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Should we go to an Epilepsy Center?--need advice and opinions

Mon, 02/20/2006 - 07:16
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 clinn67 on Mon, 2006-02-20 - 07:44
Yes you should absolutely go and get a second opinion and I think it would be worth it to travel to St. Louis for it. You should get a copy of all the original EEGs and anything else you have(ct scan or mri). Call and find our how long it will take for them to make copies of these and then make an appointmnet in St. Louis. You can even use the info you get from the Epilepsy Center and bring it back to your own neurologist. Good luck to you and your son. I know this is all so scary but getting more information from real experets will help.

Re: Should we go to an Epilepsy Center?--need advice and opinion

Submitted by mommy2kyra on Mon, 2006-02-20 - 09:22
Hi Leslie, I would definitely recommend going to the Epilepsy Center. You and your family deserve to know that everything that can be done for your son *is* being done. Doctors should explain the diagnosis, possible treatment/s, as well as the prognosis to you. Finding out about these things isn't over-reacting. It's merely educating yourselves about epilepsy...in particular, your son's...and that's something that you *need* to do. Best of luck to you and your son! Heather :)

Re: Re: Should we go to an Epilepsy Center?--need advice and opi

Submitted by guitarmomma on Mon, 2006-02-20 - 10:02
I have heard wonderful things about the St Louis Epilepsy center as well! I am sorry the neuro was so dismissive to you. First appointments and a diagnosis are a big thing and so much going through your mind as well as your son's. He should have spent enough time with you. Did he start medication? (sorry, I do not remember from the other thread)..... I think second opinions are a great idea. Also, a good source for info for teens dealing with diagnosis is http://www.epilepsy.ca/eng/mainSet.html this is a Candian site but the information is good and layed out well to understand. http://www.epilepsy.com/info/teens.html Hang in there! Gin

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