Re: Reply to CCF Neuro[P] MD, RPS re- Benign Infantile Sezures

Posted By CCF Neuro[P] MD, RPS on December 31, 1998 at 08:31:48:

In Reply to: Reply to CCF Neuro[P] MD, RPS re- Benign Infantile Sezures posted by RCRUM on December 29, 1998 at 01:34:48:






Thanks for your response to my questions. To follow up,the last penobarb level was down to 46 and she was still having a seizure a day lasting 10 to 30 seconds. The penobarb dose was increased from 36mg to 40mg a day. The seizures continued for three days, the increase in penobarb seemed to have no effect. The doctor then added dilantin at 20mg a day. After two days the dilantin started to work and there have been no seizures for three days. We are not extremely happy about the amount of medicine needed to control the seizure activity and worry about the side effects long and short term. Our baby is now seven weeks old, is up to 11 pounds, doing all the things she is supposed to be, and seems to have no ill effects from the medicine at this point. Blood tests are being done every two weeks to check levels,cell counts, and liver functions. On Jan. 11th, we have a appointment at the CCF for a second opinion with Dr. Wyllie. Thanks again.  
Dear RCRUM:
Sorry to hear about the seizure break through.  It is worrisome about the medications, we worry alot about having to give them and the long-term outcome.  The use of both of these medications have been around for a very long time and the side effect to benefit ratio weighs very favorably to their use for seizure control.  The data is not crystal clear but most think that frequent early seizures are not good.  I also think it is a good idea to see Dr. Wyllie for a second opinion.  Not to put too much pressure on her but if my child had epilepsy I would travel anywhere by any method to have her opinion (don't mention that I said this).  Your little one will tell you how well she is doing.  As she gains weight, attains the developmental landmarks, interacts with you, etc. these things will lighten you heart and give you so much satisfaction as a parent.  Before I forget, please bring the seizure diary, medication dose, medication levels, and all information gathered thus far.  It will help her alot to see these things.  If you can bring the EEG it will also help.  If there was a MRI performed, bring the hard copy or film.  Best of luck.  Let us know how things turn out.
Sincerely,
CCF Neuro[P] MD, RPS