Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

New Here, Worried/Concerned...Please Help : (

Fri, 01/06/2006 - 09:53
Hello all, I'm hoping someone can help me sort out my confusion and worries. My name is Anne, and my sweet, bright, handsome son (about to turn 9 this month) has had quite a strange year (in 2005). He had 3 seizures in about 28 hours back on December 1st and 2nd. Two "focal", and one "tonic clonic" (the whole body one). These took us by complete surprise - there is no history of epilepsy or seizures in our family. He had no fever, nothing had changed in his life that we are aware of. Okay, the reason I am concerned, is that I feel his health is declining, and I feel powerless, helpless, and totally confused. History: *Perfect health til 2005 -- rarely sick, ate really well, etc. *Summer 2005 -- he developed hypertension, resolved after 3 months, we still don't know why (he is not even remotely overweight, very healthy eater). *Fall 2005 -- he became frequently fatigued, irritable, tired all the time. Started looking paler than usual. *December 1st and 2nd -- the seizures. *EEG abnormal -- sharp wave pattern in temporal lobe region. *CT scan -- clear *MRI -- "normal", incidental finding of cyst on/in pineal gland *Official Diagnosis = "Focal Seizures" *Very, very thorough bloodwork reveals everything to be totally normal -- he did test positive for Mono -- not acute, so maybe that explains his fatigue???? But doctor said most people do test positive for Mono, so this is not entirely helpful. Sleeping and eating haven't changed much, yet he is soooo tired all the time. Could he be having seizures at night we are unaware of? Would an overnight EEG be helpful? I am sorry this is so long, I hope someone here can help me or give me some insight or guidance. I feel like my son's health is deteriorating and NO ONE has ANY anwers! : ( Thank you so much to anyone who can offer any advice... Warm Regards, Anne

Comments

Re: New Here, Worried/Concerned...Please Help : (

Submitted by Mom2Chris on Fri, 2006-01-06 - 10:42
Hi Anne: My heart goes out to you, becasue I know how you're feeling. My beautiful 8 year old son was just diagnosed with Epilepsy in December 9 2weeks before Chrsitmas). He's had 2 partial complex seizures. He also was very healthy and energetic, and there is no history of seizures in either my or my husband's families! This took us by completely surprise and of course we are frightened and confused! I'm not sure I can offer any guidance since I'm as lost as you are (of course you're also dealing with other stuff). But I would tell you that YOU are your son's voice. He CANNOT tell doctors what's going on, so you have to be his advocate. I would request a second or even third opinion regarding his hypertension, or even request a pediatric endocrinologist. Have them check EVERYTHING. Leave no rock unturned. Regarding the Epilepsy, my doctor recommended Lamictal as the drug with the least desirable side effects. I will pray for you and your family. If you'd like to correspond, I can be emailed at: maureen.portillo@coair.com. Best of luck to you. You are not alone. I have discovered that there's unfortunately A LOT of us going through similar stuff. Maureen

Re: Re: New Here, Worried/Concerned...Please Help : (

Submitted by annemom on Fri, 2006-01-06 - 14:26
Thank you so much Maureen -- I appreciate the reply. I did email you! Best, Anne

Re: New Here, Worried/Concerned...Please Help : (

Submitted by rootbeergirl16 on Fri, 2006-01-06 - 11:01
Dear Anne, Welcome to the site. I to have a 9 year old that was Dx in october of 2005 so i am very new to this whole thing also. I have found so much support and info here. I so wish that i had the magic answere for you I thnk that the changes to the brain can bring on fatige as well as the medications if he is on any also childern at this age are growing at such a fast rate that they do get naturally tired more so than before. Please make sure that you are comfortable with the doctor you are working with they should be able to help you sort things out. Personally I had my daughter to 3 neros til I found a really good one that would answere my questions and validate my concerns. Remember you are never alone ther are lots of parents here and some very wise people that deal with E on a daily basis and we are more that happy to help you and listen to you. Best regaurds Pam

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.