Newbie - Hi All!

[guitargirl]

Hi and thanks everyone for sharing, the bits I've read so far have already been extremely helpful. Forgive me in advance if my grasp of proper terms is not up to par w/ many of you. There's alot to learn.

I am the Aunt of an 'almost 13 yr.old' boy, MG, who started having seizures last June. Most of the seizures were mild, he got a warning aura, would stay semi-conscious....and most were triggered by SOUNDS...ranging from computer beeps to his favorite music to hand held games.
As for possible causes...he was in a traumatic car accident months before the first (noticeable) seizure, not sure of how many months...His parents and doctor started him on Trileptol and he experienced dizziness and extreme fatigue, although had a break from seizures for almost 4 months. Switched to a doctor who seemed more 'current' and open minded and she suggested they might want to try a different med, as in her experience she'd been able to have people on meds, not having seizures AND not having side effects. So they weaned him off Trileptol and onto Keppra. Now that he's totally on the Keppra he's had 2 seizures in about 3 wks. They were almost as severe as the first grand mal, and supposedly lasted about 10 mins. Don't know what the doctor said as of this morning, but this is a quick background on the situation I'm dealing with. I already passed along the info and video of the Neurofeedback work. Very cool. They live outside of Austin, Tx and there seems to be someone doing the work there. He's also been getting acupuncture off and on for the past year. Diet and life style habits have been hard to keep consistent. He counts the days until he can ride a roller coaster again. His hormones are definitely raging.

One note: Whether or not there is any connection here, don't know - but I'll mention it. My brother has a brain tumor - benign, but he had radiation treatment 2 yrs ago and is doing VERY well. No seizures... the tumor mostly affects his vision as it's very close to the Optic nerve. He has become a master at lowering stress in his world as much as possible, and taking super great care of himself. Sometimes I wonder if my nephew's seizures are some kind of (unconscious) response to this or coping mechanism, or wish to take the 'brain' problem away from his dad.....?

Anyway,, I have to run for now, but look forward to checking in later tonight. Thanks again for being here!

guitargirl

[RobinN]

Hi Guitargirl - welcome to CWE

My daughter started having seizures at the age of 14. It certainly is not uncommon to have seizures begin at this age. The hormonal issues that females go through are also felt by the male species, even though they would like to think not.

They have also been known to begin after a known head trauma (concussion), or even months, not sure if I read even years later (that fact can be researched).

I believe that medication made my daughters seizures much worse. So do suggest that they keep records of increases in meds and increases in seizures. Hard to convince the doctors of this though. Except why keep taking a med if it isn't helping. My opinion of course.

My daughter is doing neurofeedback therapy with great results.

Do be careful of making it be more than what it is. Some thought my daughter was under too much stress, couldn't cope, and thought that all she needed was therapy. Thankfully the therapist believed that there was something organic occurring and that she needed more than just conventional medicine. Nutritional changes, hormonal balance, therapy, and NFB have been the direction that has been improving her health.

You are a wonderful aunt to care so much.

[epileric]

This place is great because you've got all sorts of relatives as well as people who have seizures that are great at sharing experiences & information. They're also extremely supportive of each other here.

I'm guessing from your name you'd probably appreciate Spebers Auditorium on this site. I (& many others here) seem to have an interest in playing &/or listening to music so check it out. I know he's got an interest on how music & sound might effect seizures (I do too as I love music). It looks like your nephew might have some interesting experiences to contribute.

Eric

[Loudmouth]

Guitar girl.just thught i'd pop in and say Hi.

[speber]

Your nephew has a problem with seizures triggered by SOUNDS?...

Check out the links section out in my signature line below....look for 'Musicogenic Seizures' among other things!

I hope you find some interesting and helpful stuff!

Peace
Speber

[Bernard]

Hi guitargirl, welcome to the forum.

[Meetz1064]

You've found a wonderful place to be, and lots of new friends, to boot!!

Stick around a while, you're going to fit right in, and learn plenty, I promise. Mr. B has a PRIMO site here!!

[guitargirl]

Good to hear from all of you! I think it will take me a while to figure out how to navigate this amazing site efficiently, but in the meantime I'll enjoy stumbling into some of your amazing posts... Did someone mention somewhere that there's an area for kids to talk to each other?

guitargirl

[speber]

Check out The Loft ! It's moderated by our very own teenage moderator Bee91.

The other mods will check in too, but we attempt to let this be a place the teens feel more comfortable.

Peace
Speber

[Bernard]

Did someone mention somewhere that there's an area for kids to talk to each other?

Check out The Loft ! It's moderated by our very own teenage moderator Bee91.

The other mods will check in too, but we attempt to let this be a place the teens feel more comfortable.

The Loft is only accessible/visible to CWE members. It's not public for guests (or search engines).

[guitargirl]

Thanks for that direction. I wonder if my nephew would be into that. I'm thinking it can be a lonely world without a community that relates to all this.

[RobinN]

I would think so, but my daughter has yet to take an interest. Guess she really doesn't want to participate somewhere that everyone knows far too much about her. I don't really blame her.

[guitargirl]

Thanks for that reminder. Makes good sense.

[hawke86]

Hi guitargirl,
Welcome to the forum. I hope you enjoy it here. This is a good forum. Again Welcome.

[tinasmom]

Hello Guitargirl -

Your nephew has a special aunt. This forum has helped me with many issues and sometimes its just good to know that there is always somewhere you can blow off steam when needed.

[jazz'smum]

Hello Guitargirl
welcome to you and your nephew.

[paradise survivor]

Aloha Guitargirl, You have landed in an excellent place! Great info and great peopleIt has become a real lifeline for me