Outgrowing seizures?

[KatieDee]

Dear Doctor:

I have an 8 yr. old son who has been diagnosed with complex partial seizures (and Tourettes) since the age of 6.  We've been to three neuros (every time insurance changes) and I've asked the same question to each about what are his chances of outgrowing the epilepsy and have naturally received different explanations.  I know neurology is not an exact science and I applaud the doctors who specialize in the study of the brain as it would seem to be the most complex organ in our bodies.  Having said that, I am curious to know your experience on children outgrowing their seizures when there is no known etiology.  He has very classic temporal lobe seizures (funny feeling in stomach, look of fear, flushing and sweating, mouth movements then unresponsive for a couple of minutes and then going to sleep).  They are infrequent, about every three months, but do cluster when they occur.  Seizure control remains questionable as he's changed AED's a few times due to severe behavior problems while on some of them.  I've been told that these kind of seizures usually are intractable or either told that since there is no known origin he stands a 75% of outgrowing them.  What is your experience?

Thank You.

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

Your son's seizures certainly do sound like temporal lobe seizures.  Unfortunately, both the CCF experience and that of the literature show a low spontaneous remission rate for temporal lobe epilepsy specifically of about 10-18% (meaning up to 90% of patients will not "grow out of it.")  The 75% remission rate you mention is from an Italian study that looked at the recurrence rate for people who had only one seizure with a normal workup and exam which turned out to be 25% at 2 years.

Have you ever considered taking your son to an epilepsy specialty center such as the Cleveland Clinic which is actually world-renowned for their work in epilepsy and epilepsy surgery?  The work up includes a very specialized MRI, PET scan, and continuous video-EEG monitoring. This can help establish the etiology for your son's epilepsy such as a small tumor, hippocampal sclerosis from a possible seizure in infancy with a fever, or birth injury.  If your son really has temporal lobe epilepsy coming from only one side of the brain, then he has a great chance of dramatically reducing his seizure rate with removal of the abnormal brain tissue. Of course, if you and your family do not want surgery right now (or ever), management by an epilepsy center would still be beneficial to your son. Think about it. Good luck to both of you.

[jan]

Katiedee, Are you aware of the yahoo support clubs for epilepsy? Maybe you can post there to get some info or check out their links. There are many, but here are 2 to start you off with:

http://clubs.yahoo.com/clubs/epilepsysupportgroup

http://clubs.yahoo.com/clubs/epilepsychat

Hope this helps. :o)

[CHADDY]

I have had seizures since I was a child, about 7 or 8 y/o and these support groups are wonderful!  They will be a place of a lot of support and you can find a lot of experiences and how the parents and patients have handled their situations.  Thought I would put a plug in there for them!  8-)  
Also...Thank You to the doctors of this forum, your advice and help are beyond wonderful!
chaddy

[jan]

katiedee, I was sorry to read the dr.'s response for your son's sake and mine. I was just diagnosed with temporal lope epilepsy this year at the age of 44. In researching it I had read conflicting info, too, so I was anxiously awaiting the dr.'s reply.
I did have an MRI, in fact 2 and will have a 3rd next week. It showed an area of abnormality and that same area showed sharps, spikes, and focal slowing on video/eeg. I am still hoping for the best, that is to have "remission". I just read in an epilepsy book that epilepsy is not a life long condition. I read in another about kindling and the possibility that if the brain can learn seizures, it may be able to unlearn it with medications. ???
Good luck to you and your son.

[Lab-R-4-me]

When I was 16 I had a bad seiazure at school and they thought I wouldn't have one again.  Many years later I had another, which was followed by more in my life.  I have Mesial Temporal Lobe Screlosis.  It is very unlikely it will go away.  My sister had  a seizure at 16 and at age 23 she has not had another.  Each case is different, but I would stay on meds until he was seizure free for 2 years and think about keeping him as healthy as you can.  His quality of life will be more important that him ever outgrowing them.  He also needs to learn he is like everyone else regardless.  I've travel overseas numerous times no problem, did well in school and have a great social life.  But within the past 3 months I've been to the emergency room 3 times.  So even if it doesn't go away, his life will be OK.  The sites below are good.  It wasn't until this year they could find anything wrong with my brain (I'm 30) and I've even spent the week being monitored.. so if they found something it might (might not) be his forever.

http://www.emedicine.com/NEURO/topic365.htm
http://www.emedicine.com/NEURO/topic365.htm

Best of luck!

[KatieDee]

Just wanted to thank everyone for their responses.  My son has had numerous EEGs, including inpatient video monitoring and outpatient ones as well as a couple of MRIs.  We were told all his EEGs have been very abnormal with non-stop spikes and waves.  MRIs have shown only incidental findings (subarachnoid cyst, gliosis, dilated Virchow-Robin spaces...) and nothing that would cause his seizures. It's not the seizures that affect his quality of living, but the effects of the medication and probably more so the co-existence of the Tourettes with OCD, which his OCD is by far worse to live with than seizures.  He can definitely live with the seizures, but sometimes when I stop to try to look at the bigger picture I wonder if the maturing process will change all that, if the imbalance of chemicals in the brain that's causing his conditions will somehow become balanced and he can start to enjoy life again.  Right now life for him is complicated, even though he is being treated by a neuro and a psychiatrist.  I participate in Child Epilepsy and Tourettes forums and understand that he is not alone.  I have found a lot of comfort and support in them and also recognize that things could be so much worse.  It breaks my heart to read about children with life-threatening and debilitating illnesses, but it does keep me humble when I think about my own son.  However, I do have hope that one day he will "outgrow" the seizures and that will be one less condition and medication he has to put up with.  I can accept whatever the Lord has planned for him, but like most people, find myself trying to predict the future.  Thanks again to the doctor and everyone else for the suggestions and feedback!