← Return to Looking for the best neurologist

Discussion

Looking for the best neurologist

Epilepsy & Seizures | Last Active: Mar 19, 2023 | Replies (9)

Comment receiving replies
@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

Jump to this post


Replies to "@debint That’s a difficult question to answer however I totally agree with Colleen Young. I wouldn’t..."

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.