It is common for medical providers to be unfamiliar with TSC, including neurologists, and pediatricians. It is crucial to have a local neurologist and pediatrician involved in your child’s healthcare team. Finding a good fit is essential as these care team members will be your child’s expert and, along with you, be your biggest advocate as you start your TSC journey. As a parent you want nothing less than the best and connecting with a local or out of state TSC clinic to help guide clinical treatment options is appropriate. If you do not have access to a local TSC clinic, you can also make an appointment with a pediatric neurologist experienced in epilepsy. Many of our TSC experts can offer provider-to-provider recommendations and our Support Navigators can assist with this process.
Insurance coverage can also be a factor in ensuring your child does not have delayed intervention and care. It is important to consider if out of state healthcare is right for your family. For those who are considering traveling across state lines, please go to the medical access issues page in the Pharmacy resources section to learn more on how to proactively prevent issues from occurring. You can locate a TSC clinic here.