Tuberous sclerosis complex (TSC): treatment

Written and reviewed by Dr Ibrahim Imam, Consultant Neurologist. Last reviewed .

Tuberous sclerosis complex (TSC): treatment. Multidisciplinary care, Counsel against smoking: tobacco and vaping. Fully referenced neurology checklist.

General care

  • Multidisciplinary care
  • Counsel against smoking: tobacco and vaping
  • Counsel against oestrogen use
  • Genetic counselling
  • Advice on sun protection
  • Advice on symptoms of pneumothorax
  • Encourage age-appropriate and influenza vaccinations
  • Advice on recombinant varicella zoster vaccine for those on mTOR inhibitors
  • Advice on avoiding live vaccines for those on mTOR inhibitors

Treatment of seizures

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Treatment of TSC lesions

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Indications for treating LAM with Sirolimus

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Acronym

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References

  1. Northrup H, Aronow ME, Bebin EM, et al. Updated International Tuberous Sclerosis Complex diagnostic criteria and surveillance and management recommendations. Pediatr Neurol 2021; 123:50-66.
  2. Northrup H, Krueger DA; International Tuberous Sclerosis Complex Consensus Group. Tuberous Sclerosis Complex Diagnostic Criteria Update: Recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference. Pediatr Neurol 2013; 49:243-254. 
  3. Franz DN, Lawson JA, Yapici Z, et al. Everolimus dosing recommendations for tuberous sclerosis complex-associated refractory seizures. Epilepsia 2018; 59:1188-1197.
  4. Mizuguchi M, Ikeda H, Kagitani-Shimono K, et al. Everolimus for epilepsy and autism spectrum disorder in tuberous sclerosis complex: EXIST-3 substudy in Japan. Brain Dev 2018; pii: S0387-7604(18)30176-1 (Epub ahead of print).
  5. French JA, Lawson JA, Yapici Z, et al. Adjunctive everolimus therapy for treatment-resistant focal-onset seizures associated with tuberous sclerosis (EXIST-3): a phase 3, randomised, double-blind, placebo-controlled study. Lancet 2016; 388:2153-2163.
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