Benign Epilepsy

[Edysdad]

My son has recently been diagnosed as having a Benign Epilepsy
disorder. It has been explained to us that he has been having seizures
in his sleep that do not manifest themselves as a physical seizure. We
have been trying to get a better understanding of what is going on with
him and what we can expect in the future. If anyone could guide us to a
good site or source that is written for the laymen, we would greatly
appreciate the help.

Thanks,

Ed

[richard farmer]

Edysdad <Edysd...@aol.com> wrote:

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[EPILEP...@aol.com]

Hello Ed -

 

I am so sorry to hear about your son.   I hope they can find a way to control his seizures, there are so many choices to choose from today. I had epilepsy since I was 8 months old from a high fever.  Due to technology, or lack there of,  it took doctors and numerous types of tests 22 years to diagnose me.  I went through numerous medications, as well as drug cocktails, nothing really helped. 

 

When they diagnosed me, my seizures were controlled for 10 months. At that point, I researched other options.  I went through numerous tests to be a candidate for surgery (not everyone is a candidate) which I had in 1994, and since then, I had 3 seizures.  

 

Today, there are other options out there, Ketogenic Diet, specialized Atkin's Diet, yoga, alternative treatments, as well as other forms of surgery, VNS (Vegal Nerve Stimulator), etc, and several others.

 

As for where you can go online for more information:

 

The website I find the most helpful, especially in 'layman's' terms is www.epilepsy.com .  Another one is the Epilepsy Foundation www.EFA.org    Both have message boards as well as chat rooms.

 

Another option is to join more active groups online geared towards parents of children with epilepsy.  There are three active groups on Yahoo:

http://health.groups.yahoo.com/group/childhoodepilepsy/

http://health.groups.yahoo.com/group/epilepsy-kids/

http://health.groups.yahoo.com/group/parents-of-kids-with-epilepsy

 

on MSN:

http://groups.msn.com/ForParentsofChildrenwithEpilepsy/general.msnw

 

Also, my friend has a chatroom on AOL on Wednesday's 7-10EST EPILEPSY CHAT I

as well as on Yahoo on Saturday's 7-10EST.  http://groups.yahoo.com/group/EpilepsySurgeryGroup1

 

A website to post your childs story and keep it updated, and read others:

http://www.kidsepilepsy.com/default.htm

 

If there is anything else I can help you with, please don't hesitate to ask via email or IM.  I have several email addresses you can use, EPILEP...@aol.com, epileps...@yahoo.com epilep...@gmail.com epilep...@msn.com and epleps...@cox.net.

 

I hope you can find the information you are looking for in the above sites. 

 

Best wishes -

 

Jody

 

 

 

[Joy Gangadharan]

Hi Jody,

I have been suffering from epilepsy for the past 22 years and am still relying on the drug cocktails whih are bound to change with every visit to the neurologist. These cocktails have done me more harm than good. Controlling the seizures seems to be the focus of the neuro's. The side effects, they claim is part of the package. After all permutations and combinations, today I am forced to rely on anti-depressants as well. I am totally governed by these drugs and with every new combination in drugs, a new avatar pops-up in me. Surprisingly, I am not a candidate for surgery or VNS.

Could you please mention the various tests u have undergone before surgery. Moreover what are the chances for a seizure free (almost); life after surgey.

Your mail to Ed was really encouraging. You seem well informed about this dreaded disease. Is there any method of early diagnosis for any form of seizure in toddlers?

looking forward to your reply.

--Joy 

[EPILEP...@aol.com]

 

Hello Joy -

 

I am sorry you are having so much trouble finding the right medications to control your seizures, with minimum side effects.  Although most neurologists philosophy is to control your seizures, there are many reasons which effect their treatment. Some are interested in helping the patient to the best they can, regardless of the treatment, and some are more interested in themselves, their ego and their pocket (patient fees, as well as rebates with the drug companies.)

 

Other things which the type of treatment depends on are age, school (studies, intern and residency) profession, philosophy, attitude, year of graduation, area of practice, alternate forms of treatment. 

>>Age - the younger doctors know more of the current forms of tests and meds, surgery, and alternate treatments.

>>School - Ivy league school have the best professors, teaching from experience, knowledge and up-to-date with the form of treatments.

>>Profession -  Are they a general neurologist, do they have a specialty in an specific neurological treatment.  An epileptologist is a neurologist who takes 1-3 extra years in school to specialize in epilepsy, and only treat those with epilepsy.

>>Philosophy - Do we treat the patient or do we treat the disease.

>>Alternate Treatments - there are several alternative forms of treatment, depending trigger point for seizures, and type for seizures.  As with the meds, none are a guarantee.  Some alternative treatments are diet (Ketogenic Diet, altered Atkin's Diet) herbs, vitamins, yoga, for women with catamenial seizures (seizures brought on hormonal changes through the month) they use meds to cease the menses, etc.

 

As far as being a candidate for surgery, brain, VNS, gamma, RNS, again, depends on all the topics mentioned above.  To be properly diagnosed and treated if to go to a Comprehensive Epilepsy Center.  There are many tests they do, depending on what each tests provides them, depends on the next test they order to get to point of being a candidate. Not everyone is a candidate for surgery, and many who are a candidate, elect to not use that as a form of treatment. Some of the tests are EEG, VEEG, Long Term Monitoring, MRI, CT, Spect, PET, fMRI, WADA, Grids, Strips.  There are also just as many types of surgery as there are tests listed above.

 

My first recommendation would to be treated by an epileptologist in a Comprehensive Epilepsy Center with an open mind in forms of treatment.  Work with them, they will most likely start all over with forms of treatment to see how you react, this isn't to line their pockets, depending on what tests you had and how long ago, things can change, focal area, types of seizures, etc.

 

As for early diagnosis for children, as soon as you notice something unusual, bring them to a doctor who specializes in what you suspect it to be, The sooner you bring them to a doctor for proper testing and treatment, the sooner you get a result and treatment.  It is possibly for epilepsy to be hereditary.

 

I am sorry all this has brought you to the point that you need anti-depressants.  This may or may not be a result of the treatment you are getting, it is also brought on by the reason for the seizures, focal area(s), brain damage, scar tissue, acceptance, side effects of meds, society, etc. Since childhood, I have had bouts of depression but never had to resort to anti-depressants.  I was always able to notice it and snap out of it. 

 

I hope I answered all your questions, if you have any more, please do not hesitate to ask, either here in the message board, or privately.  My email addresses are EPILEP...@aol.com, epilep...@msn.com, epilep...@cox.net, epilep...@gmail.com, epileps...@yahoo.com.

 

Best Wishes - - -

Jody

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