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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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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,

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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.