Tim,
The neurosurgeon wants to wait and see because he said right now the risks far outweigh the benefits of doing the surgery. Right now my son is a bright, cheerful, active little boy and can do all the normal things an 8 year old should be doing. He went to a neuropsychologist for testing and did show some mild delays in the frontal lobe, executive functions, but they don't feel it is severe enough to perform surgery unless the tumor shows signs of growth.
One thing that bothers me is that they are certain by "looking" at the MRI films that the tumor is benign. I have faith in the medical doctors, BUT this is my child they are "experimenting" with!!!
I will take a look at the website you provided, and will keep everyone updated on his condition. Some days are better than others, but his behavior and seizures are just getting progressively worse.....which leads me to believe there are more complicaitons due to the brain tumor.
This whole process has been very frustrating, and all advice or information is so helpful!
Thank you,
Susan
--- On Tue, 6/30/09, Tim H <deacon500@gmail.
From: Tim H <deacon500@gmail.
Subject: Re: [epilepsy] Breakthrough Seizures
To: epilepsy@yahoogroup
Date: Tuesday, June 30, 2009, 10:11 PM
Susan,
I would vote with Millie on this one- why aren't they talking surgery?
Another organization you will fin helpful is:
American *Brain Tumor Association* <http://www.abta. org/>ABTA
helps people understand different types of *brain* tumors, symptoms, newest treatments, and caregiver & support resources.
I am a medical social worker and have made use of the American Brain Tumor
Assoc in the past. They are very helpful along the educational lines of geting a better understanding of the brain tumor problem.
-Tim Heller, MSW/LCSW
Dani's Dad
On Tue, Jun 30, 2009 at 10:01 PM, <mylmy@bnin.net> wrote:
>
>
> Susan,
>
> I don't know anything about brain tumors. What are they waiting for?
> Are they expecting to operate or that it will shrink or grow?
>
> I seems that if he is having szs -- they would be doing something.
> But like I say-- I don't know anything about tumors.
>
> When something like szs some into your life you do learn a lot fast.
>
> Millie
>
> > Millie,
> > I have been here for about a month, but do not get the chance to post
> > much. I have six beautiful children that range in ages from 11 to four
> > year old twins! I have five sons and one beautiful daughter! In March my
> 8
> > year old son had a seizure, and then 6 days later he had another. We
> > rushed him to the hospital because it was very scary, and the
> pediatrician
> > told us after the first seizure that is what we should do. At the local
> ER
> > they did a CT scan and found a brain tumor, he was immediately rushed to
> > Children's Hospital in Milwaukee. He had another CT and an MRI, plus they
> > started him on AED's.
> >
> > Since April he has had breakthrough seizures about every 14 days on the
> > dot. He gets a stomach, and that is the only pre-cursor we have to him
> > having a seizure. He has a repeat MRI on July 24 to determine if the
> tumor
> > has grown at all. He has been through so much in the last two months, it
> > is crazy how much your life can change in a matter of a few minutes.
> >
> > This group is great, and there is a lot of wonderful information here!
> > Thank you so much for the warm welcome!
> >
> > Susan
> >
> > --- On Tue, 6/30/09, mylmy@bnin.net <mylmy%40bnin. net> <mylmy@bnin.net<mylmy%40bnin. net>>
> wrote:
> >
> >
> > From: mylmy@bnin.net <mylmy%40bnin. net> <mylmy@bnin.net<mylmy%40bnin. net>
> >
> > Subject: Re: [epilepsy] Breakthrough Seizures
> > To: epilepsy@yahoogroup s.com <epilepsy%40yahoogr oups.com>
> > Date: Tuesday, June 30, 2009, 9:17 PM
> >
> >
> >
> >
> >
> >
> >
> >
> > susan,
> >
> > Not sure if you are new but if you are Welcome;
> >
> > I was 30 when I was dignosed (DX) with EP. I had 3 daughters,
> > 2, 4, and 6 plus a husband(ex now). That was 47 years ago.
> >
> > I have learned a lot in this group.
> >
> > Millie
> >
> >> Amanda,
> >> My son has epilepsy, and he is currently taking 775 mg of Depakote a
> >> day.
> >> He has breakthrough seizures about every two weeks, and they are also in
> >> his sleep. They have never lasted more than 3 minutes, but yes, they are
> >> very very scary! My son has complex partial seizures, and has had one
> >> petit mal about two weeks ago.
> >>
> >> He just had a 24 hour EEG which showed no under-lying seizure disorder
> >> in
> >> his sleep, but he seems to have a breakthrough seizure every 14 days. My
> >> son is 8, and was diagnosed in April with epilepsy and a brain tumor.
> >> Best
> >> of luck to you! Would love to talk more!
> >>
> >> Thank you,
> >> Susan
> >>
> >> --- On Tue, 6/30/09, Amanda Rainey <a_rainey121708@ yahoo.com> wrote:
> >>
> >>
> >> From: Amanda Rainey <a_rainey121708@ yahoo.com>
> >> Subject: [epilepsy] Breakthrough Seizures
> >> To: "epilepsy" <epilepsy@yahoogrou p s.com>
> >> Date: Tuesday, June 30, 2009, 8:39 PM
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >> Hi all,
> >>
> >> Just wondering if any of you have had a " breakthrough" seizure. My
> >> daughter had one on Saturday that sent her to the ER. Now they have her
> >> on
> >> her regular meds (Tegretol) 1tsp 2x a day and then a 1/2 tsp around 1400
> >> (2pm). It was a grand mal seizure in her sleep. I HATE those, they scare
> >> me so bad. If any of you have had these I would love to know. Thank you
> >>
> >> Amanda
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >>
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
> >
>
>
>
--
Visit My blog:
http://mensgrief. blogspot. com/
____________ _______
< ' )))><
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Grow up
Put away the God of childhood
Put aside the comfortable God
Put behind you the assurances of
things attained and live into the substance of things hoped for
Be militant
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Speak the truth
Live the faith
Live the faith without compromise."
-Archabbot Lambert Reilly, OSB
< ' )))><
"To the true servant of God every place is the right place and every time is
the right time."
- Catherine of Siena,
St. Catherine of Siena as Seen in Her Letters.
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