Son with epilepsy and I'm falling aprt!!!!!!!!

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garrettsmom
New Member


Date Joined Nov 2005
Total Posts : 3
   Posted 11/14/2005 8:20 AM (GMT -7)   
Hello everyone My name is Amy and I am new here. My son is 6yrs old and was diagnosed with epilepsy in March 0f 03. He started out having 20 to 30 seizures a day, many trips to er rooms and doctors. He was put on trileptal and did fairly well for 6 months only having maybe 1 to 2 a week, after the 6 months of doing good he started having break through seizures and the trileptal was uped and didnt help so they kept uping the dose to try to get him back under control. In March of 04 he had break throughs again back to the 20 to 30 seizures a day and has went down hill since then. He was diagnosed with frontal lobe seizures, but has many different types of seizures, they're saying there starting in the front of his brain and working there way back. My son has been through so many eeg's ( all of which have come back abnormal) and to so many doctors and shots and iv's its breaking my heart , I feel he hates me for this because he don't understand and how can i explain this to him when I don't even understand why??? 2 years later my son is on trileptal,Keppre,Topamax,Clonazepam and B-6 vitiams, wearing glasses now because some how his vision has gotten so bad, had him to the eye doctor the 10th of this month and his eyes have gotten so bad they have to up his perscription on his lens 50% to get him back to 20/20, he is now having memory problems, my son is in first grade and has done been put on homebound and finally got to go back and now because of memory and behavorial issues is failing 1st grade.
He has so much anger and gets upset so easy its hard. He gets so mad he will beat himself in the head, hes been tested for OCD because he will get so mad if something is out of place or isnt the why he thinks it should be that he will put himself into a false seizure ( thats what the DR. called them)
We were told the only thing left to do is brain surgery and that wont come until June!! Scariest thought in the world!!
After being admitted to pittsburg the end of last month on the 24th he had 25 seizures that day and 28 on the 25th after being put on new meds they finally stopped last week and it was the greatest thing in the world to see my son go a week without these seizures, Last night while sleeping he had 3 seizures and this time when he had them he peed himself and he's never done that before!!!!!!!!!! We cant catch a break and sorry so long but just needed to get somethings off my chest, have no one to talk to !!!!!!!! Thanks Amy

Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 11/14/2005 2:04 PM (GMT -7)   
Please promise us you'll keep writing-you've always got someone to talk to here.  Please hang in there.  I don't believe he hates you.  He knows you love him and are there for him, even if it's the part of him that is angry that you see.
 
Uhura

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 11/14/2005 2:42 PM (GMT -7)   
Hi and welcome. I am so glad that you found us. I feel for you so much. And I do not think he hates you at all. You are doing the best that you can for him and that is great. I hope your son gets good control from his med combo. I am happy that he got to be seizure free. Please keep us updated. Take care, Tracy
 25 years old
Nursing Student


garrettsmom
New Member


Date Joined Nov 2005
Total Posts : 3
   Posted 11/14/2005 5:23 PM (GMT -7)   

 Thank you guys so much for your replys, It means a lot to me!

Its nice to know that there is someone out there to talk to who understands what we are going through.I know my son loves me but it is so hard to watch him have so much anger for what is going on and have so much resentment. He started therapy last week so hopefully something good will come out of it, but still the question of am I doing the right thing, does my son really need therapy, remains in the back of my mind?

Again thanks so much for listening and I'll keep u posted.

Amy


sonjarenee
New Member


Date Joined Oct 2005
Total Posts : 15
   Posted 11/14/2005 8:58 PM (GMT -7)   

Hi Amy,

I'm glad your son hasn't had any seizures.  I hope the therapy works out for him, and everything will get better :-)


goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 11/14/2005 11:27 PM (GMT -7)   

Hi Amy-

You've been through a lot with your son and no doubt will have many challenges ahead.  You've done a GREAT job supporting your son and being there for him. I Don't blame you for feeling the way you do.  You said that surgery was an option?  I had brain surgery almost 5 months ago and I know exactly what you mean when you say "scariest thought in the world".  But I'm glad I got it done, as my future otherwise wasn't very promising just taking medications.  If you should come to that point in his treatment, take a deep breath and move forward - The odds are on your side that surgery might cure him.

Give yourself some credit for everything you have done and everything you are about to do!  The most important thing is to support and love him.  He's definitely not striking out at YOU.  It's the situation.       HUGS,     Glenda :-)


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


pat20
New Member


Date Joined May 2005
Total Posts : 3
   Posted 11/18/2005 4:42 PM (GMT -7)   
Hi Amy
Your son is in his own hell. God help, him. He will need strenth (by the way i can't spell) and lot's of it
keep your spirts up
nothing else for it
mad  

Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 11/18/2005 5:55 PM (GMT -7)   
Are things any better today?  I hope so but if not, hang in there. 
 
A couple of questions for you.  1:  Is it possible there is a connection between his vision problems and Lamictal.  When I was on a higher dose about an hour or two after I took it things would be blurry for an hour or so.  Balance was off when the dose was even higher.  and 2:  Are his electrolyte levels being checked?  I ask because Trileptal lowered mine and gave me seizures if they were too low.  And the term 'false seizure'-no such thing.  It may not be on an EEG but it is not in his control and is very real.
 
Uhura

garrettsmom
New Member


Date Joined Nov 2005
Total Posts : 3
   Posted 11/19/2005 8:49 AM (GMT -7)   

Hey everyone, Garrett is doing good, was on the phone with his doctors thursday and they lowered his topamax down because he was having memory problems, they sent us back to the eye doctor to have his pressures checked in his eyes and they were fine.(from my understanding since his pressures were fine its not the meds hurting his vision) He has blood levels done for trileptol and topamax the trileptol is at its max and cant be raised any higher, the topamax not sure, he goes the 23rd to have it checked but as far as that, thats all that is being checked.

Thanks Amy

 

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