Re: My Daughter's problem

Posted By CCF NEUROLOGY MD/in on April 26, 1998 at 18:45:37:

In Reply to: My Daughter's problem posted by Stephanie's Dad on April 26, 1998 at 14:11:02:






My 13 years old Daughter as an apparently unusual problem. She has had this problem since age 6. It starts with an aura, which is a "burning"  feeling in her larynx region, it is usually followed by violent vomitting. Within 10 minutes she can not resond or talk intellgently. She also can not walk and her eyes are deviated to the left side of her head.  Within a half hour she is having a seizure that involves the left side of her body i.e. eyelid and eyebrow rapid twitching and mouth/cheek twitching.  Usually it proceeds to include mostly the entire left side of her body.
She has been diagnosed over the years with seizures, cyclic vomitting syndrome, basilar migraines (which may start the entire episode), and basilar migraines with seizure complications.  The entire episode can and usually last 3 to 4 hours and require obvious medical care.  She has had metalbolic tests, spinal taps, blood test, numerous eeg's and two MRI's without much progress as to the cause of this problem.  This spells are also predictable and are closer together. Originally they were 2 years apart then 6 months, 10 weeks, 5 weeks and now we are back to 10 or 11 weeks.
She has be treated with dilantin in her younger years, propanaol for the supposed basilar migraines, neurontin for about 11 months for the seizures and now she is being treated with Tegatrol for about 2 months. Yet, these spells persist.  The medication seems to help for a while, then she has an other one.  We have seen three neurologist here in central Ohio, but we are frustrated at the lack of answers or effective treatment.  The episode in February of this year was video taped by myself for possible us in a proper diagnoses.
Can you advise us where or who we can contact that may have some experience with this complicated situation?




Dear Stephanie's dad:
Your daughter's problems are little bit more complicated than usual. But based on the information you provided, I think that she has focal epilepsy. The presence of  the left side of body manifestations point to a possible origin of the seizures  in her right side of the brain (though this is not always a reliable sign). The duration of her spells are little longer than the average typical seizure, but this does not rule out this possibility.
EEGs may be normal if they are recorded when the patient has no seizure, therefore the fact that your daughter's EEGs have been normal does not rule out the diagnosis of Epilepsy. The best way to diagnose and to localize the origin of these seizures in the brain is record one (or more) of them on EEG. That is what is called Video-EEG recording.
I would strongly suggest that you make an appointment with one of our Pediatric Epileptologists here at The Cleveland Clinic who have very large experience in dealing with this type of problems. You may do that by calling 1-800-CCF CARE or 216-444-5559 and ask for an appointment with Pediatric Epilepsy Specialist.
Remember to bring with you all the record including previous EEGs, MRIs and the video of your daughter's seizure.
I hope that this information is helpful
Good Luck