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Sorry to hear that Robin and Rebecca!...

I'm telling you...it's in the air lately.

Onward through the fog...
:rock:
 
Robin-
It seems that Rebecca lots of times knows when the seizures are coming. What about having her carry Adivan with her. She can take a small amount when she starts getting dizzy or her "funny feelings"
I know when mine are coming most of the time. I have found adivan to be very helpful. If I take it right as I'm having the "funny feelings" ( I think it's 10mg of Adivan),lots of times it shuts the seizure down and I'm good to go.
They are very small pills and you don't even need water to get them down, so they can be taken on the go.

When I was her age I started having lots of seizures like her. It is a tuff age to begin with, add seizures to that and it gets even harder.
I worry about the amount to seizures she is having. I often read your posts and my heart just brakes for her. Everytime I read your posts I relive my teens, all those feeling start coming back.
When I was her age is when my seiuzure got out of hand, the more I seized the worse they got. I only had 4 choices for a AED. There is so much out there now, with so many choices. I know you worry about side effects, lots of times they get better with time. You just need to tuff it out for the first few months.
Had she tried Lamictal? I have a friend that is seizure free with Lamictal, she has the same kind of seizures Rebecca. I have found Lamictal to be a wonderful AED as well.
What about surgery? Do they know were the seizures are coming from? If I had, had surgery at her age there is a good chance I would be seizure free.
I waited to long ( I was 25) and by the time I had it done, I was seizing from both side of my brain. Up until that point they had only every seen spikes on my right side.
They did the surgery anyways, hoping the left side would stop if the right side wasn't seizing anymore. It didn't work but there isn't a day that I'm sorry I tried. I have meet several people that have had surgery and are seizure and med free.
One of which is my brothers sister in law.
Give Adivan a try, it may just be the key.
 
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Thank you for your thoughtful post Elisa.

She had another seizure today. First day of her period, and she said her stomach hurt. Problem is, did it hurt because of the time of the month or because something was about to happen seizure wise. We are just now seeing a connection between what she says she feels and what then happens.

We tried Lamictal and she started getting a rash, and the over all body aches were horrendous. She couldn't even pull her self up out of bed. She is an athlete, so this was highly unusual. The rash and sore throat made the doctor pull her off of it.

Surgery... well she won't even discuss that.
She does seem to be a candidate, as it is visible on the MRI.
Perhaps her doctor can get her to at least consider the possiblities.

I really do appreciate your response. Thank you Elisa
 
Hope it gets better for you guys soon!....

...being in school with E bites.

...and I'm lucky I haven't had to experience being an E caregiver (knock on all things wood)...must less the parent.

Wishing you Peace and Smiles
:rock:
 
If she is a candicate for surgery she needs to at least do the full work up. She may even be able to skip some of the tests if they can see stuff on a MRI. Lots of times people no nothing till they get in there and look. She is already one step ahead in the game.

Like I said, if I had done it at her age I would most likely be seizure free.
I like her, wouldn't even think about it. Well no, I thought about it a lot but then I remembered they would shave my head! Back then they shaved the whole head not just were they were going to make the incisions. When I was a teen having hair far out weighted being seizure free!
To take all that time out of my social life, and my running. ( I was a runner) I just couldn't be bothered. When they were offering me the surgery it was still a very, very new thing. Only a few hospitals offered it. My parents took me to New York and we discussed it.
My Mom wanted me to have it done so badly, but I said no. I wish she had pushed it but she didn't, mostly because it was still considered experimental then.


The surgery for the most part is painless, the brain has no pain endings. She would probably get some whicked headaches, mine didn't last long and regular over the counter drugs made them go away. I was out of the hospital 2 days after my surgery!
I would be willing to talk with her, or better yet I can get her in touch with my brothers sister in law. She had seizures just like Rebeccas and was having them as often as her when she went for surgery. She is seizure and medication free now! Has been for over 15 years.
 
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I had read somewhere that they would not even consider surgery until you had tried 10 AED's and found none to work.

I think I will have the doctor at least do the work up. There is no need to even be talking and thinking about it if she isn't a candidate.
 
Rebecca had another seizure last night. She went to a school dance, and it is my belief that once again she was dehydrated. I think many days she doesn't have a whole lot more than a cup or two of water. She does drink an organic lemonade, but still she is low on H20.

Lots of hard dancing...
Soda drinking?....
Tail end of her TOM...

everyone was very sweet, and she is such a trooper.
She now wants to try neurofeedback, so the call goes in this week.
Oh and she asked for the footpads that pull toxins. Do any of you have experience with these? I think anytime she takes an active part in her care I need to jump on the chance. Now how to get her to drink more water... she hates me nagging her on the subject.
 
Sorry to hear about the seizure. Glad she's interested in trying neurofeedback.

I don't have any experience with the footpad things. I saw the ad on TV a few nights ago and laughed. It looked like a scam. I haven't looked around the internet for info on them however.
 
You know it might be a scam Bernard. I have read reports from people that they see a change over time. I did tell her I want her to also continue taking the epsom salt baths. My need right now is to get her on board with helping herself. She relies on me, and then gets angry at my monitoring her. So if she can make some suggestions, I think it will be good for her to see whether or not they are a scam. If they are, then she can learn that too. I think that can be a good lesson. She needs to learn that not everything you read or see on TV is true. I am willing to pay the price for her to learn that lesson.
 
Who knows, they may work. But this...

As the Detoxifying Foot Pads are placed on our skin, the natural herbs interact, and begin their work by emitting far infrared energy.
Click to expand...

 
Tim

BERNARRRRRRRRRD!!!!! I guess it's not his fault he's so sexy. Back off chickidees!
 
Rebecca had a seizure today during lunch. Luckily she was on the grass in the middle of the quad (is that lucky?) but it went on for approx. 7 min. The EMTs were called. She came up ok on their tests, so I signed the release and let her rest in the nurses office. She slept long and hard, and couldn't pull herself to go back to class, so we left during her last class.

We have an appt on February 11th with the EEG Institute for a neurofeedback consultation. I am looking forward to this.
And we also have an appt with a Gastrointestinal Doctor a week after. I have many questions for him already.

Rebecca is feeling well tonight, eating and doing homework.
 
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She sure seems to have quite a few seizures around lunchtime. Is she photosensitive? Maybe the doctor needs to rule that out with the next EEG.
 
Boy yall are getting it rough lately...

Hang in there Robin and Rebecca.

Lots of extra stress right now apparently.

Hope it settles down quickly!

Spencer
:rock:
 
Actually BB I would have to disagree with you on the lunchtime theory. I looked back at my calendar, and she had on at lunch in Sept. The other ones have been prior to lunch or in the evening after dinner, and typically after a workout. So I have not seen any other connections to photosensitivity. That would be low on my list of triggers if at all.

Spencer - I would have to say this is a low stress time. Two were during her period, one during a physical activity (not sure of sugar intake at the dance) and yesterdays when she woke up she was complaining of hunger. Perhaps blood sugar drop that is not noticable.
Finals are over, new semester, classes remain the same for her.

I still have not understood why her pediatrician thinks a glucose tolerance test would not be helpful. I continue to read that high blood sugar and low blood sugar can be a trigger. What is considered low or high might be only a median range, and isn't it possible that someone might be outside of the norm?

Perhaps the GI doctor will have more insight for me. Waiting until Feb 20.....
 
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