Children with Timothy Syndrome need to be managed by a multidisciplinary team that includes a variety of medical, educational and social support.

TS is known to affect the function of most tissues of the body. The degree of affectedness in each tissue will determine the extent of health considerations each child will require.

Treatment for heart issues

Some children require treatment for cardiac concerns. This can include: 

  • medications known for their effectiveness in treating Long QT
  • pacemakers
  • internal defibrillators (ICD)

Blood sugar

Serious fluctuations in blood sugars are often noted during surgeries in TS children. Monitoring for arrhythmias and blood sugar levels is strongly recommended for all surgical procedures including the recovery period. 

This can be problematic for children undergoing syndactyly surgery, for whom cardiac issues are not yet known.

Unusual blood sugar level fluctuations are problematic, particularly associated with infections and fasting.

Speech therapy

Many children with Timothy Syndrome have the characteristic features of autism or similar conditions known as autistic spectrum disorders. Early intervention with physical and speech therapies, and social integration have proved beneficial.

Significant speech delays are common. Receptive speech is generally more advanced compared to expressive speech. Despite speech delays, auditory testing has shown TS children have normal/near normal hearing.

Social and physical therapy

Early intervention with physical and social integration have proved beneficial.

Normal physical milestones such as walking, running and jumping are generally delayed. 

Social development is generally impaired, shyness often predominates with a common preference for solitude; however, in some cases the TS child can seem overly friendly. 

Treatment for stomach issues

Gastrointestinal issues are frequent, with constipation being one of the greatest concerns. 

Increased magnesium intake is often helpful for bowel movements (and also helpful for migraine headaches).

This website contains general information about CACNA1C-related disorders. The information is not advice, and should not be treated as such. You must not rely on the information on this website as an alternative to medical advice from your relevant medical professional. TSA does not promote or recommend any treatment, therapy, institution or health care plan.

The information contained in this site is intended for your general education and information only. Any treatment plan for any given patient must be carried out on an individual basis, after a thorough discussion with the patient’s medical professional(s).

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