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Should we go to an Epilepsy Center?--need advice and opinions
Mon, 02/20/2006 - 07:16Topic: Parents & Caregivers
My 14 year old son has just been diagnosed with simple and complex partial seizures (temporal lobe). He may have been having the simples for several years, intermittently, but suddenly developed complex ones and has had several in a two-week time frame. Very sudden and scary.
The neurologist was very kind, but totally dismissive and only spent about five minutes explaining anything to us.
We have (thankfully) very good health insurance and can choose our own providers.
Three hours away, in St. Louis, is an Epilepsy Center (Washington University) that does everything from First Seizure diagnosis/counseling to Intractable Cases. On the website, they say they give "extensive education" to new patients/parents.
As far as I know, my son has not even had basic bloodwork done. They took blood at the ER, but other than hearing it was "normal" I have no idea what they even looked at.
I feel like this condition at the very least, warrants us finding out everything we can. I don't want to freak my son out, or overreact.
Is it the right thing to do, seeking a "second opinion" and expertise, or should we wait and see how he does?
Thanks,
Leslie
Comments
Re: Should we go to an Epilepsy Center?--need advice and opinion
Submitted by brikhaus on Mon, 2006-03-27 - 17:35
Hello Leslie,
This is my first time posting since I just found this website but I felt compelled to reply to your post.
My daughter was diagnosed last Aug with abscence seizures. Our pediatrician referred us to Children's Hospital in St. Louis so we take her to the Epilepsy Center and they are wonderful. I can't rave enough about Children's Hospital--my daughter counts the days until she can go see her "friends" at the center. The staff are nurses and physicians of Washington University. Would you be taking your child to Children's Hospital or a different Washington University Hospital?
I think you sound like a great mom who just wants answers. I'm learning in life you have to be your child's advocate. Don't stop until you are satisfied with the answers.
Best of luck to you,
Beth
Re: Should we go to an Epilepsy Center?--need advice and opinion
Submitted by ekoorb on Fri, 2006-04-21 - 21:36
100% get a second opinion. We had the same experience. It is amazing to me that certain neurologists became pediatric specialists when they have such horrible bedside. No doctor should give you only 5 minutes like that. Our first neurologist did the same thing. Excuse my language but he was such an arrogant -SS! We got into a epilepsy specialist group and it changed our life. The first meeting, the doctor met with us and discussed our daughter's condition for one and a half hours. He helped us understand and feel more grounded. My eyes actually filled up with tears in the middle of the meeting because I was so happy to have a compassionate informative doctor in front of me. You need someone who is willing to take the time to answer your questions and concerns. The three hour drive is definitely worth the time and gas money. Good luck.
Re: Should we go to an Epilepsy Center?--need advice and opinion
Submitted by Jenny55 on Mon, 2006-02-20 - 11:00
Leslie, There is definitley nothing wrong with a 2nd opinion & in fact, I would encourage it. Your son is very young - you are fortunate to have good insurance & free to pick your own health care provider. There are many wonderful doctors, so it will not hurt to have another one check your son out. Sounds like you probably live in MO but I know that Johns Hopkins in Baltimore, MD & the Mayo Clinic, (FL, MN, & AZ), all have excellent doctors & facilities. Since your son's seizures come from the temporal lobe - have they mentioned or offered surgery? If someone has to have epilepsy, having them in the temporal lobe is the best - easier to correct with surgery. Wishing your son the best!! Jennifer