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newly diagnosed

Tue, 11/07/2006 - 23:33
My son who just turned 11 has been diagnosed with generalized epilepsy. We noticed staring spells this past summer and by the end of summer they were becoming more dramatic. His EEG showed the spike wave for absence seizures. The pediatric neurologist our family physician referred us to started him on zonisamide, seven days later he had a tonic clonic seizure for the first time. they increased the zonisamide and a week later he had another one, the next day two more and the next morning another one. He was having seizures and sleeping more than he was awake. They started him then on Depakote through an IV 600mg. He is taking 250 mg (depakote ER) in the morning and 250 at night, plus 100mg of zonisamide at night. He did well for the first 3 days, then started having seizures again yesterday two bad ones. This morning he had one but less dramatic with a faster recovery, and really long absence type seizures in the early afternoon. Sorry this is so long but am wondering if anyone has any helpful info. I don't know if his seizures would have gotten worse anyway or if the zonisamide made them worse. I feel like I want to get him off of the zonisamide, but I am not a doctor and am probably just worried because they got worse after he took it. Any info would be appreciated!

Comments

Re: newly diagnosed

Submitted by Anonymous on Tue, 2006-11-07 - 23:54
Welcome to the site! Sorry to hear all that has been happening. I hope you have a chance to look around - some of the info on meds and seizures may help as you try to understand what is happening. Here are a few links to check out.

www.epilepsy.com/101/101_epilepsy.html

www.epilepsy.com/epilepsy/types_seizures.html

www.epilepsy.com/web/animation.php?swf=what_is

www.epilepsy.com/epilepsy/seizure_medicines.html

www.epilepsy.com/info/family.html

It's hard to know what changes may be related to starting or stopping a new medicine, and what may be related to the seizure disorder. Keeping a record of what you see, how often they occur and any other details will help as you work with the doctors. Ask lots of questions! There are also neurologists who specialize in treating seizures that may be helpful or worth checking out if further testing or treatments are needed. The Find a Doctor feature here can help people find doctors who specialize in epilepsy.

www.aesnet.org/Visitors/PatientsPractice/find_a_doctor/aes.cfm

Good luck and keep us posted on how you are doing too!

Epi_help

Epilepsy.com Resource Specialist

www.epilepsy.com/101/101_epilepsy.html

www.epilepsy.com/epilepsy/types_seizures.html

www.epilepsy.com/web/animation.php?swf=what_is

www.epilepsy.com/epilepsy/seizure_medicines.html

www.epilepsy.com/info/family.html

It's hard to know what changes may be related to starting or stopping a new medicine, and what may be related to the seizure disorder. Keeping a record of what you see, how often they occur and any other details will help as you work with the doctors. Ask lots of questions! There are also neurologists who specialize in treating seizures that may be helpful or worth checking out if further testing or treatments are needed. The Find a Doctor feature here can help people find doctors who specialize in epilepsy.

www.aesnet.org/Visitors/PatientsPractice/find_a_doctor/aes.cfm

Good luck and keep us posted on how you are doing too!

Epi_help

Epilepsy.com Resource Specialist

Re: Re: newly diagnosed

Submitted by cb5 on Wed, 2006-11-08 - 00:39
Thanks for the information. I have been to almost all of those pages, I will check out the others. Sometimes the more I read the more frightened I become. There are so many different types of seizures and syndromes. Thanks again, ~cb5

Hi .. I'd strongly advise

Submitted by solis on Wed, 2006-11-08 - 01:15
Hi .. I'd strongly advise you to take your son to an epileptologist. I had seizures since I was 3, but was NEVER completely controlled by any (of the many) neurologists I saw... Only when I saw an epileptologist (=a neurologist that is specialized in, and who focuses on, the more than 40 types od epilepsy) was I completely controlled. (On a drug combination that my many former neurologists opted to ignore) Eg. The website epilepsy.com is put together by epileptologists & you have stated that your son has generalized seizures... Note: what is said about Zonisamide: "Zonisamide is used for partial seizures—that is, seizures that begin in a limited area of the brain. Sometimes these seizures spread throughout the brain (generalize). It is approved to be used as adjunctive therapy—that is, to be added to other seizure medicine." http://www.epilepsy.com/medications/b_zonisamide_use.html Initiallly, your neurologist put your son only on Zonisamide, yet Zonisamide is NOT recommended as a solo drug for primary generaized seizures. The info on Depakote: "Depakote is a widely used and effective treatment for epilepsy. It can be used alone or with other seizure medicines to control absence seizures, either alone or with other seizure types partial seizures (seizures that begin in a limited area of the brain)" http://www.epilepsy.com/medications/b_depakote_use.html So it IS used for generalized seizures as long as they are absence seizures. Primary Generalized & Partial Seizures: http://www.epilepsy.com/epilepsy/types_seizures.html Know I wish you (and your son) the very best, Oh... and welcome :) ~sol

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