We see seizures at home,but eeg has only picked one up in two years

[Wesley's Mom]

Our ten year old son suffered from the California La Crosse Strain of encephalitis in Sept. of 2001. In the hospital he went through a waxing and waning,and would have febrile seizures,and would scream,and was in an altered state. Since he has come home,he has complex partial seizures,and has been on so many medications, we are currently weaning him from Trileptal 450 mgs. 2x's daily,he is also on Strattera 10 mgs.,and his neuro wants to put him on amitriptyline. His seizures have gotten progressively worse over the past two years,and he is now starting to shake, clench his fists,turns very pale,and his eyes also roll back in his head. The shaking is not hard though,but his whole body is affected and lasts only for one -three and a half minutes. Wesley also suffers from severe migraines after these seizures,and has basically been debilitated by all of this for two years. His eeg's have come back clear except for one,that is what stumps us! His neurologist thinks since Wesley's Parietal Lobe,and near his brain stem was affected by the encephalitis,that his seizures are deep in the Brain. Could this be the reason that the EEg is not picking these up,and it being hard to control these with medication??We have been on Depakote,Tegretol,Neurontin,elavil,Topomax (topamax),and so many other migraine medications. He also had chicken pox and chicken pox pneumonia , four months later so bad that the infectious disease specialist had not seen a worse case since the 1970's. Wesley has been through a lot,and We just want to help Wesley not to suffer anymore.Any suggestions?Mandy Myers

[CCF-Neuro-M.D.-CS]

If your son has a spell while an EEG is being recorded some change should be seen, but not absolute. However if the EEG's are being done when he is not having a seizure it is not uncommon for them to be normal. The EEG is used only to confirm the presence of abnormal brain activity. The best way to judge if a medication is working, is by monitoring his clinical response. Is the neurologist you are seeing an epilepsy specialist? If not it may be reasonable to see an epileptologist. Also, inpatient video/EEG monitoring is sometimes helpful to clarify the epileptic nature of these spells, and hopefully to localize where they are coming from. If you are in the area with have 4 excellent pediatric epilepsy doctors (Drs. Wyllie, Kotagal, Lachwanni, and Gupta). Lastly, if medicaitons continue to fail to control his seizures, then another option to evaluate is epilepsy surgery. Again, this could be investigated by seeing a epilepsy specialist. Good luck.

[Demiguise]

I'm adult & started having strange head problems. My EEG's were
normal. My only relief was anxiety meds to control un-diag. head
spasms. My rheumatologist said it sounds like I have spiking-
spasms. He said not all eeg's will show seizures, especially if
deep. We did a trial of Clonazepam .5 twice day. Used to calm the
brain firing. Well after 2 wks. adjustment, it's been a big help.
Now I need a Neuro. that believes me to fine-tune Rx. You must be
suffering watching your baby go through this.  Try this website:
"Seizures and Epilepsy: Hope Through Research" at Google. It
mentions MEG, a way of testing w/o electrodes. Maybe that would
work. I'm sure helps out there. Keep trying & good luck.

[jan]

It is true that not many EEG's can come back normal even when one has epilepsy.

This is a link to a forum for those with E, there is also a forum within the site for child neurology and there may even be another that might interest you.  

http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&number=33&SUBMIT=Go

To others: this site has many forums within it for diverse neuro problems.

http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi?action=intro&BypassCookie=true


I hope this helps you.

[Wesley's Mom]

If We have already had an MRS which showed some differences near Wesley's brainstem,but nothing significant,to tell us where the seizures may be coming from. Would the next step be to try MEG? or Surgical electrode placement? Our neuro thinks Wesley's seizures are deep in the brain. Many EEG's including 24hr video,will have an ambulatory at home on Oct 29, I hope it shows something!Wesley's mom

[jan]

Sheesh, I came back today to the forum and check out this link again.  I don't know what I was thinking when I typed my 1st sentence, but it was supposed to be that EEG's can come back normal even if one has epilepsy.  Fortunately, others told you that.  I am sorry for the mistake.
If the seizures are deep in the brain that would be a good reason for the EEG not to pick it up.
I agree with the CCF neuro, if you're not seeing epileptologist now, then do so.