Childhood disintegrative disorder (CDD), or Heller’s syndrome, is a rare condition characterized by late onset, usually at three years of age onward. It typically features developmental delays in language, social function, and motor skills. Researchers have not been successful in finding a cause for the disorder.
CDD is among the 5 major types of autistic disorders and is sometimes referred to as Dementia Infantilis or Disintegrative Psychosis. Childhood Disintegrative Disorder is rare. It occurs approximately in 1 out of 1,00,000 children, however it is 4 times more prevalent in boys than in girls. Presently, it is believed that CDD may have been over-diagnosed in girls who actually had Rett’s Syndrome as opposed to CDD.
CDD is a form of autism that many believe may actually start while a child is in the womb. Regression can be very sudden and can happen anywhere from 2-10 years of age. Some children begin regressing before the symptoms become obvious to the parents while others showcase the symptoms in a way that educators and parents recognize the problem right away. Children can lose their fine and gross motor skills, control of bladder and bowel, social skills and self-care skills.
A disorder like Heller’s Syndrome can be very devastating for parents as the symptoms are very sudden and unexpected. Children often do not understand what is happening to them and are very alarmed at their condition . Children with Heller’s Syndrome must undergo therapy and may require expensive prescription drugs. Many parents must make financial sacrifices in order to care for their child and to ensure he or she receives the care needed.
Causes
There’s no known cause of childhood disintegrative disorder. There’s likely a genetic basis for autism spectrum disorders. The theory is that an abnormal gene is switched on in the early stages of development, before birth, and that this gene affects other genes that coordinate a child’s brain development. Environmental exposures, such as to a toxin or infection, may contribute to these effects.
Infections – It’s also possible that an autoimmune response may play a role in the development of childhood disintegrative disorder. In an autoimmune response, your body’s immune system perceives normal body components as foreign and attacks them.
Childhood disintegrative disorder often occurs along with other conditions, including:
- Tuberous sclerosis – In this condition, noncancerous (benign) tumors grow in the brain.
- Lipid storage diseases – In this rare group of inherited metabolic disorders, a toxic buildup of excess fats (lipids) occurs in the brain and nervous system.
- Subacute sclerosing panencephalitis – This chronic infection of the brain is caused by a form of the measles virus that results in brain inflammation and the death of nerve cells.
Environmental Factors- Environmental factors have been implicated, although there is little conclusive evidence –
- Toxins like lead, antimony and mercury have been found in high levels in the hair and blood samples of affected children. It may be that ASD children are unable to detoxify as efficiently as other children.
- This hypothesis is similar to the premise behind the gluten- and casein-free diet. Peptides produced by gluten and casein act as morphine-like substances to ASD children and exaggerate their behaviours. Currently, however, there is insufficient evidence for improved behaviour with the exclusion diet.
Dietary intervention – There are indications that certain vitamins and mineral supplements may improve functioning in autistic people. While there is some disagreement regarding this amongst medical professionals, many parents have reported marked improvements after a program of nutritional supplements. There are also a number of clinical studies which strongly support the use of vitamin and mineral supplementation in the treatment of autism and have demonstrated significant improvement.
As nutrition is such a vital ingredient in brain development, it stands to reason that supplementation may have a positive benefit, although this would vary from individual to individual. Some experts have gone as far as to suggest that certain cases of autism could be as a result of nutritional deficiencies or mal absorption of nutrients from the diet. The subject is a very complex one and outside the scope of this discussion.
It’s unknown whether these conditions play a part in triggering childhood disintegrative disorder or share genetic or environmental risk factors.
Symptoms
Although included under the umbrella of autism spectrum disorders, childhood disintegrative disorder symptoms can appear and develop later than other autistic disorders. Children with disintegrative disorder may develop normally till about 2 years old and then show a sudden and/or extreme loss of previously acquired skills in at least 2 of the following areas (please refer to our article on does my child have autism.
- Social Skills – Regression in the ability to relate and interact with others.
- Play Skills – Loss of interest in games and imagination
- Language – Severe decline in the ability to hold a conversation and sometimes even speak
- Motor Skills – Severe and dramatic decline/regression in fine motor skills and walking. May also exhibit Tourette’s Syndrome Symptoms
- Bowel & Bladder Control – Regression in potty training, frequent bowel and bladder incidents.
The loss of these skills may occasionally appear over time, however they tend to occur rapidly over a six to nine months time span. With the loss of gained skills, CDD then begins to resemble many of the different forms of autism. The key difference however is that skills lost will perhaps can be regained (even with intensive therapy).
Signs for Parents
Lack or loss of normal function – This lack or loss occurs in at least two of the following areas –
Social interaction – This may include a wide range of problems with social connectedness. Your child may have difficulty with nonverbal interactions, may not make friends with peers, and may lack the ability to share, recognize, understand and respond to others’ social cues and feelings.
Communication – This may include a delay or loss in the ability to speak or to start and maintain conversations. Your child also may use the same words over and over, and may not “get” imaginative or make-believe play.
Repetitive and stereotyped patterns of behavior, interests and activities – Your child may flap his or her hands, rock or spin (motor stereotypes and mannerisms); may become attached to specific routines and rituals; or may have difficulty with transitions or changes in routine. Many children with the disorder develop a fixed posture or body position (catatonia) and may become preoccupied with certain objects or activities.
Complications
Over 90% of children with CDD lose their self-help skills such as –
- Feeding themselves
- Washing
- Learning new words, un-learning previously used words
- Brushing teeth
- Toilet usage
- Alternate forms of communication such as sign language, expression, etc
Treatment
Medications – There are no medications that directly treat childhood disintegrative disorder. However, severe behavior problems, such as aggression and repetitive movements, may sometimes be controlled by medications for anxiety or depression, or antipsychotic medications. Anticonvulsant drugs may help control epileptic seizures.
Behavior therapy – This therapy technique may be used by psychologists, speech therapists, physical therapists and occupational therapists as well as parents, teachers and caregivers. Behavior therapy programs may be designed to help your child learn or relearn language, social and self-care skills. These programs use a system of rewards to reinforce desirable behaviors and discourage problem behavior. A consistent approach among all health care team members, caregivers and teachers is important in behavior therapy.
Developmental, Individual Difference, Relationship based (DIR) – This type of therapy is carried out in natural settings such as home and pre-school. It aims at improvements in communication skills, thinking and social skills.
Interpersonal Synchrony – It focuses on social development and imitation skills and teaches children how to establish and maintain engagement with others.
For Parents
Learn about the disorder – There’s limited information about the cause of childhood disintegrative disorder. However, learning about treatment options will give you the knowledge to be an advocate for your child.
Find a team of trusted professionals – You’ll find it helpful to have a knowledgeable team of doctors, therapists and teachers to guide you as you make decisions related to your child’s care. They can help you keep abreast of new medications and therapies so that you can give your child the best available treatments.
Seek support from other families – Other families who have children with autism spectrum disorders may be a source of emotional support and provide encouragement and helpful suggestions. Support groups are available in many communities for parents and families with children who have autism spectrum disorders.
Take time for yourself and other family members – Caring for a child with child disintegrative disorder can be a full-time job that places stress on your marriage and family life. It’s important to take care of yourself and spend time with your spouse or significant other, as well as other family members. Schedule time to participate in family activities, enjoy a favorite hobby, exercise or just relax. It may also be beneficial to seek respite care on a regular basis in order to prevent caregiver burnout.
Complementary & Alternative Treatment
Alternative and Complementary therapies for disorders on the autism spectrum may include special diets, vitamin and mineral supplements, art therapy, music therapy, and sensory integration, a therapy technique used by occupational therapists to help children adapt to normal sensory experiences in the environment.
Creative Therapies – Some parents of CDD children choose to go for art therapy which includes art or music therapy, which aims at reducing child’s sensitivity towards touch or sound.
Yoga Therapies – Yoga is a mind-body approach which helps to control anxiety in CDD patients.
Chelation Therapy– This type of treatment is used to remove mercury and other heavy metals from the body.
Acupuncture– This therapy is used as a tool to improve CDD symptoms.
Nutritional Treatment
Melatonin – Melatonin is a naturally occurring hormone that regulates the sleep-wake cycle in CDD children, as they suffer from sleeping problems.
Omega-3 Fatty Acids – Fatty acids are very important in the development and function of the brain. Several studies have proven that omega3 fatty acids reduce the symptoms of CDD.
Nutritional Supplements- Studies show that children with CDD tend to be deficient in various nutrients. Multi vitamin supplements are highly suggested.
Gluten-free, Casein-free and Soy-free diet
Probiotic Intake – It helps in improving the gastrointestinal issues that CDD children suffer from.
How we Diagnose CDD
At our center, we perform a comprehensive diagnostic workup, which helps us to study the entire history of the child. This includes the following:
- Allergy Testing- to determine food triggers and inhalant allergy.
- Structured food elimination diet- to yield vital information about gastrointestinal functioned food tolerance
- Urine Tests- to determine abnormal peptides from wheat or dairy products to see if gluten-free or casein-free diet should be implemented for the child.
- Hair Analysis- to examine toxic metal and essential minerals for its toxicity or deficiency and suggests us the safest forms of detoxification or supplementation.
- Hidden sources of toxic pollutants are examined
- Neuropeptide Levels, the biomarkers of brain chemistry and function are tested to uncover certain imbalances that can be treated with individualized amino acid programs.
- Organic Acid Analysis –to determine the metabolites of yeast and some bacteria species.
With the above way of treatment, we have successfully unlocked the mysteries behind altered brain function and resulted in providing comprehensive treatment that helps us to reach out to these children and help them to reach out to the world…
Reference –
http://effexorautismattorney.com/effexor-heller%E2%80%99s-syndrome-attorney
http://www.oxfordreference.com/view/10.1093/oi/authority.20110803095929448
http://childstudycenter.yale.edu/autism/information/cdd.aspx
https://www.dealwithautism.com/childhood-disintegrative-disorder/
http://www.autism-help.org/childhood-disintegrative-disorder.htm
https://www.specialeducationalneeds.co.uk/hellers-syndrome.html
http://emedicine.medscape.com/article/916515-overview
http://www.minddisorders.com/Br-Del/Childhood-disintegrative-disorder.html
http://www.rightdiagnosis.com/medical/heller_s_syndrome.htm
http://patient.info/doctor/childhood-disintegrative-disorder-hellers-syndrome
http://www.ptonthenet.com/articles/Costochondritis-Tietzes-Syndrome-1173