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Old 04-26-2008, 10:27 PM
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Unhappy son newly diagnosed with epilepsy


Hi Everyone - I am new to this site and not an experienced poster, but this seems great. My 21 year old perfectly healthy son has been in the Navy for 2 years - went on a submarine for 4 months and started having seizures. He has since been diagnosed with epilepsy and is receiving a medical discharge. He planned on making the Navy his career so it has been just devastating for all of us. He has small "spacing out" seizures. He's currently taking 2 medications - can't remember what right now - 10 pills a day. And it's not always effective so he's not able to drive, which is very distressing to him. He's 3000 miles away so we haven't been able to help him at all. The past 3 months have been like a nightmare. These forums seem great - I'll keep reading. Wanted to say hi.
Navymom
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Old 04-26-2008, 10:59 PM
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Welcome to the forum!

Hopefully your son will learn how to work around the system and find the right doctor, right meds, right care and support to overcome epilepsy. It's possible. The lack of driving is a bummer. I now drive for close to 10 years with complete seizure control.

For me, stress was always a factor. It seems like I really got a grip on this disorder when I obtained an active, smart and rowdy dog. We take a stress-busting brisk walk every night and we play pretty hard. We had a really hard rain tonight, but we still went out there for the walk. She was wet and wild when we got home.


Please keep us posted on your son's progress. Hopefully he's seeing a neurologist who specializes in this disorder.

Best wishes for your son's health and welcome!

Last edited by alivenwell; 04-26-2008 at 11:04 PM.
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Old 04-27-2008, 05:23 AM
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Navymom!

Welcome to CWE! Sorry to hear about
the issues and distance with your
son being so far away, but on 2 meds
being 10 pills?
WOW!

But a good place to start would be
reading up on:

Epilepsy 101

And feel free to browse around!
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Old 04-27-2008, 11:25 AM
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Hi Navymom, welcome to the forum.

My wife completely eliminated her absence seizures (small "spacing out" seizures) with ~5-6 months of EEG neurofeedback. I highly recommend looking into it.
__________________
New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

Would you like to help support this forum?
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Old 04-27-2008, 07:40 PM
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Thank you so much for your replies! Your experiences are encouraging. My son just said to me tonight that his greatest fear is to be 30 years old and still living at home because he won't be able to drive or hold a job.
I just want him to come home where we can have him evaluated and start over. His Navy dr. has not tried any other medications and my son is not really being very closely monitored. Makes me nervous when I read about the suicidal tendencies from certain drugs. I am so glad I discovered this forum!

Navymom
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Old 04-29-2008, 11:14 AM
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Hi Navymom! I understand his fear...after all, this is all new to him and you. Take comfort in the knowledge that many of us live on our own, have jobs, have degrees, and even drive. If his doctor isn't monitoring him, and he's still seizing, he should look for another doctor. As for meds. They work differently for different people. But they can work great at controlling seizures for some people. It's a matter of finding the right one or combo. And that is all a matter of trial and error. In the meantime, try not to stress. Think of it like asthma or diabetes. Now that he knows he has it, it's a matter of trying to get control over it. And that's a matter of educating himself and advocating for himself at the doctor's office.
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Old 04-29-2008, 09:53 PM
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I totally agree!

He definitely needs to have bloodwork to measure medication levels in his system.
I would imagine Navy doctors are more overwhelmed than specialists outside the military system.

Contact the Epilepsy Foundation of America and look for specialists in his area and/or where you live. A private practice may be more focused on his care. It's more expensive, but well worth it.

Last edited by alivenwell; 04-29-2008 at 10:28 PM.
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Old 04-29-2008, 10:04 PM
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Salute


First, I would like to say thank you to your son for his service in the Navy. That is very honorable. Second, Thank you for giving him that opportunity and supporting him in his time of need.

Now, welcome to CWE. I hope we can be a source of information for you as well as a nice place to relax. I keep the coffee hot around here for whenever someone needs to chat.

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Old 05-01-2008, 04:56 PM
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Thank you for your response. Steve did recently have blood work done and they told him the medications levels are where they should be, but he still has seizures, which he is just finding intolerable (because it's "supposed" to keep him from driving). His Navy doctor is unsupportive and is being transfered in June. This has all been overwhelming and now that I know Steve is being discharged it's like what do WE do about this now? We live near Boston and someone mentioned Mass General - they have an epilepsy clinic. So I'm thinking of contacting them for a second opinion right now (he'll be home for 2 weeks in June). And then when Steve comes home in August we will have to find a permanent doctor.
Last year I had ovarian cancer and had to learn all about that. This is about the last thing I thought I'd be doing this year with my young, healthy son!! Enough doctors!
Thank you for your support.
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Old 05-01-2008, 08:38 PM
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Arrow


NM:

Click on the Epilepsy Foundation logo
on the bottom of my sig-line: They
have a lot of support and assistance
that you can obtain there, including
for Military too.
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Old 05-02-2008, 08:42 PM
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Hello Navymom-

Sorry to hear about your son recently being diagnosed. I was a little shocked to see that he is on 2 meds at a total of 10 pills. The best thing you can do is a lot of research. You can research the meds and doctors that you are considering. Even though he can no longer make the Navy his career, I am sure that he will find another career. People that have seizures can accomplish anything that they want to. People from all walks of life have seizures. I actually know of a chemist that has seizures.

When you find a Neurologist, make sure you feel confident with that doctor. We are on our third doctor and she is wonderful. I have learned to go with my gut feelings.
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Old 05-04-2008, 07:16 PM
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Hi Navymom, as the wife of a retired submariner, your post really catches me! We are in Northeast CT and Mass General is a great place for help. The other would be in Worcestor if you can get him in to see Dr Catherine Phillips at Umass Medical. (call NOW to get him in by Sept or so. ) She is wonderful and caring.

I am so very sorry that seizures stopped his Navy career. Our son was diagnosed at the age of 7 when his dad was in. Our kids are the first generation not to be able to have military careers because of their seizures. Very hard on their grandfather who once argued with my son that he was just Copping out because of his seizures....I had to take my beloved father in law aside and explain this to him!

I hope that your son can gain control of his seizures very soon!

Ginny
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Old 05-04-2008, 08:15 PM
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Sorry to hear what happened to your son.
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Old 05-04-2008, 08:49 PM
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HELLO NAVY MOM!

I live down near plymouth about 20 minutes away.

I did go to Massachusetts General Hospital, the man i saw is Andrew J. Cole

he is Director, Epilepsy service . there telephone number is 617-726-3311,

fax 617- 726- 9250. You may want to call them and get more information

from them. Yhey do have a e-mail so check computer also.

My ex-husband was in the Navy on subs. I married him and i did have epilepsy, the doctors were ok, but i preferr neuros as they do now this area on seizures. I do have to say i did get the meds while in service but doctor never seemed to take time to go over medication. They did do blood work only if i really buged them alot. That is why i like to go on outside doctors.
now that i am not married and no longer connected to service i feel better seeing a neurologist, he seems to listen to you and understands you. I do live by my self. I do not drive, i walk were ever i goor friends take me were i may need to go. I am looking into having food delivered to my apartment, as it is now my dad brings me shopping every 2 months ( just me in apartment). Friends call to see if everything ok, my dad call around 3 times a week making sure i ok. I do go to church every sunday and in the choir and sing every wensday night and sunday also. so i am trying to keep as active as i can. I have had seizure in front of friends and they call 911 to get me to hospital. I let them now i have epilepsy and what to expect if i have one around them ( that way they now when one comes on). I go to sites and get information on what type of seizures are what. And what to do and how to do. I do take medication and yes it is trial and error on medications. At this time they got me on 3 meds , it has only been short time been on these ones.
I have beeen on lot others but they have not found combo yet for me.

nancy
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Old 05-05-2008, 02:47 AM
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Welcome Navymom thanks to your son for his service! As for the road you are traveling now, take faith in the site you have found and by all means pass the site along to your son. This place will help you learn, these people will help you move on with life one hug at a time or the familiar group hug when needed. Looks like you are already in the group hug now. One thing I have learned in my 11+ years with seizures, it is NOT I repeat NOT the end of the world. We rise from the ashes...or floor whichever and move foward with dignity(and the help of family and friends). Read as many posts as you can, it will enlighten and lift you
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Old 05-05-2008, 10:34 AM
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Just wanted to say hello and give you (((((((((((HUGS)))))))))))))))))
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Old 05-06-2008, 08:38 AM
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Originally Posted by Navymom View Post:
Last year I had ovarian cancer and had to learn all about that. This is about the last thing I thought I'd be doing this year with my young, healthy son!! Enough doctors!
Thank you for your support.
In 1998 my mother in law was diagnosed with Lung Cancer. Her and I were extremely close and so I became her primary caregiver through out her long illness until her death in November of 2000. By April of 2002 my father in law had to come live with us because he was unable to care for himself properly and I became his primary caregiver. 2005 he was diagnosed with Pancreatic Cancer and he passed last spring. Hubby and I sat together on New Year's Eve and said, "Here's to a year without a Hospital Visit." After all my parents are still young-ish and healthy. Our children seemed very healthy and I wasn't expecting any more children. So "Why not?" make this year or hospital free year. Fast Forward to February 25th...we found our girl on the floor in a full tonic clonic seizure. Needless to say we have had many trips to Hospital with more to come.

Doctors and potato chips have a lot in common. Remember that old potato chip slogan, "Betcha can't eat just one!"? It's impossible to just see one!
Good Luck to You. Keep us posted. OKAY?
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Old 05-06-2008, 10:34 AM
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Wink


Thank you all again for all of the information and support! Your responses have been wonderful and have done much to ease my mind. I have learned so much since joining this forum and have received many hints on where to look for more information.

Yes - it's been a tough year, but I do keep telling myself it could be much worse. Having a son in the military I am always thankful that he is safe and in one piece - and if he has to have a medical problem - at least this is treatable. Many people go through so much worse.

Interesting to read about Keppra and side effects. This is one of Steve's medications. Now I know that some of what he's going through (anxious, frustrated, angry) is a side effect.

I have learned to be thankful for what I have - you never know what's around the corner! Will be sure to keep you posted.

Chris
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Old 05-18-2008, 10:42 PM
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Hello! I'm sorry to hear about what you and your son has been through. I've had epilepsy for 15 yrs and i've taken at least 10 different meds. I used to have them when i was a baby,they stopped at the age of 3. I went 12 yrs without anything and got it back when i turned 15. I learned that epilepsy can leave your body and come back at anytime.I outgrow them and have to switch meds every 5-6 yrs.I take keppra and neurontin now. They seem to help. I don't have as many seizures as i did before. I use to take topamax and had many side effects from that drug. I lost my appetite,lost over 20 lbs, and very lethargic. I couldn't think or concintrate. I definitely recommend not taking that one. I went to Thomas Jefferson hospital for a week and was hooked up to an EEG monitor and on camara. They wanted to see how many seizures i have and what kind to see if i'm a candidate for temporal lobe surgery. I was having 5-6 seizures a day and didn't know it. They are one of the top hospitals for neurology. I highly recommend them. They are also doing a study on me, because when i was there,i was taking topamax,and the side effects were bad. But i hope things work out for the both of you. Take care!
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Old 05-20-2008, 01:35 AM
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Hey there Mandy, I totally concur with you on the Topamax 'trip'!! I'm no doctor but to the Navy Mom I would definately,strongly, recomend extreme caution with that one. I know why you lost weight Mandy...you forget,where the food is, when to eat, where did I put the kitchen, etc..etc..and the bugger creeps up on you! It took me a year to come back from the memory abyss and I still have 'black holes'. I chose to go med free for 3 years trying to clear that one out--the seizures were better and we're talkin' gran-mal. Sorry but that's atouchy one for me. I've had plenty of side effects including anaphylaxis so I am no stranger to 'whoa never did that before!' but that is one wicked little pill
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