Looking for the best neurologist

Posted by debint @debint, Aug 6 11:06am

I AM LOOKING FOR THE BEST ‘ADULT” NEUROLOGIST WHO ALSO SPECIALIZES IN LGS SINCE i AM NOT SURE THAT THIS DIAGNOSIS IS EVEN CORRECT. I AM WILLING TO TRAVEL TO THE MAYO CLINIC IS NEED BE. I HOPE PEOPLE ARE ALLOWED TO GIVE RECOMMENDATIONS HERE. I AM IN DIRE NEED AND A VERY FRUSTRATED MOM. PLEASE HELP[

Liked by Leonard

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

REPLY

@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.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
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

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@jakedduck1

@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.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
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

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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.

Liked by Leonard

REPLY
@debint

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.

Jump to this post

@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

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