Symptoms of DTDS
While every family’s story is unique and each journey comes with its own twists and turns, this site is a synopsis of information about DTDS from a clinical overview. Your story matters. Beyond the doctors’ definitions and diagnosis, getting to know how other families are living with DTDS is valuable. If you’d like to share your story, feel free to use the Contact Us page to reach out.
As the condition progresses, some individuals may develop parkinsonism, which includes symptoms like shaking (tremors), slower movements (called bradykinesia), muscle stiffness (rigidity), and challenges with balance and coordination.
Dystonia is a condition where muscles tighten too much, leading to fixed, unusual postures. It can cause slow, twisting movements that make parts of the body, like the arms, legs, or trunk, turn or bend in unusual ways. These muscle contractions are involuntary, can last a long time, and may involve many different muscles. Dystonia can make everyday activities like talking, eating, picking things up, and walking more difficult.
Bradykinesia means that movements happen more slowly than usual, while hypokinesia refers to a delay in starting those movements.
An oculogyric crisis is an eye movement issue where the eyes may suddenly and involuntarily roll upward or stay fixed in one position. It might also involve eye twitching or blinking. This can be triggered by certain medications.
Hypotonia means that muscles are unusually floppy or have low tone. In DTDS (a specific condition), this often affects the muscles of the trunk and core.
On the other hand, hypertonia is when there’s too much muscle tone, often making the arms or legs stiff and hard to move. This stiffness is sometimes called spasticity or rigidity.
Chorea (from the Greek word for "dance") describes a pattern of involuntary, jerky movements that can seem restless and unpredictable. These movements can affect many areas of the body, including the trunk, face, tongue, and limbs. While each movement is separate, they can appear to flow together in a random way.
Global Developmental Delay is a term used for children under five who are developing more slowly than expected in areas such as movement, speech, learning, and social interaction.
Other symptoms that may be present include little or no speech, reduced facial expressions, irritability, sleep difficulties, digestive problems (like reflux or constipation), and repeated lung infections such as pneumonia, which can be very serious.
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