Tuberous Sclerosis Complex and CDD
In 2013, the American Psychiatric Association coined a new term that changed the way people thought and approached certain neurodevelopmental disorders. That term autism spectrum disorder (ASD), today covers a variety of different disorders under one umbrella, as each has a lot of similarities in terms of causes, signs and symptoms.
Two of the more well-known disorders under the ASD umbrella are autism and Asperger’s syndrome. But, childhood disintegrative disorder is another that doesn’t get as much attention.
Known more commonly as CDD, the disorder used to be listed under pervasive developmental disorders in the medical field. It’s associated with children losing abilities that they had already mastered.
Like the other forms of ASD, there’s no single cause of CDD, though it’s believed that there is a link between tuberous sclerosis complex and the development of CDD.
Below, we’ll discuss the two disorders in more depth and examine the link between the two.
Read more: Childhood Disintegrative Disorder
Table Of Contents
What is CDD?
CDD, also referred to as Heller’s syndrome, is a very rare disorder, affecting only about one to two out of 100,000 children. It’s characterized by children typically developing for the first two years of their life in many of the developmental milestone areas — including social relationships, adaptive behavior, verbal and nonverbal communication, and play.
Between 3 and 4 years old, the child will then start to lose the ability to perform some of the skills that they had already acquired. Sometimes, this happens gradually, or it can also happen rapidly.
CDD is officially defined as a child losing skills this way in at least two different areas — bladder or bowel control, adaptive behavior, social skills, play, expressive or receptive language, and motor skills.
Children who are diagnosed with CDD face a lot of the same challenges that children who have autism do. This includes challenges with social interactions, communication and repetitive behaviors.
What is Tuberous Sclerosis Complex?
Tuberous sclerosis complex, also known as TSC, is very rare as well. However, it is a disease and not a disorder, and it’s genetic in nature.
The disease causes benign tumors — meaning non-cancerous ones — to grow in several parts of the body, including the brain, skin, kidneys, lungs, eyes, heart and spinal cord. TSC gets its name from the nodules that look like tubers or potatoes in the brain, which then calcium affects as people get older, becoming sclerotic, or hard.
TSC is a condition that affects someone for their entire life, as there isn’t a cure for it. Some people who have the disease show signs of having it very early in their life, while the symptoms and signs may take much longer to develop for other people.
People who have TSC are at higher risk of serious conditions such as lung lesions, kidney lesions and brain tumors.
What is the Link Between Tuberous Sclerosis Complex and CDD?
There’s no single cause of CDD that’s been identified as of yet, just like there hasn’t been for other disorders under the ASD umbrella. At the same time, there have been links between CDD and other diseases identified, and this is especially true if the CDD symptoms begin later in childhood.
One of the identified causes is having tuberous sclerosis complex. The tumors that can grow on the brain can cause varying developmental delays and affects that are similar to that of CDD.
Children who have tuberous sclerosis complex can experience regressions in their development, a hallmark of CDD, as well as other challenges that are common in ASD — communication and social interaction challenges, and other developmental delays.
Diagnosing TSC is a little different from CDD, as there are medical tests and imaging such as MRIs, CT scans and ultrasounds that can help to diagnose it. Such testing does not work for ASD, which is only diagnosed through the presence of symptoms.
How Are They Treated?
As there isn’t a cure for CDD or tuberous sclerosis complex, the treatment plans consist of addressing the symptoms. The treatment is meant to be supportive and should be personalized to each individual, since every person is affecting by these diseases and disorders in different ways.
This is a main reason why applied behavioral analysis, or ABA therapy, is a leading treatment for both TSC and CDD. The evidence- and science-based approach to behavior and learning is widely accepted as the leading treatment for children who have ASD, including CDD that could be caused by tuberous sclerosis complex.
ABA therapists work one-on-one with patients, helping them to build the social, communication and daily life skills with which they might struggle. They do so by using positive reinforcement and repetition, helping patients modify their behaviors over time.
Blue Gems ABA Personalizes Care
Direct links between tuberous sclerosis complex and CDD have been made, though not every child who has CDD will also have TSC — and vice versa. At the same time, ABA therapy is recognized as the leading treatment plan for both.
At Blue Gems ABA, our team of experienced BCBAs create personalized treatment plans for each individual that are based on the unique strengths and challenges of each person.
To learn more, please contact us today.
617-297-7998
617-340-3371
info@bluegemsaba.com
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