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Effective Treatments, Help, and Advice for Childhood Disintegrative Disorder

written by: KLeeBanks • edited by: Linda Richter • updated: 5/19/2011

Childhood disintegrative disorder (CDD) falls under the category of pervasive development disorders (PDD). CDD is particularly insidious and persistent as it attacks a normally developing child after the age of 2, causing a debilitating regression and loss of previously acquired, functional skills.

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    Introduction

    Children diagnosed with childhood disintegrative disorder (CDD), along with their families, sadly and unfortunately face a bleak future. This rare but aggressive disorder strikes a normally developing child usually between the ages of 2 to 4, although children as old as 10 have received CDD diagnoses. The prominent feature of CDD is its ability to cause a child’s acquired or learned skills to disintegrate. For instance, a child who had previously mastered self-care skills and language capacities would begin to lose those abilities. The child’s development typically regresses to the point that he or she requires long-term care, including residential care with professional staff.

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    CDD Defined

    Childhood disintegrative disorder (CDD) is a debilitating and aggressive disorder that causes children to regress in developmental stages they had previously acquired. This includes personal self-care skills, as well as language and social skills. MayoClinic.com [1] defines the following characteristics as indicative of CDD:

    Loss of formerly acquired skills:

    • Self-care skills, including bladder and bowel control.
    • Language skills, including expressive and receptive.
    • Fine and gross motor skills.
    • Social and play skills.

    Impairment or loss of previously functional skills:

    • Language and communication: delay or loss of speech; odd speech habits, such as echolalia (i.e., repetition of words or syllables); breakdown in ability to communicate with peers or participate in creative play.
    • Social skills: loss of ability in recognition of emotions, gestures, and other nonverbal cues; loss of ability or interest in forming friendships.
    • Recurring “unusual" behaviors: easily fixated on particular objects, activities, or people; resistance to changes in routine or schedule; engrossed in repetitive motions, such as rocking or hand-flapping.

    [2][3] (Modified list from previous articles).

    Consult with your child's pediatrician if you notice your child has suffered significant loss of previously acquired skills.

    Watch for signs of lost skills in your child. 

    [Image Permission: Tina Phillips / FreeDigitalPhotos.net].

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    CDD Treatments

    Rather than curing the disorder, childhood disintegrative disorder treatment is primarily a means to provide behavior modification and relief from symptoms. Treating CDD may eventually require admitting a child to a long-term residential care facility with professional staff, if the child’s condition disintegrates to the point of severe and permanent disabilities. CDD treatments, according to MayoClinic.com [4], may include some or all of the following:

    • Behavior therapy: designed to help the child learn or regain lost skills, including self-care skills, communication, and social skills; therapy consists of reinforcement techniques that support desired behaviors, and discourage undesirable behaviors.
    • Medications: not intended to eliminate behaviors, but alleviate and/or control them by addressing symptoms such as anxiety, depression, psychosis, and seizures.
    • Alternative therapies: only complement, not replace, behavior therapy and medications; these may include specially designed diets and supplements, sensory integration, and art or music therapy [5].

    [3](Modified list from previous article).

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    Help and Support

    Similar to those who have family members with terminal illnesses, families who have a child with CDD need strong, compassionate assistance and support. MayoClinic.com [6] and Autism-Help.org [7] provide these suggestions for coping strategies:

    • Learn all you can about the disorder: talk to your child’s pediatrician and specialists; read medical journals; talk to other families who have a child with CDD.
    • Locate a team of trusted professionals: medical professionals, as well as therapists and instructors, can keep you informed about proper care and treatments for your child.
    • Seek out support groups: other families who have children with autism spectrum disorders, PDD, or similar disorders can provide suggestions, encouragement, and emotional support; join these groups in person or find online forums.
    • Take time off: caregivers and other family members of children with CDD are under significant stress and emotional strain; take time off to care for yourself and your other family members by engaging in enjoyable activities with the help of other responsible caregivers who watch your child with CDD.
    • Seek counseling: parents often experience numerous negative feelings ranging from guilt and anger, to depression and a sense of loss, over their child’s condition; seek counseling and support to deal with these feelings constructively.
    • Obtain respite care: qualified, responsible respite professionals either in the home or at a facility can provide parents and other family members with a break and peace of mind.
    • Seek advocacy: whether you self-advocate or seek another advocate, it’s important to stay informed about your child’s condition and remain consistent in requiring the best treatments and options for your child’s care.
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    Conclusion

    Parents desperately seek childhood disintegrative disorder treatment for their children who have that diagnosis. These children suffer the incapacitating loss of previously acquired functional skills. Since CDD is a rare disorder with no known cause or cure, CDD treatment can only help alleviate symptoms and modify certain behaviors. Children who develop severe, permanent disabilities may eventually require long-term, institutional care.

    References/Resources

    [1] MayoClinic.com. Childhood disintegrative disorder – Symptoms. Retrieved from http://www.mayoclinic.com/health/childhood-disintegrative-disorder/DS00801/DSECTION=symptoms

    [2] Bright Hub. What are the Differences Between Childhood Disintegrative Disorder and Autism? by K’Lee Banks. Retrieved from http://www.healthguideinfo.com/diagnosing-autism/p85152/

    [3] Bright Hub. What is Childhood Disintegrative Disorder? by K’Lee Banks. Retrieved from http://www.healthguideinfo.com/diagnosing-autism/p84991/

    [4] MayoClinic.com. Childhood disintegrative disorder – Treatments and drugs. Retrieved from http://www.mayoclinic.com/health/childhood-disintegrative-disorder/DS00801/DSECTION=treatments-and-drugs

    [5] MayoClinic.com. Childhood disintegrative disorderAlternative medicine. Retrieved from http://www.mayoclinic.com/health/childhood-disintegrative-disorder/DS00801/DSECTION=alternative-medicine

    [6] MayoClinic.com. Childhood disintegrative disorder-Coping and Support. Retrieved from http://www.mayoclinic.com/health/childhood-disintegrative-disorder/DS00801/DSECTION=coping-and-support

    [7] Autism-Help.org. Support for Parents Dealing with ASD. Retrieved from http://www.autism-help.org/family-carer-issues-aspergers-autism.htm