Heller’s Syndrome or Disintegrative Psychosis: Symptoms, Treatment, Causes

Heller’s syndrome is a disorder during childhood that is disintegrative. Heller’s syndrome is also called as disintegrative psychosis or childhood disintegrative disorder. This condition is rare and children who have attained the age of two years often loose skills such as communication and the social skills.

Heller’s syndrome or disintegrative psychosis is part of a wider spectrum of disorders known as autism spectrum disorders. Individuals with heller’s syndrome or disintegrative psychosis will have normal development in the early stages which is not the case in other autism disorders. This regression is abrupt due to sudden loss of skills. Also, autism may develop much earlier than heller’s syndrome or disintegrative psychosis.

Heller's Syndrome

The approaches taken for treating heller’s syndrome or disintegrative psychosis is involving a combination of behavior therapy and medical.

Causes of Heller’s Syndrome or Disintegrative Psychosis

It has not been known as to what causes heller’s syndrome or disintegrative psychosis. The cause has not yet been determined through sufficient research.

Signs and Symptoms of Heller’s Syndrome or Disintegrative Psychosis

Skills that were acquired previously by a child can be lost dramatically if they have heller’s syndrome or disintegrative psychosis. There are multiple signs and symptoms. The areas that are mainly affected are:

  • Language inability to converse or speak.
  • Socials skills, includes difficulty to relate with others.
  • Play losing interest in games or various plays and activities.
  • Motor skills, movements will be hindered dramatically, for example grasping objects, walking among other mobility skills.
  • Bladder/bowel control, loss of toilet skills in a child who might have been trained previously.

The acceleration of this condition may span from days to weeks or gradual development over a length of time.

When to Visit a Medical Practitioner for Heller’s Syndrome or Disintegrative Psychosis?

Loss of developmental milestone should be the alarm despite the fact that children have different development rates of this condition. Loss of play, motor, social, thinking (cognitive), language, or skills like self-help like feeding and toilet training skills in a sudden way should be that time that you conduct a doctor. Talk with your doctor if your child has developed gradual loss in any developmental sphere.

Tests to Diagnose Heller’s Syndrome or Disintegrative Psychosis

Diagnostic Criteria for Heller’s Syndrome or Disintegrative Psychosis

The Diagnostic and Statistics Manual of Mental Disorder has outlined the criteria that must be met for a child to receive diagnosis of heller’s syndrome or disintegrative psychosis. The below are some of the summary of the criteria that must be met according to the American Psychiatric Association. Insurance companies refer to the manual when reimbursing for treatment and also the mental doctors use it when diagnosing mental conditions.

The Development within the first two years being normal for Heller’s Syndrome or Disintegrative Psychosis

Attributes that are considered regarding normal development includes: self-care skills, play, verbal/nonverbal communicating skills, motor and social relationship.

Losing Previously Acquired Skills Significantly

Two of the following platforms regarding skills will be affected in heller’s syndrome or disintegrative psychosis. Despite the fact that it had been developed previously:

  • Expressive language. The ability to utter words.
  • Receptive language. Ability to discern verbal communication and sign language.
  • Adaptive behavior. Self-care skills and social skills.
  • Control of the bowel and the bladder.
  • Playing skills.
  • Purposeful movement of the body voluntarily (motor skills).

Lack of Normal Function due to Heller’s Syndrome or Disintegrative Psychosis

Two of the following areas are functions that will occur due to loss or lack of normal function in heller’s syndrome or disintegrative psychosis:

  • Interacting socially. Connecting socially will be a problem for the child and it may be hard to interact nonverbally. There are feeling and cues that your child may lack like sharing ability, understanding, recognizing, responding and making friends with age mates.
  • Communication. Starting and maintaining conversations that may be accompanied with inability to speak or stammering. It will be hard for your child to discern make-believe or ”get” imaginative play.
  • The patterns of interest activities and behavior will be stereotyped and repetitive rituals and routine will be specifically attached to your child, flapping his or her hands in a rock and spin manner (mannerisms and motor stereotypes). It will be difficult for your child to advance to constant changes.

Developmental Screening Test for Heller’s Syndrome or Disintegrative Psychosis

Development screening should be performed constantly by the doctor of your child during your regular visits to the clinic or if your child has delayed development or has lost the skills appropriate to his/her age.

Evaluation diagnosis will be the next viable alternative after you doctor has detected signs or symptoms regarding development disorder or delayed development. You may have to see a therapist of speech, a physical therapist, occupational therapist, child psychologist, neurologist (a doctor specializing in nervous system and brain condition), a pediatrician (doctor who specialize in developmental and behavioral problems), occupational therapist and audiologist (hearing specialist).

The following are some of the tests that can be performed by these professionals for heller’s syndrome or disintegrative psychosis:

  • Medical history. The time which the development skills were lost will be deeply discussed in detail. This is through interviews and emphasis regarding the age, when the developmental milestone was reached. The clue regarding the time that your child reached the developmental milestone can be achieved through photos or videotapes to vividly recall the time.
  • Neurologist test. The abnormalities of your baby’s nervous system or the brain will be detected through tests conducted by neurologist. The electrical activity of the brain might be measured through imaging tests to allow the neurologist to detect the brains condition.
  • Genetic test. If there is a disease or a condition that might be inherited through the family it will be detected to chromosomal abnormality when a blood test is conducted.
  • Language and communication tests. Deep tests for your child’s condition will be done through gesture like; facial expression, speech rhythm, gestures and posture are nonverbal characteristics that will also, communication by signs and the ability of your child to interact with others (body language, tone of voice, social cues and the ability to comprehend words).
  • Audiology (hearing) test. This is a test for checking problems related to hearing or deafening.
  • Vision test. Vision problems can be detected here or blindness.
  • Behavior inventory. Repetitive behavioral responses that are repetitive are rated formally in a checklist and scale used by the doctor. Example of such characteristics are being under sensitive or oversensitive, normal sight response, social interaction, play sills, sensitivity to sound and touch in the environment and repetitive movements.

Development Tests for Heller’s Syndrome or Disintegrative Psychosis

Your child skills will be compared to those his/her age mates. This will allow the doctor compare through several development tests for heller’s syndrome or disintegrative psychosis. The following skills are the test measures:

  • Large motor skills. It entails running walking, throwing, climbing and jumping.
  • Sensory skills. This are the routine bodily responses like touch (tactile), taste, smells, sights, and sound environmental experiences.
  • Fine motor skills. Using the fingers and hands to manipulate objects that are small for example scissors, pencil and buttons
  • Cognitive skills. These are skills that involve paying attention, thinking, concentrating, following direction and problem solving.
  • Play skills. The playing capability of your child with both adults and other children and also objects and toys is what will be observed. The playing behavior (goal-directed, varied, imaginative, and purposeful) is monitored.
  • Self-care skills. The skills involved are brushing teeth, dressing, feeding and toileting.

Your health care professionals will be able to use the test results to be aware of the underlying neurological or medical condition. This will enable the health care team to discern the cause of the disorder and rule out other diseases or conditions and thus administering the right diagnosis. The best treatment scheme for your child for heller’s syndrome or disintegrative psychosiscan be developed in this consideration.

Treatment for Heller’s Syndrome or Disintegrative Psychosis

A cure for heller’s syndrome or disintegrative psychosishas not yet been found. The same procedure for treating autism is administered in this disorder as well. Symptoms can be lessened through the following treatments for heller’s syndrome or disintegrative psychosis:

  • Medications. Medication that treats heller’s syndrome or disintegrative psychosisdirectly is not there. Medication will sometimes reduce excessive repetitive movements or impulsiveness through the use of medicines that controls depression anxiety and medications that are antipsychotic. Epileptic seizures can be controlled by anticonvulsant drugs.
  • Behavior therapy. Caregivers, teachers, parents, occupational and physical therapist, speech therapist, and psychologist. Loss of self-care, social and language skills may be elevated by conducting programs that deal with behavior. Behavior therapy must be approached consistently by teachers, caregivers and all the health care team.

Although there is a variation of behavioral abilities between children with heller’s syndrome or disintegrative psychosis, those with autism have better outcome. The improvement after the loss of cognitive, language, self-care and social skills will be unlikely to materialize. Long term care facility or residential care within a group home may be necessary for children with this disorder later in life because lifelong support will be needed with this activities being conducted daily.

Coping with Heller’s Syndrome or Disintegrative Psychosis

Heller’s syndrome or disintegrative psychosisis a serious but a rare condition. Support will be needed for any member of the family who is victim. Below are various suggestions for coping with this syndrome:

  • You will need support from other family members. Suggestion and helpful encouragement can be attained from families having victims of autism spectrum disorders (ASD). Support groups have been initiated by some communities to consult parents whose kids have ASD.
  • You should take time with your own self and members of your family. Your family life and marriage will most likely be stressed during the caring period of a child with heller’s syndrome or disintegrative psychosis because this will be a full time job. Spending time with friends and other loved one’s is also important. You have to relax, exercise, and enjoy your favorite hobby schedule activities for your family. In order to prevent caregiver burnout you may opt to seek respite care regularly.
Pramod Kerkar, M.D., FFARCSI, DA
Pramod Kerkar, M.D., FFARCSI, DA
Written, Edited or Reviewed By: Pramod Kerkar, M.D., FFARCSI, DA Pain Assist Inc. This article does not provide medical advice. See disclaimer
Last Modified On:May 1, 2017

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