Update on Navy son

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Navymom

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Hi Everyone! My son, Steve, just spent two days in Harbor View Hospital in Seattle being studied. He was hooked up to monitor seizure activity and was quickly diagnosed as having simple partial seizures. He was taking Keppra and Depakote, but was not being controlled. This dr. is taking him off Depakote and putting him on Topamax. I've read some bad things about that drug in this forum so I'm kind of nervous about how Steve will react to it. But I know everyone is different and maybe it will be ok for him. Has anyone been on Topamax with good results??

He's got 6 more weeks in the Navy and then will be heading back home. And then instead of worrying from far away I get to worry up close!

This forum is great for a place to vent fears and frustrations - no one I know has any idea what this has been like for us.
 
I was on it. It worked for a little while. It worked for about six months then my body became immune to it. I hope topamax works works for your son. I know everyone reacts to it differently.
 
Hi Navymom, hopefully the Topomax will work out for him. It's no fun riding the AED carousel.
 
Hi Steve's Mom!

Glad they figured it out. Hope he is doing well and balances out with the Topomax. Keep us posted. I am sure you will feel much better with him home!! Thank him for his service!!!! Our family truly appreciates his sacrifices for our country.
Michelle
 
I too hope this is the answer.

Any chance of finding someone treating seizures with NFB near you?
Rebecca continues to do really well since starting it.
 
Hi Navymom - I can see it as good news that your son has been in Harbor View and was diagnosed. Have they found what caused/started the seizures?

I've been taking Topamax since it became available and I haven't had problems.

Please give Steve a "thank you" hug for me.
 
Another salute to your son. :clap: I support all servicemen from all countries doing what is right to protect their homes, families, countries, and the rest of us as well. :clap:

If my life had taken a different path, I would have probably ended up in the Navy or Coast Guard. No Topamax experience here, but 5 years of Keppra. Keppra isn't too bad and like the others affects everyone differently.

You should be aware of possible mood swings when he comes home due to the Keppra and the emotional trials of the E. He may not get any of that (it would be easy to hide from you long distance), but be aware that he may struggle with it at times and just keep loving him.

Our prayers will continue.
 
Navymom,

I don't know much, if anything, about the difference between someone being honorably discharged or medically discharged from the military, but I will say that your son should already qualify for at least 10% service related disability. 'Service Related' because he started having seizures while in the Navy. How I know about this is because my seizures started shortly after I joined the Navy myself, but I did not know anything about seizures and epilepsy back then. What I first experienced was what I called "slurred speech". I brought this to the attention of one of the ship's doctors, and he thought I was trying to make up an excuse to get out of the military. With that reply, I wondered if I really should try to get out. But I didn't. My "slurred speech" problems eventually faded away as I was getting used to being in the Navy. The doctor on the submarine that your son is stationed on is probably just a primary doctor, not any type of specialist such as a neurologist.

You and your son might do some searching for information through the Veterans Administration (VA). By using the information in your posting as to where you are located, I started searching by going to va.gov and found information about an Outpatient Clinic, located at 605 Lincoln Street, in Worcester, MA 01605, with their phone number 508-856-0104. Then I checked that outpatient clinic's individual website http://www1.va.gov/directory/guide/facility.asp?ID=625 , which shows that there are neurology services provided and or arranged through the clinic. Your son shouldn’t have any problems getting his medical needs taken care of through the VA.

By already knowing about the information pertaining to epilepsy and service related disabilities, just a few days ago I wanted to post a reply on another support group. I searched the Internet to see if some information was available online, and sure enough, found what I was looking for. The information is located near the bottom of this website http://edocket.access.gpo.gov/cfr_2004/julqtr/38cfr4.124a.htm, under the title of “The Epilepsies”.

To give you an idea about how the process works, when a person applies for a service related disability rating for the first time or is applying for a higher disability rating, if the rating is approved, that disability rating and VA compensation does not start when it was approved; that rating goes way back to when the person filled out the application. So for however long it takes to get an approval, the amount of back-pay the person will be receiving is going to be that disability rating percentage, multiplied by the number of months the individual had to wait for the approval. For example, let's say a military veteran was discharged at the E-5 pay grade and it took 18 months for the veteran to be approved for the service-related disability of 40%. The Disabled American Veteran (DAV) will be receiving their first monthly check, for the 40% service-related disability, at the E-5 pay grade…PLUS, an additional check, in the amount for the 40% per month they missed, at the E-5 pay grade… times… the 18 months they had to wait for that rating approval.

I was planning on making a career in the Navy as well, but the main reason why I decided to get out of the military, had to do with military cutbacks. I haven’t driven a vehicle since December 1996 and have been unemployable since around Spring 1997. At first, having to deal with epilepsy can be difficult and frustrating, and hard to believe, but it is not impossible to handle. Learning and understanding the details about seizures and epilepsy can be so helpful because ‘Knowledge is Power’. I’m still lucky enough to have both of my parents helping me, to get me to places, such as grocery shopping and going out to restaurants to eat.

What I want to share with you now is what I consider has been one of the best sources of information about epilepsy. This information is connected to what’s called, The SEE Program (Seizure & Epilepsy Education). The individual who created and does the presentations of the SEE Program, Dr. Mittan, is a neuropsychologist. I have been to both of the two most recent presentations that he has done in the state of Texas, and he is soon to be doing just a single one-day presentation in Lubbock, Texas, this coming August, which I am also planning on attending. In part of his website there is a section called SEE Library, which is at http://www.theseeprogram.com/html/s_e_e__library.html Back in the year of 2005 he did 2 series of articles, divided up into three separate parts, which were published in the Exceptional Parent magazine. All of those articles are available in PDF format in the SEE Library. And even though the articles are talking about children, a lot of the information can also pertain to adults as well.

I hope that this information can be helpful for you and you son. If you have any questions, please feel free to ask.
 
Thank you all so much for your wonderful responses! I know this is happening, but with Steve still in the Navy and 3000 miles away, somehow it just doesn't seem real. It's been very hard for my husband and I to fully come to accept this new reality for our son. But when he comes home in August it will become very real for us. I'm sure I will turn to you all again for support.
Robin - I've read about your daughter's experience with neurofeedback and will definitly look into it more.
Nancy - So glad to hear of your experience with Topomax. I will relax a bit now! Steve's seizures started about 4 months into a 6 month submarine tour. From what I've read it was probably a combination of stress, lack of sleep, and caffeine. But what makes one person have a seizure and another one is fine? There were plenty of other guys in the same circumstance. Who knows. Would this have happened had he not been on the sub? We'll never know.
Thanks BuckeyeFan for the alert to mood swings. A few phone calls a day will certainly be different from being back home living with the parents (just what he does not want to do).
Batman - what a lot of information - thank you so much for looking all of that up! Steve was rated 40% disabled and is receiving a medical retirement by the Navy. But it's temporary - good for 5 years. Then, from what I hear and read, dealing with the VA is a
whole different thing and that it will be possible to get his disability rating bumped up. But, like you said, it is a looooong process. I don't look forward to helping Steve deal with all that government red tape.

Thanks again - will keep you posted.
Chris
 
Aloha Navymom, Glad you got some answers, it took many years, many tests and several docs before everything lit up like a Christmas tree. I was diagnosed back in '97 but got real and complete info and explanation about two months ago- partly because we just didn't have the kind of equiptment here till now. The last round was full 7 days in epi lab, eegs, ekgs,mri's, pet scans, and neuro/psych evaluation. ( why yes Virginia, I do glow:roflmao:)On the subject of Topmax....be aware, be very aware of any mental changes in memory, disorientation, cognitive abilities.
Another thing you need to watch for is eating or not...the reason many people loose weight on this drug is that you forget to eat...or where the food is...and often times we don't see it ourselves, the changes I mean. My hubby and I fought over these changes for a long time before I realized what was happening to me, control was good, brain loss was BAD not a goog enough trade off for me but it took time for me to realize. I was very good at 'compensating and hiding the 'holes'. If my hubby knew how bad it really was - he would have choked the doctor. Just a heads up not a judgement:twocents:
 
Topamax

Another thing to watch for is problems with spatial awareness. I am now having difficulty saying what is my left and right, and also naming shapes,doing anagrams,things like that.At 11 I was in the top 3% in the COUNTRY in my spatial tests, now i cant get my shoes on the right feet without the kids help...
 
Thanks for the alerts on taking of Topamax. Makes me nervous! Very hard to tell from far away too. He's now complaining of foods not tasting right.

Chris - Steve's mom
 
I'm glad I am not the only one with brain drain! That is absolutely the worst side effect! To me, my mind and memories are me...what I have amassed living life. That is the worst thief.
 
Sorry to break it to you but Topamax messed me up alot. I couldn't function, think,finsh sentences,lost my appetite and i lost over 20lbs. I only took it for 4 months though. I hope he has better results with it.
 
NOW I say it ... When I started Topamax ( the day it was available to the public) the prescription was for too much and I went into the diet crash. I forgot food existed. I really did. I didn't eat anything and I even forgot to prepare food for husband (yikes!!).

In no time at all I went to 94 lb fully dressed in the heaviest clothes & shoes I owned to keep my neuro from yelling at me. I always stuffed myself with anything I could find and all the water I could drink trying to weigh as much as I possibly could at appointment time.

We simply quickly tapered down and restarted it to a safer amount slowly and carefully.

I talk about Topamax so positively, don't I? It didn't stop my seizures.
 
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