It is important to work with a Neurologist who has experience with severe childhood epilepsy syndromes, preferably with Doose itself. Typically, you want to see a child epileptologist. In the world of neurology, some physicians treat only adults, only children, and some who do both. Beyond this, some have additional qualifications and certifications to become epileptologists, meaning they specialize in epilepsy which is just one of many neurological issues people may have. Usually, these can be found most easily at Comprehensive Epilepsy Centers (CEC). We recommend that all children be seen by doctors at a CEC at least initially. In addition to the expertise they have in treating rare and hard to treat disorders, they are usually also able to refer you to resources at the hospital for behavioral medicine, neuropsychology, and other experts you will need on the journey. Finally, many of these centers also have Ketogenic Diet programs which may be recommended as a treatment for your child. If you are working with a general neurologist, it would be beneficial to have them refer you to an epileptologist at a CEC.
Find a Doctor
https://my.aesnet.org/FindaDoctor
Comprehensive Epilepsy Centers
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
Ketogenic Diet Centers
https://charliefoundation.org/find-a-hospital/