What is the diagnosis and treatment for Trichohepatoenteric syndrome (THE), a rare congenital disorder?

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From the Research

Tricho-hepato-enteric syndrome (THE syndrome) is a rare genetic disorder characterized by intractable diarrhea, hair abnormalities, liver disease, and developmental delays, and its management focuses on symptom control and supportive care, as reported in a recent case study 1.

Diagnosis and Treatment

The diagnosis of THE syndrome is based on genetic testing, which confirms the presence of mutations in genes involved in RNA processing, such as TTC37 or SKIV2L 2, 3. The treatment of THE syndrome requires a multidisciplinary team approach, including:

  • Nutritional support: Total parenteral nutrition (TPN) is often necessary, especially in infancy, and enteral feeding should be introduced gradually as tolerated 4.
  • Diarrhea management: Anti-diarrheal medications like loperamide should be used cautiously, and electrolytes and fluid balance should be monitored closely 1.
  • Liver care: Regular liver function tests and ultrasounds should be performed, and ursodeoxycholic acid may be prescribed for cholestasis 3.
  • Hair and skin care: Gentle hair care practices and moisturizing skin treatments should be used to manage hair abnormalities and skin hyperpigmentation 5.
  • Developmental support: Early intervention with physical, occupational, and speech therapies is essential to support developmental delays 4.
  • Immunological monitoring: Regular check-ups are necessary to monitor increased susceptibility to infections 2.
  • Genetic counseling: Genetic counseling is crucial for family planning purposes, as THE syndrome is a genetic disorder 5.

Management Strategies

The management of THE syndrome requires a comprehensive approach, including:

  • Multidisciplinary team care: A team of gastroenterologists, hepatologists, nutritionists, and developmental specialists should be involved in the management of THE syndrome 4.
  • Regular follow-ups: Regular follow-ups are crucial to adjust treatment as the child grows and symptoms evolve 1.
  • Supportive care: Supportive care measures, such as total parenteral nutrition and continuous supportive care, may be necessary to manage symptoms and prevent complications 1.

References

Research

Tricho-Hepato-Eenteric Syndrome: Same Genotype but Different Phenotypes in Two Pakistani Children.

Journal of the College of Physicians and Surgeons--Pakistan : JCPSP, 2022

Research

Expanding the clinical spectrum in trichohepatoenteric syndrome.

American journal of medical genetics. Part A, 2021

Research

Tricho-hepato-enteric syndrome: Retrospective multicenter experience in Saudi Arabia.

Saudi journal of gastroenterology : official journal of the Saudi Gastroenterology Association, 2022

Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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