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please someone any advice at all.........daughter newly diagnosed

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Posted 11/18/2006 3:58 AM (GMT 0)
  I have been reading through the posts,some very serious,some funny,some were liberating. Being afraid for my daughters future,and everyday life activities.........is draining. My how things ome out of the shadows. MY DAUGHTER has no previous health problems,shes 13,first and only child.

  I don't know how the meds will be to her,thats scary.Carbatrol for now.

 I don't like the idea of eeg tests that try and induce seizures,thats scary.

 A MRI TO RULE OUT MAJOR issues I can see that. I AM SO scared.a sickness is with me it comes and goes.I WILL raise her awareness to live life fully,and thats the bottom line,CAN ANYONE RELATE TO ME??????????

IS THERE A CHANCE this is horomone related she just started cycle this month. NEUROlogist says no.MAYBE im looking still for another reason WHY....WHY.... WHY NOW???????? confused

Posted 11/18/2006 5:05 AM (GMT 0)
Hi,  This would be worrying for you not knowing what the future holds for your daughter, however, it will help her cope,if you can be strong for her. The EEG is not a real big deal, the idea is to see if they can induce a turn and the eeg will show a different pattern on the test . Even if it doesnt induce a turn , the operator will ask her to do breathing exercises ,open/closing eyes.

All this will assist the neurologist in reading the test and seeing what area of the brain, the epilepsy is coming from. The mri scan will give a clearer result as to where the epilepsy is. It may be possible that medication may control it for her, however , after trying many medications your neurologist "may" suggest thinking about surgery to remove it, but only surgery if it safe to do so,a lot more testing would be needed for this.

 You are facing a lot , but with time , when you start getting test results you will have a better understanding of your daughters situation.  When you see your neurologist dont be scared to ask questions ,regardless of how irrelavant you think your question is, your specialist is there to help you. If you feel he/she is not taking a genuine interest in your daughters case, ask your local epilepsy association to reccomend a good nuerologist for you.

  I had epilepsy for 44 years, I am epilepsy free since surgery 10 months ago.

                                  Good Luck   Aussie2006

Posted 11/18/2006 8:42 PM (GMT 0)

Della,

   It's possible that your daughter has juevenile onset, which can be brought out in people with predispositions during adolescents.  That's what happened to me.  I was also diagnosed right after I started my cycle when I was thirteen.  I responded to your other posting, and there is more information there, but if you have further questions I would like to talk to you.  I hope all is well, Danielle

Posted 11/19/2006 3:24 AM (GMT 0)
Please read epilepsy and JPA Brain Tumor, that has a brief outline about what my daughter has been through.

Posted 11/19/2006 4:15 PM (GMT 0)
DEAR DANIELLE B:

 THANKYOU ........ your reply helped. I AM praying that  the medicine will work reliably. I tend to look at things factually,as I see there was stress

 at the beginning of SEPTEMBER ,actually the day school started back,MEGGAN (MY DAUGHTER) ALSO was starting classical piano lessons.

I NOTICED right before the lesson she was extremely anxious,or nervous.

 ALSO CYCLE HAD NOT STARTED yet for her.SO STRESS WAS PRESENT.

  SHE will be fine. The first seizure was on the day she returned to school

9-7-2006 and it came right after the evenings first piano lesson.SAME DAY.

to date 6 episodes in three months. I NOTICE A SEIZURE PRESENTS ITSELF AFTER A STRESSFULL EVENt not before,thats interesting. ITS LIKE THE ACTIVITY DOESN'T come til hours after a stressfull event, and after thew mind starts to relax. I am so appreciative to forums like this one,and to people who can relate their stories.....thanks again :-)

 

Posted 11/20/2006 2:32 PM (GMT 0)
Della, welcome to HW. There is a type of epilepsy called catamenial epilepsy that refers to epilepsy that is particuarly worse around cycle and is hormone related. I am sorry to hear what you are going through. You are never alone here. Even if it is just to vent you will find open ears. If you are unsure of the advice of your neuro...you always...always have the right to seek a second opinion. I hope this helps. please keep us posted.
Posted 11/20/2006 11:55 PM (GMT 0)
DEAR HALO,
thank you so much,I will look into this information,and also ask the doctor about this type of epilepsy.I SUGGESTED to the neuro that somehow this could be horomones
and such,he actually said no,but you better believe I'll merntion the exact term for this type... I'll keep you posted. again thanks
Posted 11/22/2006 2:04 AM (GMT 0)

Della,

  I am glad to hear that my posting helped.  My seizures are the same way, when I am stressed out about something the seizure doesn't happen until after I've released all the pent up energy the stress had caused.  I have you and your daughter in my thoughts and if I can be of any more help please let me know :-)

-Danielle

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