We just got the results back from my son's sleep deprived EEG and there is abnormalities in the left temporal region. The doctor has prescribed Valporic Acid. We still have to go the CT Scan but that is not until mid November. He has a range of seizures from Absence, Complex Partials that generalize (arm and leg movements) every day. His record was 2 days without one. He remembers some, others not at all.

We are reluctantly starting with the meds on Friday - I say reluctantly because of side effects, but we need to do something. Has anyone here had Valporic Acid??? It isn't a name I recognize as seeing here before? Anyway any insight, info, advice would be appreciated.

I didn't mean actually leaving the board in my subject line and I can't change it after submitting. No references were intended (really).

[This message has been edited by gypsy (edited 10-22-2003).]

HI GYPSY
I DON'T KNOW ANYTHING ABOUT THE DRUG YOU ARE REFERRING
TO. I JUST WANT YOU TO KNOW THAT I AM THINKING ABOUT YOU AND YOUR SON. I PROMISE YOU AND YOUR SON WILL BE IN THOUGHTS AND PRAYERS.
PLEASE LET ME KNOW IF THIS NEW DRUG HELPS HIM. KISS HIM FOR ME AND TELL HIM HE HAS A NANNER OUT THERE THAT LOVES HIM.
GOOD NIGHT,
NANNER

Thanks Nanner, you made me smile!!! I've just learned that the other names for Valporic Acid are Epival, depakene and depakote. So this sheds a wee bit more light on it for me.

Thanks

Hi Gypsy,
I hope your son gets the right meds etc. I wish you well. "E" is such a devastating disease if the seizures aren't controlled. Best wishes in keeping your sweet son seizure-free. Kathy

Hi Gypsy,

It's Lynn, (Kyle's mom) Valproic Acid is the medical term for Depakote among other brands of medicine. Kyle is presently taking Depakote (1250 mg) for his symptoms of Deja vu, confusion, etc.

His side effects have been tiredness, increased appetite, and sometimes it seems as if the medicine can make him irritable. He says that it has taken away much of the deja vu and the fear he was feeling.

He is now being weaned down to 500 mg for his 48 eeg on the 31st. He has only been weaned down to 1000 mg so far and he says his symptoms have increased. He is scared to wean down anymore. So I guess he feels that the medicine is helping him.

He had his MRI on Sunday and will have his 48 hr eeg on the 31st and our appt. with the neuro. is on Nov. 15th.

What happens if all his tests come back normal?? Could he still be having seizures?? Any feedback would be appreciated.

Take care,
Lynn

The meds scared me to death at first too!! My dd is on Tegretol now, but started with neurontin.

I hope the first drug helps for you, but don't get to upset if you max out on it and have to try something else. First they have the find the right drug for him, and then as he grows his chemical make up in his body will change....so there will be changes in doses too. http://www.healthboards.com/ubb/frown.gif http://www.healthboards.com/ubb/frown.gif http://www.healthboards.com/ubb/frown.gif

Anyway, I know the one thing all of the neuros I have been to for her said....save DILANTIN as a LAST resort for control in kids. It causes wieght gain, and has some other long term affects. So just be careful, and follow the docs advice!

Lindy

[This message has been edited by momof3mjt (edited 10-23-2003).]

Thanks for the responses. I was fully expecting Jon's EEG to come back normal - was I wrong! I had always thought that unless they actually seize at the EEG it would probably show normal. I guess though that it is quite common for the tests to show normal but that doesn't mean that they are not having seizures. Does that help answer your question Lynn? Sounds like Jon and Kyle are on the same meds. Jon did tell the dr. that he was quite cranky after his seizures (that was an understatement) and tired. Glad to know that Kyle's having that EEG, I guess you never got the results back from the MRI yet? Jon's CT Scan is mid November - I hate the waiting, it's driving me crazy!!!! I think we'll start Jon with his meds tonight as he doesn't have school tomorrow and we have to do something. He had a seizure at school today and found himself outside the Principal's office not knowing how he got there. Some kind and caring student helped him out. Nice to know there are good people out there!!

Lori

Lori

Lori

Gypsy....i can definately relate to you....my 4yr old daughter was diagnosed with "E" about 2yrs ago....she is currently on valporic acid(which is the same as depakote)and she also takes tegretol...with her on both meds they do cause irratability,it does cause increased appetite but i have been lucky on that part my daughter only gains the normal weight that children gain..and when she is hungry i give her fruits so that helps her not to gain weight..my 2yr old son also has"E"and he takes tegretol elixer..the ironic thing about both my kids have had eeg's and both my children have the "E"'s coming from the left temperal lobe.....i don't know how old your child is but i can relate to everything you are saying...hope everything goes well with your child......

HI Lori,

No I haven't gotten Kyle's MRI results back yet.
The EEg will be on the weekend of Halloween and then our appt. is on Nov 15th. Hopefully we will got some answers.

Take care,
Lynn

I hope Jon does well on the medicine. Like I said, it seems to have helped Kyle quite a bit.