Looking for the best neurologist

Hi @debint, welcome to Mayo Clinic Connect. I read in the Lennox-Gastaut syndrome (LGS) https://connect.mayoclinic.org/discussion/lgs-diagnosis/?pg=2#comment-414831 that your adult daughter may have LGS, but it's not confirmed.

Yes, members can give provider and center recommendations. You are right to look for the best professionals. Members of the epilepsy group often counsel people to look for specialty epilepsy centers. As a level 4 comprehensive epilepsy center, Mayo Clinic is definitely a center you should consider. Mayo Clinic has expertise in the management and treatment of epilepsy, including complex epilepsy syndromes such as Dravet and Lennox-Gastaut syndromes. Treatment options at Mayo Clinic to eliminate seizures or reduce the frequency and intensity of seizures in children and adults include medications, vagus nerve stimulation, surgery, awake brain surgery, ketogenic diet and more. At Mayo, the providers work together as a team and you benefit from their collective expertise. Read more about Epilepsy Care at Mayo and further information here: https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102

To request an appointment you can self-refer or have your daughter's provider make a referral. Here is the contact information: http://mayocl.in/1mtmR63

@debint
That’s a difficult question to answer however I totally agree with Colleen Young. I wouldn’t hesitate to go to see an Epileptologist at Mayo Clinic’s Level 4 Epilepsy Center. However LGS is often difficult to diagnose.
If you were looking for a closer center I thought this locator may be beneficial.

Has your child ever been in an Epilepsy Center before or had a video vEEG? If so did your child have any type of seizure during the recording? Has s/he ever had Non-convulsive status epilepticus? Would you mind sharing what type/s seizures your child has and the frequency? Did s/he have LGS as a child? I had a bunch more questions but I’m sure to your delight I forgot them, 😃
LGS as you probably know is difficult at best to control. although your child may be one of the fortunate one's,I certainly hope so.
Blessings to all.
Take care,
Jake

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.

@debint
Hello,
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,
Jake

Looking for a new neurologist. My current neurologist no longer wants to see me. First he canceled my appoint in January 2023. I had a break thru seizure not even two weeks later, and the communication from him to me has been very little since then. Oh, I’ve sent many messages. Still, he failed to contact me, even when when my blood levels were really low! My family doctor even sent him high priority messages, of which he never responded. That doctor is , neurologist RAVINDA SAMARAWEERA, “Dr. Sam” at Sanford Clinic in Fargo, ND. Do not go to this doctor. Yes, he seems very nice, but his follow thru is terrible. Can someone from Mayo or ? suggest a good neurologist?

TJBB

@tjbuch61, I'm sorry that you were not able to get consistent care and followup.

The National Association of Epilepsy Centers rates all Mayo Clinic campuses as level 4 epilepsy centers, which provide the highest level of diagnosis and treatment options for people with epilepsy. If Mayo Clinic is an option for you, you can request an appointment yourself or your family doctor can make a referral. You can learn more here: http://mayocl.in/1mtmR63

Learn more about epilepsy care at Mayo https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102

I have an appt already, just need to check with my insurance. Thank You!

Fantastic. Fingers crossed that insurance works out too.

@tjbuch61, Good Morning
I hope all goes well with this appointment with this new doctor. Fingers crossed for you as well!!!!
As I have mentioned in many posts, I have seen a great difference in my treatment by my epileptologist (a neurologist who is specialized in epilepsy) compared to the other doctors I have seen (neurologists and psychiatrists) before.
Have a nice Sunday!
Santosha