How do we find the right doctor?

[talkdoc123]

First, please let me apologize for the rambling and length of this post.  We've been a pretty healthy bunch, overall, and I'm finding it difficult to navigate the medical arena.

My 20 year old son has had two episode in roughly the last year and is being diagnosed with a seizure disorder.  Last  April 17th, he sat down to a computer mid-morning in college, and turned on the computer.  The next thing he knew he was in an ambulance, with no recollection of the transition.  At the time, he had not eaten and was drinking a non-caffinated soda (not the diet variety).  The hospital ran an EKG and a CAT scan and told him they could not find a cause.  We brought him home where our family practitioner did an exam and put him on a heart monitor for a couple of days.  All tests results were wnl and he claimed to feel fine.  Last Monday (March 24) he had a similar episode mid-afternoon while at a friends house. He had been on her computer and was drinking the same soft drink (he usually drinks water, or so he says, he IS in college).  He doesn't remember much about the incident, although he does remember the transfer into the ambulance.  His friend (not the most reliable reporter, I'm afraid) said that he complained of not feeling well and his hand jerked a couple of times as he held the computer mouse.   He does not remember having anything to eat prior to that, although he did eat the day before (at home, on Easter). I talked to him at the hospital about three minutes after he arrived, he appeared to be tired and cranky, but not disoriented at that time. On the ride home he complained of being a bit "fuzzy", though he could answer current event questions (and it was 2:00 a.m. and I can't say he's real great with current events on a good day).   A MRI and EEG were run about 24 hours post incident, with results wnl.

His father and I are told that EEG's don't always test positive, even with seizure.  The neurologist (who I think is quite good) isn't accepting new patients until June.

My question:  what to do?  Do we find another neurologist, and how does one go about doing that on short notice?  Do we start him on medication, even without a definitive diagnosis (do you always get a definitive diagnosis?)?  He has not driven since last Monday, and while we certainly certainly understand that this is the safest measure for him and others, how will we be able to measure efficacy of treatment with undiagnosed seizures a year apart?  It was recommended by a colleague (School Psych) that he have a sleep-induced EEG.  What do you think?  I'm reading on this forum that meds can CAUSE seizures.  Is taking the wrong action a risk?

As a Speech-Language Pathologist (working in a public school, however, I don't claim to have top-notch clinical skills after eight years) I have rudimentary knowledge of the anatomy and brain function.  I have access to more.  We have decent insurance, and because he is a student, he is not limited by networks, etc.  We live in Western PA.

This tired and scared mother is most appreciative of your time and expertise.

[Lee9709]

After meeting the cardiologist and we discussed his seizures, he stated that it could be several disorders,  arrthynias, heat defects, cardiomyopathy, but with the history of migrains at an earlier age with exercise, getting hot, he suspected it might be this and that a tilt table test was reproduce the same effect and it did. He also did EKG,ECHO, Holter monitor for 24 hrs. As I understand about what I've read high blood preasure, then as it dramatically drops can cause this syncope also.  It may be worth a test, because if you look on the net,( Neurocardiogenic Syncope with seizures) you will find that neurological events are well suported, and that NCS is misdiagnoised as epilepsy.  I'v even read one site that stated a person  because of pos EEG was felt to have Epilepsy, but did have a pos tilt table test also, and so was treated for NCS as well, and he had no more seizures after treatment for NCS.  I am begining to believe that maybe this is a new horizon for epileptics, maybe this is a cause for seizures....... Thanks

[ChloeS]

Did the cardiologist automatically include the tilt table study in his/her work-up?  My 15-yr. old son was diagnosed with idiopathic generalized ep 3 yrs. ago and has been controlled on Depakote ER - seizure-free for 3 yrs.  He recently had a cardiac work-up due to high blood pressure.  The cardiologist did lots of tests, but tilt table wasn't one of them.  All other tests came out normal.
Thanks,
Chloe

[Lee9709]

Explore on the net Neurocardiogenic Syncope and tilt table study can help confirm this.  Your cardiologist could do this test while you are waiting for the neurologist app.  Any one that has fainting or seizure should have both complete work-ups, as I've read.   It is an Autonomic nervous system disorder, and the info is correct that their are people mis diagniosed with epilepsy.Our 15 year old son has been treated for 2 years for epilepsy uncontrolled and after we requested a cardiac work up from our peditrician, because of what info I had learned off the net, we have discovered this and will be changing his meds soon.

[ChloeS]

Hopefully, the doctor on this forum will answer you soon.  In the meantime, yes, I would try to find another neurologist who specializes in epilepsy.  You can google the Epilepsy Foundation of America for a listing in your area.  You gave a lot of good info. in your posting, which would be helpful for the doctor.  You may want to write it all down so you don't forget any details - the jerking movements of his hand on the mouse, sitting at the computer when it happened each time, etc.  MRIs often don't show anything.  A sleep-DEPRIVED EEG is more likely to show any abnormal activity, because lack of sleep lowers the seizure threshhold, but can still show nothing, unless some seizure activity occurs during the MRI.  You do not always obtain a definitive diagnosis.  My son (now 15) had his first seizure while at the computer 3 yrs. ago.  His first EEG and a 5-day video EEG showed nothing.  By my description of the 1st two seizures, the doctor diagnosed him with benign Rolandic epilepsy and started him on Trileptal.  This type of epilepsy (general term for 2 or more seizures) usually responds quickly and completely to this medication.  Unfortunately, that was not the correct diagnosis.  He had 4 more seizures before something showed up on the EEG, which enabled the doctor to make a more accurate diagnosis, determining that he has generalized seizures (involving the whole brain), rather than partial seizures.  Beyond this, though, he has been unable to make a definitive diagnosis.  My son has since been completely controlled on medication (Depakote ER) for 3 years.  Now the doctor wants to try weaning him off the medication to see if he's outgrown the seizures.  I hope you can find a neurologist/epileptologist who can see your son soon.  It sounds like your son may have a roommate.  It would be comforting knowing that your son is not alone very often.  As for driving, it would be better if he didn't, at least until he sees a neurologist.  Most states have laws requiring a person to be seizure-free for 6 mths.-1 yr. before driving.  Some meds list seizures as a possible side-effect, in a long list of possible side-effects.  Has he taken any new medications recently?  I'm not sure what you mean by "is taking the wrong action a risk."  If the doctor does decide to try putting him on medication, the process can be somewhat trial and error for a period of time, until they find the right med and dosage.  I hope that you get some answers soon.  I know how stressful and traumatic this process is.
Sincerely,
Chloe