Trying to understand

[STACI'S MOM]

My daughter is 28 years old, she has had epilepsy for 10 years now. Starting when she was just about to deliver her first child. She is currently on three meds (Keppra, Lamictal, and Depakote) for ep and Prozac for her depression. She had ONE seizure on 02/18/2008 that lasted one hour and 5 minutes. They were headed for surgery if she hadn't come out of it. She was life flighted to a neuroscience center. I guess I just don't understand, what comes next. I'm afraid that one day my son-in-law is going to call to tell me she is dead. Can anyone explain brain surgery? My daughter is afraid she is going to be mental (her words). I told her she already has some brain damage from the numerous seizures. But she doesn't want to hear that either. I think she needs to some support from others that have this disabilty. Her husband is scared, her children are scared to leave her alone. Any help would be appreciated, from resources to support.

 

[speber]

Welcome Staci's Mom...

...I'm sorry to hear how much trouble she (and your WHOLE FAMILY!) are going through!

You've come to a good place for info...to vent...whatever you need.

Take a deep breath (all of you) and take it one moment at a time...it is best...really.

I'm going to see if I can find some good links for you...
be right back!

check out:
Sudep?
-and-
Alternative Epilepsy Treatments

Peace
Spencer
:rock:

 

[brain]

:hello:

Welcome to CWE!
And so sorry to hear all of this!

:rose: :rose: :rose:

There could be many factors involved,
and with her being air lifted to the
Neuroscience Center, they should be
able to be of further assistance and be
working on your daughter quickly!

I can totally sympathize with you 100%
and I fully understand brain damage,
SUDEP, and everything else pertaining
to it - the only thing is; I can't have
surgery. I do pray that they will be
able to perform surgery and that your
daughter will have a much better future
and light than I do.

There's HOPE ... don't give up!

I understand your fears, worries, and
extreme concerns. Try to think in your
mind that your daughter's going to
pull this through!

As for brain surgery, we have some
members who frequent the board who
have had brain surgery and are doing
exceptionally well. In fact brain surgery
may be of great benefit for your own
daughter, I hope and pray; where she
may end up with no more seizures or
a huge reduction in medications and
seizures altogether where you and your
family can breathe easier at nights!

There's HOPE!

You can always check up on the
Resources on CWE and click on the
Epilepsy Foundation Logo on my
Signature Line if you need assistance
and support right away ....

 

[Bernard]

Hi Staci's Mom, welcome to the forum. :hello:

My daughter is 28 years old, she has had epilepsy for 10 years now. Starting when she was just about to deliver her first child.

My wife (also a Stacy) has had increasingly severe seizure activity with each pregnancy. There are a lot of women who report seizure activity changing (worsening) after pregnancy. I wonder if it is related to hormone changes or perhaps leptins.

She is currently on three meds (Keppra, Lamictal, and Depakote) for ep and Prozac for her depression. ... I told her she already has some brain damage from the numerous seizures.

Don't be so sure about that. My wife was a walking vegetable when she was on Depakote. As soon as she got off of it (and got her seizures mostly under control), her cognitive functions returned to normal. Impaired mental function can be a temporary effect of both seizures and AEDs and can last several months.

I think she needs to some support from others that have this disabilty. Her husband is scared, her children are scared to leave her alone. Any help would be appreciated, from resources to support.

She and her husband are very welcome to visit here! Fear can be mitigated with knowledge. We're here to help.

 

[BuckeyeFan]

Welcome

Welcome to our home. I have found this site to be quite helpful for both information and support. Please visit often. As stated above, the more information you have, the easier it is to deal with the fear.

Bernard, Speber, Birdy, Brain and all the others are great!!!

Please let the rest of the family know about the site. Even if they never make the first entry, just reading the various forums can be helpful.

:cheers:

 

[RobinN]

Welcome Staci's Mom
So sorry you are all going through this. How very scary. Please tell Staci that we are thinking about her. Also I am a mom of a daughter (16) who is continuing to have uncontrolled seizrues, and it is pretty darn hard to watch your loved one deal with all that comes with the package. Stay strong.

We welcome your whole family.

 

[STACI'S MOM]

Thank you for your support. I am just trying to understand all of this. My daughter didn't have a seizure disorder when she was growing up and this is extremely difficult to understand. I would really like to understand the surgery aspect of this. Since most of the medication doesn't seem to work. She has been to the Nueroscience Center several times. This last time they were giving her Depakote in her IV and her levels were dropping. Something about her body not accepting the meds. Does surgery leave you in a state of not being able to function? The meds seem too. She does not have any short term memory, is this the meds or is it just from having too many seizures? I am just completely frustrated.

 

[Bernard]

If the surgery is successful, there should be no mental impairment. Seizure control may be complete or nearly complete and may be permanent or just last a couple of years before seizure activity starts increasing again.

Many AEDs (anti-epileptic dugs) can cause mental fogginess/memory impairment.

I'd recommend looking at diets, neurobehavioral therapy of EEG neurofeedback if you aren't having any success with drugs. You can read more about them in the chart linked in my signature.

 

[skillefer]

Hi Staci's mom! Welcome to the forum. The people are really nice here and very informative. As for memory, seizure activity as well as AED's (meds) can cause or contribute to that. Mine is shot. Anyway, welcome. And feel free to ask any questions.

 

[Nancy]

Hello STACI'S MOM It's great that you found this forum during SUCH a difficult time. I sure know where you're coming from and a lot of how you feel ---- and how your daughter feels (but I don't have children so I can't evne imagine that).
I suddenly started having seizures in 1990 when I was 46 years old and it was AWFUL.

But the most important thing I want to say is ... I had lots of seizures and had no brain damage at all.
Then I had brain surgery in Feb., 2006, to remove a tumor that had started the seizures. I had more surgery in May, 2007 to (hopefully) stop the seizures forever. I have not had a seizure since then. My memory has some flaws but it is improving and the neuropsych, the neurosurgeon, the neuro, everyone working on/with me promises that will return completely.
Even my hair has returned
I'm a great fan of this brain surgery ...... I've been through it twice and would do it again.

Best wishes for you and your daughter.

 

[Georgiagirl88]

Hi Staci's Mom,

I don't have any medical answers, I am learning myself. I just wanted to send some support your way and wish your daughter well. I will say some prayers that she improves and her doctors are able to help her. One good tip I guess...I know they told me no tub baths. I wish you all well and help finding answers and good communication! I know it must be really hard on you too...just worrying about her. Take care!

Michelle

 

[alivenwell]

I hope your daughter finds the right answers. I've had epilepsy practically all of my life and I hold several college degrees. Good luck!

 

[Bernard]

... When her husband found her she was underwater, however he was able to get her out of the tub and onto the floor. She was coughing throughout the 30 minute long seizure. ...

She needs to get to a hospital to check for fluid in her lungs. It sounds like she likely aspirated and if she doesn't get proper attention pronto, she will be at risk for a serious case of pneumonia. My :twocents:

 

[skillefer]

Hmmm...has your daughter considered getting a service dog? They're usually trained to either get help, or stay with a person during a seizure. Some can even warn the person before the seizure so that they can get to a safe place.

 

[RobinN]

Everything is going to be okay, she and her husband will just need to rearrange their life to fit this challenge in. They will learn ways to enjoy the good times and get through the difficult ones. I am so glad that he was around when she was bathing. Baths certainly are not wise unless absolutely necessary. i am sure they have now learned that lesson, and it is a good reminder for all of us.

It must be hard to be so far away from your daughter. However, she is cared for by someone else now, and you can offer them both your prayers.