Millie,
Exactly- what are they waiting for...lol! They have nothing to compare this tumor to, and think it may be a malformation of the brain that has slowly grown since birth. They have no idea how fast it may grow, or if it will continue to grow. The second reason, is that to operate on the tumor only has a 35% survival rate. The tumor is in the midline along the frontal lobes with intrusion of the corpus callosum (center of the brain).
His seizures are definitely related to the tumor, but his neurologist and neurosurgeon are sure that a wait and see attitude is best in this case. So, we have to wait until July 29 for the results. At this time he will see 3 different doctors at the brain tumor clinic at Children's Hospital in Milwaukee, WI. This is a very long time to wait when we are talking about the lives of our children.
I have been an emotional mess, but try to stay strong during the day for the rest of my family! You are so correct, I have learned so much in the past two months, and I am always eager to learn more. So if there is anything else you would like to share- that would mean so much to me!
Thank you,
Susan
--- On Tue, 6/30/09, mylmy@bnin.net <mylmy@bnin.net> wrote:
From: mylmy@bnin.net <mylmy@bnin.net>
Subject: Re: [epilepsy] Breakthrough Seizures
To: epilepsy@yahoogroup
Date: Tuesday, June 30, 2009, 10:01 PM
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@bnin.net> wrote:
>
>
> From: mylmy@bnin.net <mylmy@bnin.net>
> Subject: Re: [epilepsy] Breakthrough Seizures
> To: epilepsy@yahoogroup s.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
>>
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