Protocol · Genetic/Neurological Disorders
Tuberous Sclerosis Complex Supportive Care Protocol
Cannabidiol (CBD) is the core of this stack, with 4 supporting supplements. Each row gives the amount the protocol lists and the grade our evidence database holds for that supplement in Tuberous Sclerosis Complex Supportive Care.
We are re-verifying the studies cited on protocol pages; only confirmed citations are shown.
The stack
5 supplements · none graded yet
| Grade | Supplement | Amount listed | Why it’s in the stack | Evidence on file |
|---|---|---|---|---|
| Primary stackThe core of this protocol | ||||
| Cannabidiol (CBD) | Amount listed: Prescription required; typically 5–20 mg/kg/day | FDA-approved (Epidiolex) for seizures in TSC; anticonvulsant mechanism
| Not graded yet | |
| Supporting stackListed as additions to the core | ||||
| Vitamin D | Amount listed: 1,000–2,000 IU daily | Supports bone health; anticonvulsant medications deplete vitamin D | Not graded yet | |
| Omega-3 Fatty Acids | Amount listed: 1–2 g EPA+DHA daily | Neuroprotective; supports brain health; may have mild anticonvulsant effects | Not graded yet | |
| Folate | Amount listed: 400–800 mcg daily | Anticonvulsants may deplete folate; supports neurological health | Not graded yet | |
| Calcium | Amount listed: 500–1,000 mg daily | Supports bone health; anticonvulsants increase fracture risk | Not graded yet | |
How this protocol works
In plain language
Tuberous Sclerosis Complex (TSC) is a rare genetic disorder that causes non-cancerous tumors to grow in many parts of the body, including the brain, kidneys, heart, lungs, eyes, and skin.
GENETIC CAUSE:
- Mutations in TSC1 or TSC2 genes
- These genes normally suppress cell growth
- Can be inherited or occur spontaneously
COMMON FEATURES:
- Brain: Seizures (in ~85%), cortical tubers, cognitive issues, autism
- Skin: Facial angiofibromas, hypopigmented patches, shagreen patches
- Kidneys: Angiomyolipomas (benign tumors)
- Heart: Rhabdomyomas (often detected prenatally)
- Lungs: LAM (lymphangioleiomyomatosis) - mainly in women
- Eyes: Retinal hamartomas
CRITICAL: TSC requires lifelong multidisciplinary medical management. This protocol is SUPPORTIVE ONLY.
MEDICAL TREATMENTS:
- Seizures: Anticonvulsants (vigabatrin often first-line); CBD (Epidiolex) FDA-approved
- mTOR inhibitors: Everolimus for brain tumors, kidney tumors, LAM
- Surgery: For refractory seizures or problematic tumors
- Regular surveillance: MRI, renal imaging, echocardiogram
MONITORING SCHEDULE:
- Brain MRI every 1-3 years
- Renal imaging annually
- Dermatology as needed
- Developmental/behavioral assessments
- Ophthalmology annually
CBD (Epidiolex)* is FDA-approved for TSC-related seizures.
Nutritional support* is important due to anticonvulsant medications.
Bone health* needs attention due to seizure medications.
Expected timeline: TSC is lifelong. Treatment aims to control seizures, manage tumor growth, and optimize quality of life.