Sturge-Weber Syndrome Center: Visit Checklist
Most visitors to the center consult with Dr. Comi. During this visit, Dr. Comi provides anticipatory guidance for patients and families concerning on-going assessment and treatment of children with Sturge-Weber syndrome (SWS). Symptoms of seizures and other neurological episodes, multidisciplinary considerations for people with SWS, as well as resources available to families may be among the topics discussed.
In addition to Dr. Comi, the center's staff includes several other excellent SWS specialists. Please use the checklist below to help determine which of these physician's services may be most appropriate to address each individual child's needs. If you are interested in one or more items under any doctor’s name, you can contact us for information about scheduling a visit with that clinician.
Dr. Bernard Cohen
Dermatology
- Infant with birthmark not yet confirmed as port-wine birthmark by dermatologist
- Interest in laser treatment of PWS
- Port-wine birthmark that is thickening, developing nodules
Endocrinology
- Family history of endocrine disorders including thyroid problems and/or diabetes
- Shorter than expected height and/or changes in growth curves for height or weight
- Early, late, or abnormal pubertal development
Neurology (Epilepsy)
- Difficult-to-control seizures
- Side effects from seizure medications
- Interest in other methods of seizure control, including diet, VNS or neurosurgery
Ophthalmology
- Infants: six months since last ophthalmology visit
- Children and adults: one year since last ophthalmology visit
- Difficult to manage glaucoma
- Interest in second opinion, surgical referral
- Bulging eyes
- Worsening vision or visual field deterioration
Medical Rehabilitation
- Difficulty with gross motor skills such as walking, running, or playing sports
- Difficulty with fine motor skills such as writing, tying shoes, or self-feeding
- Difficulty eating or speaking
- Interest in therapy referrals (occupational, physical, and/or speech and language)
Behavioral Specialist
- Mood swings
- Trouble with socialization (peers, siblings)
- Depression
- Behavioral problems
- Regression (loss of skills)
Neuropsychology
- Neuropsychological evaluation to help clarify patterns of learning and behavior
- Identifying cognitive strengths and intact abilities that can be used for treatment planning
- Identifying cognitive weaknesses associated with visual problems, seizures, medication-side effects and brain abnormalities
- Monitoring the child's cognitive stability over time
- Assistance planning for child's transition from adolescence into adulthood
