hib expect that oral poliovaccine is contraindicated and inactived poliovirus should be given.Unless there is severe HIV immunosuppresion,MMr should be given but varicella vaccine should not be given.
Asplenic children, including those who have sickle cell disease or post-splenectomy, have an increased risk for fulminant bacteremia, which has a high mortality rate.Streptococcus pneumonia and Hemophilus influenzae  type b are the most important pathogens, but other bacterial infections and malaria are more given to all children over 2 year of age and Hib given in the schedule recommended for all children and if previously unimmunized.Meningocconal vaccine is also indicated.Many children will, receive penicillin daily for pneumonoccal prophylaxis.
Children with many chronic diseases (e.g., cystic fibrosis) are at increased risk for complications of influenza and should receive an annual “flu shot.”

Multidisciplinacary Care

Many chronic illness have features that are best managed by a team of caregivers.It is usefull to have a leader of the team who can be the PCP or a specialist, but in could be a  nurse manager or a social worker depending on what needs to be coordinated.If the medical care is complex, a physician or nurse will usually take responsibility to ensure  communication between clinicians.

Case management of complex medical problems has advantages.It improvers of communication and makes it easier to provide the necessary services.This becomes incresaingly important as managed care impacts access to care.The case manager can be the advocate of the patient  and family and this role has been incorporated into Public Law 99-457, the Early Intervention Program for Infants and Toddler with Handicaps.

Primary care providers who are responsible for the care of children need to consider the role that is in the best interest of the child.They should consider their role, as well as how the various caregivers should inter-relate.They need to ensure that the family is aware of the many options available.

Speciality Care

The specialist or consultant may play a major role in the management of children with chronic illness.The specialist may be the first to consider the diagnosis or may actually confirm the PCP’s suspicions.Depending on the condition, the specialist may be pivotal in defining the treatment plan and will be the one to provide follow-up for the problems that are specific to be condition.The degree of involvement will vary with the diagnosis and the organ systems involved.Many children receive the majority of their medical care from specialists and consultans.The ideal approach to management is that there is continuity provided by a primary care physician who may be a pediatrician, a family practitioner, or a generalist.On occasions the specialist will function as a primary caretaker.This has merit if the approach of the consultant is able to be broad-based and when the condition has a dominant system involvement in which the consultant is expert.
Subspecialist may have limited knowledge of so-called normal pediatric care which implies awareness of appropriate growth and development and of how to achieve this. They also need to be able to involve the various consultans that are indicated.The devlopment of specialty services has also led to some problems.There is increased difficulty to access specialty care and care tends to be fragmented.Priority approval is often necessary before services are paid for and, in many situations that are deemed not an emergency, there may be delay before treatment is initiated.This can be frustrating to the family as well as to the caregiver.

Primary Care Provider

In the United States, the primary care provider (PCP) has been placed in the position of coordinator of care for many patients,particularly those enrolled in managed care health plans.In many parts of the world the general practitioner function in this role.The PCP should be an integral part of the care of a child with a complex chronic condition.The importance of this is that the PCP is in a position to be the advocate for child and family and to ensure that there is access to the care that is indicated to allow optimal growth and physical and mental development.The PCP considers all the opportunities for care for the whole child and family.This implies that they are in the best position to provide a broad approach to care.If the family is able to define an individual whois able to provide ongoing continuity of care and it is an individual with whom they have good rapport, it is an excellent basis for optimal management.If the PCP ndertakes the role of coordinator of care, there will need to be a commitment to providing the resources that are necessary.This will involve time and money, because the time needed to provide care for a child with a chronicillness may be considerable and may not be reimbursed at an appropriate level.

The role of the primary care provider and the involvement in the care of health management of children has been proposed to be at differenf levels.Although this was inspired in the era before managed care and could theoretically be updated, it does provide a framework for provision of care.

Level 1 care is routine health maintenance for healthy children.This may exclude children with chronic conditions who will be referred to another level either because the practitioner  is unwilling or unable to provide an appropriate level of care.

Level 2 care is the perfomance of task-oriented care which is independent of primary care but  can supplement this.Examples include provision of specific care that the subspecialist requests but does not implement, such as immunizations or ordering laboratory tests.In the managed  care environment this may be invoked or forced by the managed care gatekeepers so that costs can be saved.

Level 3 care is when the primary care provider is the central figure in the care of the child with a chronic disorder.The provider is experienced in management of the more complicated child but will refer for specialty care as ondicated.It required a greater knowledge base and commitment than routine healthy  child management.

Level 4 care represents comprehensive primary healthy care incorporating the complex requirement of the chronic condition and its relationships with the child and the family.Of necessity, the practitioner will have broad knowledge of the chronic condition as well as the ability to provide excellence of primary care.The provider will utilize subspecialty expertise and acces community resources that are indicated.The practitioner works with the specialist without relinquishing care to them.

Level 5 care means that the primary provider becomes the case manager for the family of the child with a chronic condition.This involved facilitating a short- and long-term plan of care and assisting in the implementation of this plan.The primary care provider is the advocate for the patient and family and evaluates the outcome.This level of care requires coordination and communication between all parties,meaning the patient and family, to the specialist and the health care professionals involved in the provision of care.

Other clinicians including physician assistants and nurse practitioners may provide primary care.Although they often work under the supervision of a physician, their roles are increasingly becoming independent and they provide much of the ongoing care that is important in the management of chronic illness.They also provide much of the education that is necessary to allow the family to understand the condition and the implications of treatment.

Health Maintenance

The diagnosis of a chronic illness may be made at time.Some disorders are diagnosed before birth,many in the newborn period,and others during childhood.After diagnosing a chronic illness,the next step is to address the medical issues.Who will provide care?Where will it be provided?What is the best way to access the system?When the diagnosis is made,various provider options are available but any choices made are likely to changes as time goes on.
The changing environment of health care in the United States makes it difficult for the patient,who is now the consumer,and the family to understand all the choices.Managed Care Organizations (MCOs) have been established to provide optimal health care while at the same time reducing costs.MCOs cover a multitude of approaches to providing care.They include Health Maintenance Organizations (HMOs), which include Kaiser Permanent and a series of groups of physicians or providers who are united together.Examples includes PPOs, which are Preferred Provider Organizations, and IPAs which are Independent Physicians Associations.
  He barriers of access to medical care for children are financial,systems,and knowledge-based.Children with disabilities are more likely to receive physician care if they have insurance than if they do not.It would make sense that the more that health care services are needed,the more they are accessed,but in reality the poor,uninsured,minority,and single-parent children will receive less medical care.This may be because of the barriers to care as well as an unwillingness to seek care.One study showed that uninsured children received 40 percent less care than their incured counterparts.The goals ot Medicated nad Supplemental Security Insurance (SSI) programs have improved access to health care for many poor families in the last 20 years,but many more who needs care do not receive it.In addition,there are many families who utilize limited resourcess who do not need or benefit from them.
Managed care  has problems that are the result of decisions being made on the basis of cost rather than necessity.Outcome measures have been implied as justifying the sharing of cost and revenue.This does not justify withholding treatment for a specific individual who may benefit fro therapy.A treatment that has the potential to reduce costs,for example an intervention that will lower hospitalization rates,should lead to its consideration,but if it is not recognized by the payor,it may be denied because the rules say so.Medicaid benefits vary considerably from state to state and while the regulations are appropriately restrictive they are impossibly complicated and the bureaucracyso involved that they do not assure that the patient and families who need the most,get the most.Within the last few years,studies have shown that a significant proportion of children were without health insurance for 1 year, and that of the children with chronic disorders,76 percent had private insurance , 11 percent had Medicated, and 13 percent had no insurance.
There are many levels of medical care and some of the levels may be accessed more easily than others.In- and out-patient care,drugs,home care,durable medical equipment,various therapies (e.g., respiratory, physical, occupational), mental health, dental, and eye care may all have different levels of accessibility and payment.Choosing a health plan involves learning what options are available and selecting the one that has the most potential to meets the needs.If there is a child with a chronic disorder and different options are available, it is helpful to discuss this with a clinician involved with the care.Unfortunately, the selection of the health plan is often dependent on the occupation of the parent (whose employer or insurance company provides the alternatives) rather than on the needs of the child with the chronic disorder.
The additional needs pt many of the conditions described also put a burden on the health care system.Because of the complex nature of many conditions and the treatment that they require, there is a financial burden as well as a systems problem.Multiple specialist,surgical procedures, and complex therapies tend to be expensive.Capitated managed care systems are not geared to providing care for small populations of medically needy children who require techonologically advanced and specialized care, which tends to be very expensive.Cost effectiveness   specialized care can be achieved but the question is where should the line be drawn as to how much care is provided and who should draw that line?In the last few years the lines have been drawn at the point where there is actually a reduction in the level of care that is provided for many patients who were able to receive it in the past.Outcomes research will reveal how much this impacts morbidity and mortality.