Concerned Mother

[Daisy]

Hi, I am new to this, but have a 20 year old daughter who has had epilepsy for a couple of years now, unfortunately she can be seizure free for up to 7 months then they start again, usually once she starts a new job, then has daily seizures, and cannot work, of course she cannot drive, and is reliant upon us for everthing, it is just so upsetting to see her like this, and I want to be able to help her more. A forum was suggested to me, so here I am.

 

[brain]

:hello: Daisy!

Welcome to CWE! And it sounds to me that
it's possible that there could be many things
that could be triggering seizures when your
daughter is working; such as lighting, computers,
etc - that flickers; stress, extreme heat/cold,
and other factors.

I am wondering if your daughter is working with
a Vocational Rehabilitation Program / Counselor?
He/She should be able to work with your daughter.
In addition if available in your area - Epilepsy
Foundation has services where your Daughter's
Neurologist / Epileptologist could refer her to
them for assistance; and if none available there
are often branches or Independent agencies
(local) that are often usually an outreach of
Hospital Organization(s).

But if you could send me a PM and let me know
what State you are in - I could obtain some
information to you directly if you are in the
United States or Canada. If you are International,
I have access to England/United Kingdom and
Australia and can provide you direct mainline
access information for you. There is HELP out
there; but sometimes one can be bewildered
as where to find it or obtain it.

Just click on my Photo and a menu will pop
down and click on the second one - "send
private message to brain" and I will try all
I can to assist you. It would help even more
if you're in the United States or Canada if
you could provide me the City and State or
Providence and District (Canada), so I can
provide you specifics.

Thanks!

And so sorry to hear the frustrations that
your daughter is undergoing ~ but there is
hope out there today; she's got a far better
chance than I did when I was her age.

Hang in there!

 

[Meetz1064]

Hi Daisy

Brain is an excellent source of information! Listen to her. Bernard, too. There are several others on here that are also VERY good sources of info.

When it comes to ep, KNOWLEDGE IS POWER (sorry, my personal mantra). Learn all you can. Ask as many questions as you can. Don't be embarassed. No question is too dumb....except the one that isn't asked. This is a wonderful place to start. We'll all help point you in the right direction....and answer questions, based on our own experiences which are so vastly different....some here are parents of little ones, some are parents of teens & olders, some of us are spouses, some of us are actually the ep patients. Don't worry, you'll fit right in.

Welcome!

Meetz

 

[RobinN]

Hi Daisy - My daughter Rebecca is 16 and has been having seizures for 1.5 yrs.
Sounds like the stress of a new situation is putting her over the edge. Stress can be a big trigger for many.

Have you ever looked into neurofeedback?

BTW welcome to CWE

 

[Bernard]

Hi Daisy, welcome to the forum. :hello:

Hi, I am new to this, but have a 20 year old daughter who has had epilepsy for a couple of years now, unfortunately she can be seizure free for up to 7 months then they start again,

Read a bit here in The Foyer and you will find people struggling with seizure patterns much worse than every 7 months. The long period in between (assuming there isn't absense or other "small" seizure activity occurring that you are not aware of) suggests to me that she has a fairly high seizure threshold. I would think that diet, CBT and/or EEG neurofeedback (see chart linked in my signature below for more info) might offer her excellent results.

... usually once she starts a new job, then has daily seizures, and cannot work, of course she cannot drive, and is reliant upon us for everthing, it is just so upsetting to see her like this, and I want to be able to help her more. A forum was suggested to me, so here I am.

It is upsetting. I don't have epilepsy - my wife does. I've been riding the wildest rollercoaster you can imagine over the last ~8 years or so.

Anyway, make yourself at home here. Feel free to ask questions or share experiences as you like.

 

[Birdbomb]

Welcome Daisy

Nice to meet you.

 

[alivenwell]

Welcome! There is hope for your daughter. In today's employment world, diversity is becoming a much more welcomed issue. Anybody who is different from the majority can offer a fresh perspective that resolves work related issues.

I finally landed a great job and kept it for 20 years. However, there are employment opportunities for her that she will need to find for herself. The challenge of epilepsy can be overwhelming. I think the many forms of epilepsy are what cause so many different reactions. People do not always know what to do about it unless they closely know the person with the epilepsy.

Please help her by finding the correct neurologist who can really help her control her epilepsy. For me, I find stress to be a really big factor, and I walk 2 miles every night with an active dog to fight that stress. I also love music and art. This sounds like it can become well controlled with the right treatment.

The most you can do is be her advocate. My parents were always there for me and I'll always be grateful for that.

 

[lisabdcat]

Hello Daisy
I have an almost 20 year old daughter who's had seizures for a few years now. She has gone as long as 11 months without one before they started up again. This time around we are at the 3 month mark without any. She too cannot work or drive and is quite dependant on us. She tried going to college out of state after high school but had trouble with seizures. She is going to try college again this fall closer to home. She has recently applied to work with Vocational Rehab to help her with college or work if college does not work out. Nothing's happened yet with them because there is a six month waiting list. She also has applied for and receives SSI. The hardest thing I find is letting her be independant as well as safe at the same time.

 

[alivenwell]

I'm not sure how the vocational rehab works in your area, but when I went to college, it would not have paid me to have a job. That income would have had an impact on reducing my tuition reimbursement. I can say that they do keep track of a grade point average. They would meet with me occasionally and review my grades. Anything below a C average would not have been covered. I kept a decent grade point average and was practically fully reimbursed. I did have a few seizures during some classes, and one test. The professor allowed me to come back and retake the test. I did not drink alcohol like many of my friends, I did not smoke and I pretty much studied really hard. I had many friends who were also handicapped for various reasons and they became some of my best friends.

After I graduated, I located housing that was near public transportation, a mall, several grocery stores, a neurologist and a regular MD. It allowed me to retain good medical advice, maintain an income without worrying about losing my license, and invest in a house which has drastically gone up in value. I now do a lot of shopping online. It's very convenient. I do not have to go out there and combat heavy traffic, poor weather conditions and any other driving hazards like the many idiots already on the road.

Technically, just a warning or aura can be considered a seizure. I think a lot of women tend to be more prone to the seizures during that time of the month (TOM), stress, trauma, illness, as well as a few other major factors. Because your daughter is young, please make sure she is placed on a medication that can be safe for an unborn fetus in the event she wants to become pregnant. Thoroughly research every medication that is suggested for her. They have all kinds of side effects.

During my first degree, I had a really bad roommate who kicked me out of the room many times. I think I slept a lot in the TV room or near the security guards for protection. Hopefully your daughter has a much better start. She might want a private room or off campus housing if it is walking distance.

Life is never dull with this condition!

 

[skillefer]

Hi Daisy! Welcome to the forum! There's alot of excellent information here.