6 yr. old not responding to medications

[Dee]

Dear Dr. RPS:

Thank you for all the input you

[CCF Neuro[P] MD, RPS]

Dear Dee:

Sorry about all the problems that your son is having.  I am not sure what to make out of the loss of bladder control except that your son's seizures are not being controlled.  The stomach pain is a known side effect of valproate (depakote, depakene).  The half-life of VPA likely explains the prolonged effect.  It would take several days to completely be metabolized.  The chest pain on dilantin is alittle worrisome.  For any medication to work one has to be at the therapeutic level, and although most of us will push the medication beyond the therapeutic level to achieve seizure reduction, we only do so until side effects occur.  By not giving the full dose, one doesn't know if dilantin is working or not.  So, when you talk to the neurologist he/she won't know if it worked or if it wasn't just non-therapeutic.  The chest pain may be from many things but since dilantin can affect the heart rate and conduction, I would discuss the chest pain with your physician.

Partial complex epilepsy is usually a difficult seizure type to control.  The usually medications of tegratol, or dilantin are the mainstays.  However, there are many new medications on the market that have worked well on complex partial epilepsy.  I would suggest that you only change medications under the supervision of a neurologist familar with epilepsy.  If the epileptic zone is very focal, your son might achieve seizure freedom from epilepsy surgery.  So, once things with the insurance company are resolved, I would seek out an epileptologist.  Epilepsy is a treatable condition in most cases and the better centers usually have the better results.

Sincerely,

CCF Neuro MD

[Dee]

Thank you so much for your reply.  I just received a call from the insurance and before they can approve the non-par request, the doctors there felt he needed a thorough evaluation at what they consider to be the best center in the Dallas-Fort Worth Metroplex, since he appears to be getting worse.  They are referring him to be seen by the pediatric neurology department at UT Southwestern Medical Center.  They are not in-network providers, so I feel the insurance company must have the best interest of my son in mind (which is not always the case I've found).  What they didn't realize is that the doctor I requested a referral to is in that department!  She's a pediatric neurologist and said she specializes in epilepsy.  Does that mean she's an epileptologist or is that something different?  I'll be increasing the Dilantin per the prescription until he's seen.  I just hope it doesn't cause the explosive rages.  Thank you for helping me keep my sanity.

Dee

[CCF Neuro[P] MD, RPS]

Dear Dee:

UT Southwestern is an excellent institution.  The head of pediatric neurology there is Stephan Roach.  The epilepsy attendings are very good and your son should be well taken care of there.  Not all pediatric neurologist who say they specialize in epilepsy are epileptologist.  However, if the person you will see says that she specializes in epilepsy at Children's at Southwestern, then I bet she is an epileptologist who is boarded in clinical electrophysiology.  

I wish you the best of luck with your son.  Hang-in there, epilepsy can be difficult for all involved.

Sincerely,

CCF Neuro MD