6 yr. old not responding to medications

[Dee]

Dear Dr. RPS:

Thank you for all the input you’ve given me on how to best treat my son.  The last posting indicated you remembered his history, so even though I won’t go into it, I really don’t expect you to still remember.  He was weaned off Tegretol and his beautiful personality returned and incontinence basically ceased.  Sans Tegretol there were indications that he was still having everyday occurrences of “dribbling” for a lack of a better word.  He continued to display frequent seizures (staring and unresponsive) after a month so he was tried on Depakote.  The second day after starting the medication he began to lose all bladder control, several times a day, every day that he was on Depakote.   He became VERY angry and aggressive and once the medication had reached the prescribed dose of 125 mg. q.i.d. he was physically aggressive with his anger.  He was weaned off the Depakote, after only three weeks on, and the first day he had no medication there was no incontinence.  He was still slightly angry, but improved.  The second day off, the school called and said he was not responding to the teacher all day and once he walked up to an adult stranger and held their hand (something he would NEVER do) kept rubbing his stomach, but couldn’t speak.  The teacher noticed this and spoke to him and then noticed his eyes had rolled back up in his head.  All day he had been having stomach pain and a headache.  He went to the school nurse and laid down and went to sleep.  She said during his sleep his eyelids were fluttering and he was jerking at various times in all his limbs.   Was this a complex partial seizure that was lasting several hours or was it just a long post-ictal state?  All last week his rages were like none I have ever experienced.  He became so volatile and it was frightening being attacked by a six year old.  

While a visit with a urologist confirmed his loss of bladder control was related to the medications, I was surprised when he had two more episodes while off any medication.  Every day since his last seizure at school he has complained of stomach pain, which was something that always presented itself just before a very pronounced event or immediately after.  However, the area of the pain is in his chest.  It brings him to tears and appears to be a gripping pain.  His PCP did an X-ray which was normal.  He said it was gastritis and gave him Zantac.  He also started Dilantin 50 mg. chewables.  Since he’s been on the Dilantin for five days now (I’m still just giving only one a day), his daytime incontinence has become as bad as ever.  He doesn’t have nighttime problems, other than nightmares.  Today he wet his pants three times and it appeared to be total loss of control.  Some days his pants are wet because he continues to dribble after going to the bathroom.  I can best describe it by saying his incontinence is always there to some degree, but with anti-seizure medications he has next to no control.  I don’t understand it.  But now with his chest pain, I’m even more worried.  He has pain before he eats, after he eats, when he wakes up, when he goes to the bathroom – there is no pattern.  He doesn’t say he feels like he’s going to throw up, he just starts crying and saying, “Ow, it hurts.”  I feel likes things have gone from bad to worse since his diagnosis in July, but his symptoms started in April.  It’s a long story and it involves the proverbial red tape with the insurance, but we do not have a specific neuro. for him.  The medication he’s been getting has been prescribed by a neuro that is out-of-network, but I trust completely.  However, she would like to repeat the MRI and possibly do another video EEG, but unless we are willing to pay out of pocket, we are holding off until we hear if Mr. Insurance will approve the non-par request.  Even though we took him to the ER at the request of his PCP after the incident at school, the neuro on-call refused to see him or treat him since he had been under the care of someone else who was not on staff.  We went to them because they were in network.

Do children typically have these kinds of side effects when trying to find a medication that will work?  He started off with just the jerking and twitching six months ago and now he has severe chest pain (esophagus?), incontinence, speech problems, possibly Tourettes, a short-term memory, change in personality and the complex partial seizures that were recorded at over 100 each day.  I will find out this week if the insurance will approve this neuro.  If not, we have to start all over.  I was told not to get my hopes up, so in anticipation of seeing a new doctor, is there anything else I should request in the way of treatment for my son or possibly different testing?  I am scared of the Dilantin and don’t want him to have to deal with gum overgrowth.  So what’s next on the list with a low incidence of side effects?  

Thank you again,

Dee

[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