New to Epilepsy, First Post

[criskris]

Hi everyone
I've been reading on this forum and others for about 4 months, but I have never posted anything. I've been trying to learn as much as possible and this forum has been a great source.

My daughter has Focal Onset Epilepsy. Her first seizure was in August of 2007. Her E activity occurs in her Right Frontal Lobe and manifests in Complex Partial Seizures and Simple Partial Seizures. She is 5 years old and no cause has been determined.

Other than Epilepsy, she is a regular Kindergarten girl, reading, math, and doing other work above her grade level. She plays T-Ball, and Basketball and takes dance and loves to paint. She smiles all the time and takes her nasty tasting medicine twice a day and chews her B-6 with a great attitude. (have you ever chewed a B-6 tablet or tasted Keppra oral solution? YuK!!) She laughs and carries on like a trooper, and just thinks all of the doctor, hospital, ambulance rides, blood draws, EEGs, MRIs, etc is part of life.)

She has about 1 CPS per month, and every 2 or 3 days, has a SPS. Her CPSs sometimes go status, and require Diastat (if we let them go that long) to stop them. Her SPSs usually last <20 seconds, and affect her right arm/hand, eyes, or just pain in her right front brain. We think that leg pains, and itching may also be an SPS.

She currently sees an Epileptologist in an incredible children's hospital in the area(although we are going for a 2nd Opinion), that seems to be doing everything by the book, but very busy.

She tried Trileptal, but was alergic, so now she is up to Keppra 7.5ML BID (very high dose), but we're not sure things are any better. There were no SPSs before Keppra, and the CPS were at about the same interval. She is begining to lose some motor control of her left hand and we assume this is from electrical damage to that part of the brain.

We are considering an alternative therapy with a Vibe Machine, while continuing the Keppra. Otherwise, we are in a wait and see pattern. Not sure how long the Doc will continue with the Keppra and waiting for success. In the meantime, we log the seizures, track variables and read research, hoping for control.

Sorry that was so long. I appreciate all of the great reads on the forum. This is a nice place.

Cris

 

[RobinN]

Hi Cris - Welcome. I am glad that you decided to stop lurking.

So sorry to hear about your little girl. My little girl is now 16 and has been having seizures for 1.5 yrs. Rebecca's are all tonic clonic variety. Sounds like a drink order doesn't it?

I am glad that you have a good Epileptologist. It really matters to be able to trust your doctors choices. I am not familiar with the Vibe Machine. Do you have a website that explains this? You can't link us, but is you give most of the address, we all can cut and paste it.

Rebecca takes only half of a theraputic dose of Trileptal. Each time I increased it, she had more seizures. For now I am leaving it since she already reacted to Tegretol. We are trying diet, hormones, and after the first of the year I am considering neurofeedback. I think she would be a good candidate. I can't say my daughter is a trooper, but she tolerates the daily changes this has caused.

I hope you find CWE to be a place of comfort for you.

 

[speber]

Welcome Cris!...

It sounds like you are good at keeping your daughter's spirits up!......GOOD JOB!

That is one of the absolute most important things in an epileptic's life IMHO....a sense that they CAN be happy and lead a somewhat 'normal' life should they choose to.

I'm glad you are finding good info. There is a lot here!

Peace.
:rock:

 

[Bee91]

Hi! :hello:
I'm sorry your daughter has to go through seizures...They suck:agree:
I've been having seizures for about a year and a half now but the doctors can't find a focus or anything on EEGs. They think it is too deep in the brain...

Can I ask? How hard was it for the doctors to find the focus of her seizures?:brain:

 

[alivenwell]

Keep trying until the right solution comes your way. The most you can do is remain supportive to your daughter because other people might not understand. Little kids can sometimes ask some pretty overt and obvious questions. Keep communication open with her as much as possible. She might give a clue that hasn't been known. And that could make a big difference. Stress for me is a big factor. I was little when I had seizures at school which starts soon for your daughter. I spent 4 years in one school in a normal setting where I was not allowed on play equipment, but I could climb trees, my swing set and ride a bike when I was not home. Exercise is a great stress buster. We moved to a different school district where the epilepsy was really mocked out by peers. It was absolutely horrible, but it inspired me to do work above and beyond my class' level. I then spent at least 4 years to prove I was OK for college prep. Ironically, one seizure in a cafeteria brought me to a school nurse who knew about Vocational Rehab. That practically paid for my first college degree (I had to battle with the guidance counselor over college prep!). I was employed for 2 years and saved enough money for a 2nd degree. Both are technically oriented degrees and I excelled in college. As your daughter gets older, keep looking for as many opportunities as possible to keep her busy and active. And ALWAYS be her advocate and speak up in her best interests. My mom did that and got me as far as I am today. I am employed, was promoted several times and I stay as busy as possible to ignore the ignorant. Yes, they're still out there (just like elementary school- some kids never grow up!).

 

[criskris]

Thanks for the replies. Sorry if I stumble around for awhile until I understand the mechanics and protocol here. There are some questions that I will try to answer.

 

[criskris]

RobinN, the VIBE Machine URL is vibemachine.com, but understand, it is not an alternative Epilepsy treatment, but a electromagnetic therapy for general body heath. Although some people with epilepsy have reported success with it. We'll see.

 

[criskris]

Bee91, Your question about finding the focus. She has had 3 EEGs. 2 sleep EEGs, and 1 24-hour video EEG. The 24-hour video EEG showed nothing, but she was still pretty hopped up on meds to bring her out of Status. The 2 other EEGs showed a slight abnormal pattern in the Right Frontal Lobe. The MRI showed nothing. So none of this was real conclusive in my opinion, however, her seizures are very characteristic of that part of the brain, so I believe that the slight abnormalities that they see are, in fact, the epileptic activity. In other words, the right frontal lobe controls speech, left hand, left eye, and some gastrointestinal stuff, and that is where here SPSs occur. Does that make sense?

 

[Bernard]

Howdy Cris, welcome to the forum. :hello:

Glad you decided to say hello.

I'll be interested to hear if this vibe machine has any effect on her seizure activity.

 

[Bee91]

Bee91, Your question about finding the focus. She has had 3 EEGs. 2 sleep EEGs, and 1 24-hour video EEG. The 24-hour video EEG showed nothing, but she was still pretty hopped up on meds to bring her out of Status. The 2 other EEGs showed a slight abnormal pattern in the Right Frontal Lobe. The MRI showed nothing. So none of this was real conclusive in my opinion, however, her seizures are very characteristic of that part of the brain, so I believe that the slight abnormalities that they see are, in fact, the epileptic activity. In other words, the right frontal lobe controls speech, left hand, left eye, and some gastrointestinal stuff, and that is where here SPSs occur. Does that make sense?

I understand. I was curious because we (well I) believe my seizures are coming mostly from the frontal lobe. But then again a lot of my seizures look like temporal lobe seizures so truly we are unsure. My 48 hr. EEG showed only some abnormalities in the left frontal lobe. But other long term EEGs showed abnormalities elsewhere including the temporal lobe and parital lobe...So we are pretty confused...My seizures look like they could be either one really...I do strange things, like frontal lobe characteristics, then the picking at things like temporal lobe....

Just shows how complex the brain is...onder:

 

[spinnymommy]

Hello Cris,

Just wanted to say hi and welcome you.

Hi and welcome!!

 

[TeeTees]

Hi Chris,

Welcome aboard. Glad you decided to stop stalking me

On a more serious note, don't be afraid to join in with any topic/conversation - the more opinions and answers we can get the better.

Enjoy the ride.

 

[brain]

:hello: Chris

Hope they find the answers, even in spite
that majority of the findings remains "unknown",
and that they will find the proper treatment and
get the ball rolling so all would be normal or
close to normal again!

And welcome to CWE!

 

[criskris]

Bee91,
Not knowing for sure where it is originating is extremely frustrating as you know, plus treatment options are sometimes different depeding on the focus as you also know. Here is an article that helped me in determining where I THINK the focus is. There isn't that much research on Frontal Lobe Epilepsy, and this is an excellent article. Let me know if you find any valuable reseach on Frontal Lobe Epilepsy. Here is the article, you might have to add some to the link, because I'm blocked out from posting a full URL.

w.emedicine.com/NEURO/topic141.htm

 

[criskris]

Bernard,

Thanks for the welcome. I'll post my results about the VIBE machine, but my scientific nature is very skeptical. With that said, however, Epilepsy has opened my very closed mind about alternative treatments and other people's conditions.

Cris

 

[Bee91]

Bee91,
Not knowing for sure where it is originating is extremely frustrating as you know, plus treatment options are sometimes different depeding on the focus as you also know. Here is an article that helped me in determining where I THINK the focus is. There isn't that much research on Frontal Lobe Epilepsy, and this is an excellent article. Let me know if you find any valuable reseach on Frontal Lobe Epilepsy. Here is the article, you might have to add some to the link, because I'm blocked out from posting a full URL.

w.emedicine.com/NEURO/topic141.htm

Thanks for the link! I've seen that article before and it gave me and my doctors much informatio! :rock: But all my seizures look so different all the time! Sometimes they look like they have the caracteristics of FLE and sometimes TLE so we are so confusedonder:

 

[criskris]

Update on my Daughter : Newbie

In August, Jessie had her first seizure, and in September, she was diagnosed with Focal Onset Seizure Disorder in the Right Frontal Lobe(A fancy word for Frontal Lobe Epilepsy). She had Complex Partials about monthly, Then recently began having Simple Partials in her hand, Then her left hand had almost continuous tiny tiny twitches. Anyway, after many doctors visits, neurologist, epileptologist, and hospital visits…and after being scanned with MRIs, EEGs, CATs, PETs, blood tests, spinal tap, and lots of other stuff that we don’t understand, Jessie received a new diagnosis Friday night at Cook’s Children’s Hospital after being Video EEG monitored for 3 days.

She was diagnosed with Focal Encephalitis. Her MRI 4 months ago was normal, however, the new one showed a small lesion in the occipital lobe of her brain (back of her head) about the size of a quarter. It is not a tumor or cancer.

She will be treated with Anabolic Steroids for 7 weeks. So watch out Barry Bonds in T-Ball next year she will be juiced up. The best case scenario will be that the steroids stop the spread of the lesion and she is completely cured. That is what we hope and pray for. She has a hard time moving her left hand the way she wants to, because of the seizure activity or the inflamation, but we hope this will clear up as well.

Luckily, the Neruo (Epileptologist) Team has not been able to link the finger jerks to ictal activity which is a good sign. (i.e. The spikes from her muscle jerks don't coincide with the spikes from E.) If that had been the case, the diagnosis could have been devistating. The Dr. didn't rule out Rasmussen, but didn't think that to be the case. (Thank God)

What I have learned
1) If you or someone you know with E ever starts having continuous activity (no matter how small), get to your neuro, as it may be encephalatory (inflamation) to get a fresh MRI.

2) Also, be careful. Sometimes Occiptial Epilepsy can fire off activity in other areas that my look like FLE or TLE, masking the actual location of the problem.

I would love to hear from anyone with similar experiences, although I understand that this is very unlikely.

Thanks for all the great posts and SSL (Sorry this is So Long).

Cris

 

[RobinN]

Hi Cris... no similar experience here, but I am curious as to what causes these lesions?
Is it viral, toxins, in utero?

My daughter had twitches in her leg for a while, but I think it was due to her meds at the time.(lamictal).

 

[criskris]

Hi Cris... no similar experience here, but I am curious as to what causes these lesions?
Is it viral, toxins, in utero?

My daughter had twitches in her leg for a while, but I think it was due to her meds at the time.(lamictal).

It could have been either of those or others, they just don't know. The lesion itself was not in utero, because it wasn't on the first MRI...however, the root cause could have been in utero.

I also wonder if the origianl CPSs, although very FLEish were caused by what was going on in this "forming" lesion.

I don't know if we will every find out these answers.

 

[RobinN]

I have been reading how MSG and related byproducts can cause lesions. It can even change hormonal balance. Scary how the food we grew up on can make us sick.
I can't remember how old Jessie is.