What is mental Retardation?

Mental retardation (MR) now known as intellectual disability (ID) is a developmental problem which is manifested during a child's years of development (i.e. 0 -18 years old).

According to the World Health Organization (WHO) mental retardation is defined as "a condition of arrested or incomplete development of the mind, which is especially characterized by impairment of skills which contribute to the overall level of intelligence". Individuals with mental retardation generally exhibit sub average functioning. They display difficulties in self adaptive areas such as communication, self-care, home living, social skills, community use, self-direction, health and safety, academics, leisure, and work.

There are four levels of retardation: mild, moderate, severe, and profound. According to the prevailing international classification system, MR can be classified into the following grades according to its severity:

Level of Mental Retardation IQ Range Degree of Functioning
Mild Mental Retardation IQ range: 50 to 69
  • Takes longer to learn to talk, but can communicate well once he or she knows how
  • Fully independent in self-care
  • Has problems with reading and writing
  • Is socially immature
  • Is unable to deal with responsibilities of marriage or parenting
  • May benefit from specialized education plans
Moderate Mental Retardation IQ range of 35 to 49
  • Slow in understanding and using language
  • Limited ability to communicate
  • Basic reading, writing, counting skills
  • Could be a slow learner
  • Unable to live independently
  • Can get around on own
  • Can take part in simple social activities
Severe Mental Retardation IQ range of 20 to 34
  • Noticeable motor impairment
  • Severe damage to and/or abnormal development of central nervous system
Profound Mental Retardation IQ of less than 20
  • Unable to understand or comply with requests or instructions
  • Is immobile
  • Uses very basic nonverbal communication
  • Cannot care for own needs
  • Requires constant help and supervision

What causes mental retardation/ Intellectual disability?

Mental retardation can be caused by any condition that impairs the development of the brain before birth, after birth or early childhood years. Several hundred cases have been discovered but, in about one third of the people affected the cause remains unknown. Enlisted are the few known risk factors or causes that can lead to mental retardation:-

  • Infections (either at birth or occurring after birth)
  • Genetic abnormalities (such as Down syndrome, X syndrome, and PKU [phenylketonuria])
  • Metabolic (such as hyperbilirubinemia, very high bilirubin levels in babies)
  • Toxic (intrauterine exposure to alcohol, cocaine, amphetamines, and other drugs during pregnancy)
  • Nutritional (such as malnutrition during pregnancy)
  • Trauma (before or during birth such as oxygen loss or early childhood sickness, such as whooping cough, measles, or meningitis)
  • Environmental factors (lead or mercury poisoning)
  • Unexplained (this largest category is for unexplained occurrences of intellectual disability)

What are the symptoms associated with mental retardation?

Developmental aspects affected by mental retardation include;

  • Attention and concentration is poor
  • Memory problems.
  • Language ability
  • Gross and fine motor coordination
  • Learning, logical thinking and problem-solving abilities
  • Social and self-care skills
  • Ability to control emotion and behavior

The child's abilities in the above aspects are significantly lower than children of comparable age that causes difficulties in activities affecting daily life.

What are the treatment options available for MR?

An important step in the diagnosis of mental retardation is to obtain a comprehensive patient and family history. Intelligence is assessed on the basis of IQ. The Wechsler IQ tests for children and for adults are the most frequently used individual IQ tests. As per the World Health Organization (WHO), the IQ of a patient with mental retardation is equal to or less than 70. The available treatment methods are geared towards an individual's specific problem areas and the overall level of impairment.

The main goal of the treatment is to develop the person's potential to the best of his/her ability and to integrate them back into society.

The treatment of individuals with mental retardation is based on an assessment of social, educational, psychiatric and environmental need. Mental retardation is associated with a variety of co- morbid psychiatric disorders that often require specific treatment, in addition to psychosocial support. Medical management followed by supervised rehabilitation plays a great role in helping such individuals. Some treatment options that can be considered include:

Education for the Child: Educational settings for children who are mentally retarded should include a comprehensive program that addresses training in adaptive skills, social skills and vocation. Particular attention and focus should be given to improving communication skills and social interaction.

Behavior therapy: Behavior therapy can be used to shape and enhance the social behavior and to control as well as minimize aggressive and destructive behavior.

Cognitive therapy: Cognitive therapy, such as dispelling false beliefs and relaxation exercises with self – instruction has also been recommended for mentally retarded person who can follow instructions.

Psychodynamic therapy: Psychodynamic therapy has been used with patients and their families to decrease conflicts about expectations that result in persistent anxiety, rage and depression. The difficulties in adaptation among the mentally retarded persons are widespread and so varied that several interventions alone or in combination may be beneficial.

Family Education: One of the most important areas that a clinician needs to address is educating the family of the affected individual about ways to enhance competence and self-esteem while maintaining realistic expectations for them. Parents of children with mental retardation would benefit from continuous counseling or family therapy and should be allowed the opportunity to express their feelings of guilt, despair, anguish, denial and anger.

Medical Management: Medical management for treatment of behavioral and psychological symptoms in mentally retarded patients are much the same as for those patients who are not mentally retarded. For medication a consultation from the psychiatrist is a must.

None of the conventional treatments available help repair the underlying brain damage that is seen during mental retardation. Stem cell therapy, however, helps to a great extent in improving the affected symptoms. It is known that stem cells work at their best when combined with rehabilitation.

How stem cell therapy works:-

The management of mental retardation requires a multidimensional approach to address to the various impairments. However, most of the patients reach a stationary stage with prolongs use of pharmacological, rehabilitative and surgical therapies. Stem cell therapy on the contrary, along with management of impairments, attempts, to stimulate the nervous system to repair the damage in the nervous tissue seen in affected individuals.

Cellular based therapies or more specifically, autologous (self derived) bone marrow derived stem cell therapy has found to show a promising premise in the arena of management of mental retardation.

Stem cells are believed to possess special properties of self-renewal as well as differentiation, which allow them to grow into different cell types. The stem cells also bring about changes in the surrounding tissue either altering the micro- or macro environments of the damaged tissue and these paracrine effects include changes in the internal repair process of affected neurons, immune modulation, secretion of various growth factors, secretion of vascular endothelial growth factor (VEGF), formation of new blood vessels, regulation of cell death, reduction of inflammation, and activation of neighboring stem cells.

All these processes by repairing the damage improve the function and networking in the brain which may be seen as clinical improvements leading to decrease in dependency and improvement in overall quality of life.

The NeuroGen Outcome:-

At NeuroGen BSI, we have treated over 25 patients with mental retardation with tremendous improvements in all the impairments seen.

On follow up, majority of the patients improved in various domains of symptoms such as cognition, social interaction, communication, toilet training, self care, home living, etc. Their schooling improved, learning ability improved; hence, the mental development starts to become age appropriate. Overall mental development is improved which is recorded as improvement in IQ. This consequently, relieves the pressure of the care taker and the family.

Besides, improvement in symptomatic parameters, the neurological damage that is seen in mental retardation also shows repairs as reported by the radiological findings by PET-CT Scan.

Pre Stem cell therapy PET CT scans showing blue areas with decreased metabolism

Post Stem cell therapy PET CT scan showing decrease in blue areas which is replaced by green areas indicating improved functioning of the brain

Autologous stem cell therapy is a safe and feasible, alternate treatment option for MR. By improving cognition, learning, and other functions, stem cell therapy decreases the gap between these patients with low IQ and that of normal IQ. It kick-starts the halted mental development and advances towards normal development.

What is Mental Retardation exactly?

Mental Retardation is basically an impairment in general mental ability that impacts every day functioning in 3 major domains:

  • The conceptual domain – which includes skills in language, reading, writing, math, reasoning, knowledge, and memory.
  • The social domain - which refers to interpersonal communication skills, empathy, social judgment, the ability to make and retain friendships, and similar capacities.
  • The practical domain - which centers on self-management in areas such as personal care, job responsibilities, money management, recreation, and organizing school and work tasks."

How can the diagnosis be made?

A diagnosis is made based on the clinical evaluation and a standardized intellectual testing. An IQ score of 70 or below is still considered to make a diagnosis of Intellectual Disability.

When is the diagnosis made?

The diagnosis is made after infancy, when the child just begins school.

How early can parents seek early intervention when their baby is found to be developmentally delayed?

As soon as it is recognized that the young child is developmentally delayed in comparison to other normal children or siblings, prompt treatment and intervention will help the child to reach his/her optimal level of development. The first 24 months of a normal child’s life have tremendous and rapid growth and development.

What is the life span of a child with Mental retardation?

Mental retardation by itself does not reduce a normal life span. A lot depends on the cause, severity of mental retardation, associated medical problems and the level of care given.

Will I have another child like this?

Depending on the cause, there may be the possibility of another child being affected. Therefore, parents are advised to go for genetic counseling prior to planning for another child.

Are there possibilities of other disabilities along with Mental Retardation?

Yes. The most common co morbid disabilities include autism, cerebral palsy, hyperactivity and epilepsy.

Are there medications available to treat Mental Retardation?

There are several medications available for reducing symptoms that are seen in children with mental retardation but no specific medicines are yet available.

What is available in terms of treating or dealing with Mental Retardation/ Intellectual disability?

A child with Mental retardation or Intellectual Disability needs specialized training and one to one attention as well as specific therapists.

  • Special educators – who make programs specifically designed to address each individual child’s special needs by modifying teaching methods and the child’s environment.
  • Occupational therapists –who focus on teaching skills in order to make the child capable of carrying out his/her basic activities of daily living. The main goal here is to make the child independent and take care of him without any assistance.
  • Speech Therapist - It has been found that many children with Intellectual disability also experience difficulty articulating speech due to which it affects their communication skills and forming friendships. Speech therapists help and focus on language components which include manipulating sounds, using minimal units of meaning, sentence construction as well as social aspects of communication.
  • Psychologists – Psychologists play a crucial role in terms of assessment and classification of mental retardation. Assessment includes carrying out a formal standardized intellectual testing (IQ test) on the child and counseling the parents accordingly. It is important for the parents to know the capacity or potential of their child and encouraging him/her accordingly taking into consideration his strengths and weaknesses.

Are there different types or levels of Mental retardation?

Yes. There are different levels of Mental retardation which fall into mild, moderate, severe and profound.

  • Mild Mental retardation - Children with mild retardation can generally learn reading, writing, and math skills between the third- and sixth-grade levels. In adulthood, they may have jobs and live independently.
  • Moderate mental retardation - Children with moderate mental retardation may be able to learn some basic reading and writing but require supervision and monitoring in day to day living.
  • Severe mental retardation - Children with severe retardation probably will not be able to read or write, although they may learn self-help skills and routines.
  • Profound mental retardation - Children with profound retardation will need intensive support for the rest of their lives. They are completely dependent on the family for their activities of daily living.

Is it important to send the child to school?

Yes, of course. It is extremely important that the child be sent to school, either normal or special school depending on the severity of his intellectual disability. It is important that he be given exposure to a learning environment, peers of his age and capabilities from a young age itself. Special schools provide individualized education, addressing specific needs. Student to teacher ratios are kept low, depending upon the needs of the children. Special schools provide modifications in order to make learning more simpler.

How does stem cell therapy work?

The biological task of stem cells is to repair and regenerate damaged cells. Stem cell therapy exploits this function by administering these cells in high concentrations directly in and around the damaged tissue, where they advance its self healing and repair.

In children with mental retardation, generally, certain areas of the rbain are damaged or functioning less, which can be seen on the PET CT Scan brain. Stem cell s home on to these sites of damage and help improve functioning of these areas.

Are there ethical concerns surrounding adult stem cell research and therapy?

Bone marrow transplantation has been used successfully for genetic disorders of blood, such as sickle cell anemia, thalessemia, as well as cancers such as leukemia. Since our therapy uses these very cell, which are harvested from the patient’s own body (autologous cells), there are no major ethical concerns. Ethical concerns are primarily on the use of embryonic stem cells (which we do not use).

Does the treatment have any side effects?

Stem cell therapy is minimally invasive and reasonably safe. None of our patients have shown any neurological deterioration so far in connection with the stem cell therapy itself. Some side effects, such as headache (spinal headache) lasting 3-4 days which is generally self limiting, neck/back pain, vomiting, some mild rash or pain at the site of bone marrow aspiration/stem cell injection may occur. However, like any other medical or surgical treatment unexpected complications are always a possibility. These complications may be related to the medicines given, the stem cell procedure, the anesthesia, and the rehabilitation or to any of the preexisting medical or neurological conditions.

In case of children with seizures, or previous history of seizures or an abnormal EEG, a small possibility of triggering seizures can be there. However, proper antiepileptic cover/drugs, could circumvent this problem.

How long will it take me to know that I have benefitted from the treatment?

Maximal improvements are seen around 3-6 months after the treatment. However, in many patients there are slow progressive improvements that continue for several months/years later. Most patients do show some immediate improvements also i.e. before the discharge, in some of their symptoms.

Is the transplantation of the stem cells done once or more than once?

The decision to do the therapy a second time is taken after seeing the progress/improvements after the first therapy. If the patients show some encouraging improvement, then the case is reviewed by the entire medical and rehabilitation team. Certain special imaging tests, such as PET CT Scan of the brain, would be repeated and then a second treatment may be recommended. This may be done anytime between 3-6 months of the first therapy.

Can other treatments be taken at the same time?

We will review what other medications the patient is already on. In most cases we do not discontinue any already going on treatment. However this is decided on a case by case basis. Please inform us about any medications you are taking beforehand.

Will my child improve after stem cell therapy?

In NeuroGen Brain and Spine Institute, we have treated over 25 patients with mental retardation. They were administered with autologous stem cells, intrathecally. On follow up, majority of the patients improved in various domains of symptoms such as cognition, social interaction, communication, toilette training, self care, home living, etc. Their schooling improved, learning ability improved, hence, the mental development starts to become age appropriate. This consequently, relieves the pressure of the caretaker and the family. Overall mental development is improved which is recorded as improvement in IQ

Unbelievable improvements seen in a case of Mental Retardation with Cerebral Palsy

A 14 years old female known case of Cerebral Palsy with Mental Retardation since 3 years of age. She had complications since birth like fever since 3rd day associated with seizures for 24 hours. Also history of NICU stay for 24 days. She gets seizures every 6 months or due to any climatic change, for which she was on regular medications. She has not undergone any rehabilitation.

She was brought to NeuroGen Brain and Spine Institute on 22nd of April, 2013 with her main concerns being she doesn't follow commands, restlessness, hyperactivity, self stimulating behavior, cognition severely affected, attention deficit, bowel bladder dependent, dependent for ADL, temper tantrums, recognizes family members, aggressive behavior like hitting people if she is angry, pulling her hair and self pinching and difficulty cutting hair and cutting nails.

On examination she was hypertonic an hyperreflexic, poor postural reaction, bilateral hamstrings tightness, walks with assistance of parents in diplegic pattern, poor voluntary control of all four limbs.

She underwent Stem Cell Therapy in April. It looked really difficult for the parents to handle her.

Later in the month of August, 2013 they came for 1st follow up and the following changes were seen :

Her eye contact has improved to at least 1 second.

Improvement in Cognition:

  • She plays with Toys.
  • Her understanding has improved; she now understands if everybody gets ready and leaves from home.
  • Her attention ad concentration has improved.
  • Her problem solving has improved along with command following.

Improvement in Behaviour:

  • Her aggressiveness has reduced up to 15 %.
  • Earlier she use to not eat spicy food, but now she eats all kinds of food.
  • Earlier she use to not wear earrings, bangles but now she likes to wear it.
  • Laughing without any reason has reduced considerably.

Physical Improvements:

  • Her tightness has reduced.
  • Now she can climb and descend stairs with little support.
  • She walks at home with the help of walker.

Her special school teacher reported:

  • Her awareness has increased as previously she would sit alone whereas now if there isn't anyone in the class she comes out.
  • Her sleep has reduced i.e. previously she use to sleep in the class, but now she doesn't.
  • Her activity level has increased.