I will place the answers to each question below them so it will be easy
to put them together.
On 2/7/2011 9:02 AM, Janet Formichella wrote:
> My Questions:
> 1.. The Doctor said that he will probably not outgrow the seizures. (How does
> she know?) Doc says he has failed 3 medications and If you fail three you are
> likely to fail the rest. (Is this true?)
I is difficult to make a decision whether the seizures will be outgrown,
however the severitya dn type of seizures he is having is how they would
have come to this conclusion.
> 2. Does anyone have any neurological episodes like my son is currently having?
When I was having multiple severe complex partials a day I would throw
up, sometime smore then once a dy. It was AWEFUL because it would
strike in the most inconvenient place of course. Wlaking aorund
stumbling is a common complex partial thing.
> 3. Are they migraines or seizures? The doctor is now sure they are seizures
> but she was sure before that they were migraines.
The only way to determine this is an EEG, or long term EEG for more
monitoring. Ont his note, an EEG can only be used to confirm seizures,
but never to rule them out. It is possible to get a false negative EEG,
especially true with temporal lobe epilepsy. This is what caused me to
go undiagnosed for a year.
> 4. Has anyone had seizures that changed in the manner of their presentation
> over the years?
Seizures are a progressive thing. The more of them you have, and the
longer they continue without being contolled, the more of them you have,
and the more severe they become. The reason is because it becomes
easier for the misfiring electrical charges to travel through your
brain. Think of it like water running on dirt, even a little bit, the
trench it makes slowly gets bigger, making it easier for the water to
travel on that path.
> 5. Although right now I have no intention of cutting a hole in my son, What are
> the statistics for success with the VNS?
You need to ask for the VNS information pack. It includes everything
you need to know, even a DVD to watch about it. Your Dr. should be able
to get this for you.
> 6. Do you think these things are migraines or seizures?
I am not a Dr. so I can't say. Based on my experience with my seizures
and what you are descrbing, I'd guess seizures.
> 7. Has the presentation and symptoms of your seizures changed over the years?
They did.
> 8. What is the success rate of the VNS. The loiterature says that it "May"
> help. I would like to see some statistics that will make this an option due to
> high success rates.
Again, ask your Dr. to get you the VNS information pack form the company
that makes it.
> 9. Has anyone failed 3 or more drugs and been successful with future attempts
> to find the right medication
Unfortunately, this was not the case for me. However, my Dr. told me at
one point "you are an extreme case". I was till having 3-6 severe
complex partials a day even on 3 meds at once. I ended up having a
right temporal lobectomy. I still have about 1, not sever, a week.
> 10. Should I be going to another big city to find another doctor to
> consult?Thanks you - Jan
You need to look for an epileptologist. This a neurologist with a sub
specialty in epilepsy. If you go to the website fo the national
association of epilepsy centers, there is a search on there to find
epileptologists in your area. This is the site
http://www.naec-epilepsy.org/ Under the phone number for each one is
A "level" this tells you what level of care they provide for epilepsy.
numbered 1-4, a 4 means the center provides all available testing and
treatment, these are the most specialized and best ones. If you can
find one near you this is what I would do given your son has been
uncontrolled this long. They may require you get a referral form your
current neurologist.
I certainly hope you find some answers, and soon. I fyou have any other
questions, be sure to let us know
Kelly
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> If you can find a path with no obstacles, it probably doesn't lead anywhere.
> - Frank A. Clark
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