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debint (@debint)

Looking for the best neurologist

Epilepsy & Seizures | Last Active: Mar 19 7:11am | Replies (9)

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They never pick up anything except some unusual discharges in her sleep. She was 37 before they diagnosed and that was only after I pressured him for a diagnosis. she is higher functioning than most LGS patients and has never seen an epileptologist only a neurologist who I am not very happy with at the moment. I have to actually tell him what I want. For instance…she is on Epidiolex which when mixed with the benzo Onfi, can have adverse effects. I have done research and my daughter has several of the adverse side effects. He seems clueless when i tell him this and now that I demanded the wean, I really do not trust his judgement.

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Replies to "They never pick up anything except some unusual discharges in her sleep. She was 37 before..."

If I were in your situation I would move on to another provider. However if your not ready to do that at least ask for a second opinion or just go get one on your own. Your daughter may well need a higher level of care than what a general neurologist is capable of providing. I would ask the neurologist or the primary care physician for a referral to an Epilipsy Center. Preferably at the Mayo Clinic. There you are not only getting the benefit of an epilepsy specialist, the Epileptologist but an entire team of experts in Epilepsy. These are the Centers have advanced scanning and other technologies that may not have been available or that the previous doctor may not have known of or not offered.
Take care & good luck,