Hello

[Doreen]

Hi Im Doreen a mom of a 17 year old girl Lindsay.
Lindsay has had epilepsy since the age of 6 months. She had encephalitis I am member of another group for encephalitis.
Lindsay had her frist seizure at 6 months and was doign ok with meds until her quality of life was diminshed. She had brain surgey to remove a piece of temporal lobe on the right side,where her seizures were comming from. The surgery was successful. she was havign abotu 100 head drops a day cut back .
Lindsay has taken all kinds of medicatio to try and help her seizures. her last BIG seizure was in 2005.
But has had twitches since then..just resently I took her for her follow up and the Dr. told me they were Motor twitches..so wanted to begin a medication decrease this has started.. medication Tegretol
this decrease is going ok she has not had any seizures and twitching the same amount.
Th question is.. Does any one know what side effects there could be with her tegretol medication decrease?.I find her more confused than usual and unable to get a simple sentence or statement out . moody btu this may be TEENAGE related lol
I thought that she woudl be less tired btu that hasnt changed.

thanks
Doreen

Lindsay take
tegretol...
topamx
epival

Ill write more as I go along..just too much
ask questions if you like..its easier to answer

[Bernard]

Hi Doreen, welcome to the forum.

Th question is.. Does any one know what side effects there could be with her tegretol medication decrease?.I find her more confused than usual and unable to get a simple sentence or statement out . moody btu this may be TEENAGE related lol
I thought that she woudl be less tired btu that hasnt changed.

I would have expected a decrease in medication to lessen confusion and brain fog. Perhaps she is experiencing more partial seizures with the drop in medication.

Lindsay take
tegretol...
topamx
epival

Epival/Epilim/Depakote (sodium valproate) turned my wife into a zombie - brain fog as thick as pea soup. Everyone tolerates drugs differently, but you might ask her neurologist about reducing that one and see if the perpetual confusion abates a little.

[Doreen]

The epival that she is taking..well that is the reason why they have started decresing her tegretol??
Im more worried because she isnt remembering things at school..little notes and things. Her teacher told me this...I have been mentioning that I find her more confused than usual and unable to get a simple sentence or statement out yoru probably right with the particla seizures.
The tegretol was decreased
october 28th 2008
8 weeks then she had another decrease december 1st 2008..and will have another decrease on January 26 2009 after that she has to have a 6 hour telementry on February 6th 2009.

meds now are
Epival.....6 tabs am & pm 125 mg
tegretol...1 tab am & 1 -1/2pm 400 mg
topmax...4 tabs am & pm

I Guess I shoudl just watch her closely and take notes...
I agree I thought that the meds would make her less tired and less confused

thnaks Doreen

[skillefer]

Hi Doreen! Welcome to CWE. Honestly, I don't know about tegratol. never have taken it. However, you might want to do as Bernard suggested. Depakote is also prescribed as a mood stabiliser. If your daughter has gained any weight or lost weight, the dosage may need to be adjusted.

[RobinN]

Has her liver been tested recently? Those drugs can be very toxic to the liver, and if it isn't draining properly it can have a huge impact on her emotional stability.

Tegretol was the first drug prescribed for my daughter. It did not sit well in her system.
I think she became toxic quickly. Created simple partials, psychological distress (I thought was due to the illness), and vision loss. Taking it away cleared some of the issues up after about a month.

BTW - Welcome.

[Doreen]

Yes she has had her blood levels done in september and both were good.
Just wonderign now if i should have them done again?

ok so now Im getting comfused ..you stated the medication Depakote
which is the name of lindsay medication?

[Bernard]

Epival, Epilim and Depakote are all different brand names (marketed to different countries) for the same basic drug - sodium valproate.

[Doreen]

she is being decreased with her tegretol..so I would think that her moods/behavior would get better? and less tired...ughhh

[Doreen]

oh oh..something is really going on.
lindsay goes to special needs school i forgot to mention that. she is doing ok but for the past little bit her behavior has not been good..and like I said she is haiving ahard time remembering..
Today I received a note that there was an incident on the bus on monday seems lindsay along with other two students was bullying another student on the bus..this is NOT her..I will have to call her neurologist tomorrow and talk with him..I just don't know anymore...
Thanks for lettin gme vent!

xo