son newly diagnosed with epilepsy

[Navymom]

Hi Mandy - thanks for writing. Interesting that you have to change meds every few years - or that seizures come back after being absent for many years. Kind of a bummer. Steve is on Keppra and Depakote and is tired and unfocused. He continues to have seizures - at least one and as many as 5 a day. He's learning what can cause one - going from dark to light, stress.

The Navy is finally sending him to an epilepsy specialist is Seattle. I think they are going to hook him up again for EEG and try to find out what's going on. Of course, I still worry about what this means for his future. He's so depressed - 21 years old and he can't have a beer (not the end of the world I know), can't drive (though he does), can't do the work he loved on the submarine, can't stay in the military.

Reading here has given me hope, but it also seems this may not be an easy fix. Will keep you posted. Steve comes home next week for a 2 week leave. Will be good to see him and see how he is. Thanks for your input!!

 

[RobinN]

http://www.homecoming4veterans.org/

Homecoming for Veterans (previously EEG4VETERANS) is a national outreach program to provide free Neurofeedback training for veterans for the rehabilitation of Post-Traumatic Stress Disorder and issues of brain performance resulting from traumatic brain injury, blast injury, concussion, whiplash, and chemical exposure.

The EEG Institute, a world leader in Neurofeedback research and training, and the Brian Othmer Foundation are offering this cutting-edge treatment, at no cost, for veterans suffering from Post-Traumatic Stress Disorder (PTSD) through a network of clinicians across the country.

 

[paradise survivor]

Robin, you are amazing:clap:you bring the term Dr. Mom to a whole new level-I am constantly amazed at your level of self education and information-someone should give you an honorary degree in neurology! I'm sure your daughter appreciates you but we appreciate you too:banana:I wish my own Mom could be as supportive, fortunately my hubby does his best although not as informed or proactive. You are a light in the darkness:woot:

 

[CJR]

:agree: :rock: :agree: :rock: :agree: :rock:

Robin, You are my role model in all of this. I only hope that I can be half as informed as you are. You're simply the best! :adore::adore:

 

[skillefer]

I agree with Paradise! Yay Robinn! And to all those parents and spouses who take the time to educate themselves for the sake of the ones they love!

 

[minnbikergirl]

Welcome Navymom !!
Im sorry to here about your son. I am a Navy brat. My father was a retired submarine office in WWII. It was my life, and due to my epilepsy, I was not able to join. But I am sure that there are physicians out there that will help.. It is trieal and error, and alot of research..this chat room has alot of info. for you..if he has been discharged I am sure that he will be recieving health insurance from them.. and they do have some good insurance.

good Luck !!!!

 

[kayakmom]

Hey Navymom, There are some GOOD Doctors in Seattle, I talked to one in Seattle for consult over the phone who I really respected. I asked about his specialized Dense array EEG and VIA Email and was so surprised he emailed back and said we could speak over the phone. He asked if I would be willing to look at my son's chart if it was ok with me! I mailed it to him and he read it and called me back in a week! He was very frank with us on his opinion. (Our current doctor was even more surprised when he called him with his opinion since he had not known that we were seeking this opinion! lol!) It helped us immeasurably! It helped more that this doctor told ours how much I spoke to him about the respect I have for our current doctor, a true thing. We just were at an impass at the time and needed fresh eyes. The Seattle Dr is at Harbor View Hospital if you want his name Private message me. He is very good I highly recommend him. I first heard of him through someone else in Seattle who had him for surgery.

Best wishes for your son!
I know that the depression on top fo seizures is so very hard to cope with and your position of seeing this from so far away makes it so much harder!

Ginny

 

[Navymom]

Seattle Hospital

Hi Ginny - when I read your last post I thought what a coincidence! Steve is being admitted to Harbor View Hospital in June for what could be up to a week. I'm not sure of the name of the dr. he's seeing there. What dr. did you talk to? This past week Steve saw a psychologist to determine if his seizures are totally physical or not. (Though he'd already seen a Navy psychologist). The guy scored Steve at 100 and said he'd never given anyone 100 before. So at least they are studying his seizures further trying to figure out what is causing them.

Steve will be home this week for his brother's graduation. He'll go back to Washington June 12 and go in the hospital June 14. Hopefully that will tell us a bit more.

Thanks for writing. Have a great weekend!

Chris

Not sure if this will be a private post or not. If not please e-mail me at:
. Thanks so much.

 

[kayakmom]

HI Chris, I sent you an Email! SO glad he is going to have time at home first! It is great that he did well on the Psych testing and that he will also be seen at Harbor View! from all I have heard that is a wonderful facility! It is where my son will be seen if we transfer to Washington with my husband's work.

Best wishes!

Ginny

 

[RobinN]

Paradise Survivor, CJR, Skillefer:
Thank you all, I have sent you a PM so as not to hijack this thread.

 

[JanieNut]

Navy Med was my only Med for 38 years of my life (Dad and Husband) --- been there!

Hi Navy Mom -
I know EXACTLY how both you and your son feel. It is all a little overwhelming when facing that GREAT BEAST - called Navy Medicine. There are really great - helpful doctors and some dangerous - crazy ones, like the outside – but in the Navy you don’t have the option to go to another doctor. But now your son will have YOU on his team to be his advocate. An advocate is the most important team member. Believe me. Sometimes my husband goes with me to my doctor appointments just to hold my hand when I have to be confrontational - as happened recently, I was having serious drug reactions to Topamax and my doctor was NOT GETTING MY PHONE MESSAGES. They were getting side tracked to his P. A. and she was giving me the exactly wrong advice. Finally - my husband took me by the hand to see the doctor personally - it turns out I was in serious danger and the P.A. could have caused me harm.
One more thing - and this is for your son - My husband was planning on a career in the Navy too. He had to take a medical discharge for a serious ankle injury that was misdiagnosed by a Navy Doctor and caused permanent damage so that he was no longer able to serve on a ship - he had to take a Medical Discharge too. He was so discouraged and disappointed. Turns out it was the BEST THING THAT EVER HAPPENED TO HIM! He has a great job and is really happy now. The old ‘closes a door and opens a window’ story!

 

[Mandy]

Hi Navymom,
How are things going? I hope that things are well. I understand how your son feels. I'm going to be 31 soon and i haven't had a drink in 9 yrs, or driven in 5 months. I can't work right now either for the first time in 16yrs. It sucks. I take Keppra and Neurontin. I've taken Depakote before and it made me gain weight and tired all the time. You have to be very careful with that medicine because it can cause problems with his liver. Make sure his Dr does a blood test on the liver once a year and make sure he eats with it.I have no side effects with the Keppra. Right now i'm deciding what to do about surgery. They say i have a 70-75% chance on never having seizures again. Thomas Jefferson hospital has a great Epilepsy center, and they have helped me a great deal. My dr had me stay at the epilepsy center for 1 week so he could study my seizures. I had about 45-50 while i was there. They captured them all on camara. I learned alot while i was there as well. I wish you and your son the best of luck! Take care and keep in touch!