too much medicine???are the doctors know what they doing??? - Epilepsy Message Board

pauln · 06-26-2004, 07:34 AM

My 3-year old son had tonic-clonic type seizure twice[~2-3 min] and after
the doctors put him on valproiate acid .
The EEG test was normal was at the first time[before he started any medication] ,but the 2nd EEG showed epilepsy.
After he start the 1st medicine the seizure changed to complex partial[head movement,cry out,~1-2 sec]
He had ~6-8/daily ,the neurologist increase the dose to the max.
Then the 3rd EEG was made after that, which showed worse epileptic brain-function.The doctor said its the medicine cause that.
He said the will try some adoter kind of medicine,so decreise the Valproiate
and start Tegretol

That was a really bad choice because the seizures went up~16-24/day.
Next step increase Valproiate again, decrise Tegretol .
There was 2 days in this process seizure free.

Here comes the twist, they try to keep on that level +
give a 3rd medicine :Keppra .....[adults&6Years up]

So right now my son on 3 medicine :
-- Valproiate acid 375 mg/day
-- Tegretol 300mg/day
-- Keppra 750mg/day

He`s weight only 16kg.
Ohh and I almost forgot the seizures are still 2-4x/day.
If anyone can help please do.
A worried dad

kayakmom · 06-27-2004, 02:05 PM

Hey Dad, I would suggest that you get a second opinion or try to get him to an Epilepsy specialist. It sounds like a lot of medication that is not helping enough.

I would also look into the Ketogenic diet to see if this may help him. It is very challenging to do it, but worth it for control of seizures.

Yes, in theory the doctors know what they are doing, but they are not perfect. Sometimes a new perspective is in order. Find a neuro who listens to you and works with you for bets quality of life and control!

LisaGuthrie · 06-28-2004, 10:24 AM

Hi Dad,

When I read posts of new parents starting this journey it makes me want to cry. The worry you feel is normal and a part of helping you cope with seizures in your child. I will never forget the fear of seeing my little ones have a seizure! Nothing even comes close...

I have 2 E kids, Jake 2 1/2 years old and Jenny 15 years old.

Please try and find another Dr to take your son to. When you add more then 2 of these drugs together, it is so hard for the child. At one point Jake was on Dilantin, Tegratol, Trileptol and Lamictal at the same time and still we were not able to get control. Currently he is only taking Lamictol and Trileptol.

Check into the Ketogenic Diet. That is what we are currently using for Jake in addition to his meds. He has been on it for nearly 2 months and we are lowering medications every two weeks. Please note that this is a form of medical treatment and should not be tried on your own. Find a Dr and hospital in your area that support this as a valid form of seizure control.

There are a couple of books you should pick up, but I don't have all the information on them here at the office.

Will get back to you on that one.

Love and light,

Lisa and kids

robyn007 · 06-29-2004, 03:34 AM

My brother had seizures everyday like that until he had surgery that was performed at N.I.H....He has been seizure free ever since. That was about 6 years ago. Has your sons doctor ever mentioned surgery for him? There are alot of tests that he will have to go through before they can determine whether or not he can have surgery to correct the epilepsy.

Best of Luck
Robyn

janetl · 07-02-2004, 09:24 PM

A new doctor might well be in order! I was told that children's EEGs are hard to interpret by the Dr who diagnosed me after I spent a year in special ed with a psychiatric diagnosis. Also, the first drugs they try are the ones that work for the largest number of people, and cause the least problems. Therefore you might need to try several to get it right.

REMEMBER THAT YOU ARE THE CUSTOMER AND HAVE THE FINAL SAY!!!! Read every thing you can find (JAMA.com, a medical journal, can be informative). If you get in the doorway when the doctor starts to leave you can get all your questions answered!

It may also be somthing that will improve slowly. Believe me, partial complex is a marked improvement over clonic tonic. My records say I was having 10-15 daily when I was diagnosed at 11, I was down to 2-3 per week in colllege, and got a drivers licence in my mid 20's. It was realy hard to get under controll because of the lenght of time I had been uncontrolled. There is also a point at which the seizures are better than more side effects.

I know it is scary, but it has also given me alot of personal strengths.

Good luck,
Janet