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Old 07-26-2008, 08:38 PM
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New Here - Saying Hello :)


Hi,

I'm mum to five children, two of whom still live at home. My youngest is 7yo and has T1 diabetes and polymorphic epilepsy including benign rolandic epilepsy.


I have tried to find alternatives to medication, but reluctantly agreed to start my son on Tegretol a few weeks ago, as some of his night/early morning seizures were progressing the wrong way,becoming more intense, generalised and lasting longer.

I removed Aspartame from his diet a few months ago, and saw his daytime mouth buzzing virtually disappear. I have recently started adding fish oil to his diet, and am hoping that he is one of those kids who will eventually be able to get by on just the fish oil as a therapy.

I'm still not fluent with all the terminology, and it's an area I have been very ignorant in. I am learning little by little, and am really pleased to have found this forum.

Look forward to sharing your journies with you.

Jay's Mum
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Old 07-26-2008, 09:33 PM
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Welcome!

This place is great. There is alot of information on this website, including alternate treatments. Im sorry to hear about your son. There are alot of parents here. Its good to have you.
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Old 07-26-2008, 09:43 PM
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Hi Jay's Mum,

Welcome to the group! Hope you son is doing well and keeps improving! I am still learning myself. You will find great support and info. here..it has been wonderful for me! Super people!!!!

Take Care!
Michelle
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Old 07-26-2008, 09:59 PM
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Talking Hi & welcome


to CWE!!!

You've found a wonderful place to be! Mr B has made a wonderful home for us all here.

Buckeye should be by sometime soon with coffee.......kick your feet up, and stay a while!

Meetz
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Old 07-26-2008, 10:19 PM
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Hello Jay's mum and welcome
all the best to you and your son.
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Old 07-26-2008, 11:15 PM
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Welcome Jay's Mum -
Hope you find this place as helpful as I have. There are so many wonderful people here. There is also a link for alternative treatments that you might want to check out.
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Laura: Mother of Tina 11/30/81 to 8/3/06 (SUDEP). Grandmother of Nicole 8/30/01 complex partial seizures (hereditary), Lamictal

"I put my hand in your hand so you know that you are not alone."
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Old 07-27-2008, 05:56 AM
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Thank you all very much for the welcome. It's good to be in contact with real people in the same boat!

Jay's mum
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Old 07-27-2008, 06:07 AM
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Question What Does This Mean Please?


Just wondering.....when the brain icons appear,() what do the various blobs and marks mean??

I see they vary from person to person, and I think mine has changed even in the short time I've been here.
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Old 07-27-2008, 09:02 AM
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LightningBolt If you look


down at the very bottom of the front page of the forum, there's a key of sorts.......when you see one with 2 pennies in it, that means you've contributed your own "2 cents" to the discussion

other forms of it mean that it has new posts or no new posts etc......I can't remember it all..............

Last edited by Meetz1064; 07-27-2008 at 09:05 AM. Reason: clarify
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Old 07-27-2008, 07:45 PM
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hi jaysmum
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Old 07-27-2008, 09:42 PM
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jaymum
Welcome to CWE. I hope you enjoy it here. Everyone is cool and friendly. You can find a lot of good advice and information on this website. Again Welcome.
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Have a good day.
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Old 07-28-2008, 04:06 AM
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Thank you!
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Old 07-28-2008, 05:39 AM
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Hi Jay's Mum, welcome to the forum.

Originally Posted by Jay's Mum View Post:
I have tried to find alternatives to medication, but reluctantly agreed to start my son on Tegretol a few weeks ago, ...
We have a page listing numerous alternative/complimentary therapy options.

Originally Posted by Jay's Mum View Post:
I removed Aspartame from his diet a few months ago, and saw his daytime mouth buzzing virtually disappear. I have recently started adding fish oil to his diet, and am hoping that he is one of those kids who will eventually be able to get by on just the fish oil as a therapy.
Sounds like you are making good progress with the diet angle.

Originally Posted by Jay's Mum View Post:
I'm still not fluent with all the terminology, and it's an area I have been very ignorant in.
If you hang around here, you'll get up to speed in no time. These are good places to start:

Epilepsy 101 - Part FAQ, Part tips and advice

Proactive Prescription for Epilepsy

Originally Posted by Jay's Mum View Post:
Just wondering.....when the brain icons appear,() what do the various blobs and marks mean??
Some are obvious (, , , etc.), some don't mean anything (, , etc.) and some can mean different things depending upon context.
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

Would you like to help support this forum?
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Old 07-28-2008, 02:03 PM
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Hi Jay's Mum! Welcome to CWE. Check out the alternative therapies thread. Sounds like you've made a good start by removing aspartame from the diet. Many of us keep logs of what we eat and drink, as well as how much sleep we get, any seizures we have and any stress we're under. You might want to keep a log for Jay. See if there's any tie in between what Jay eats and days he has seizures.
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Old 07-28-2008, 07:50 PM
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Hi again, and thank you!

The log seems a good idea. I think at the time, I'll never forget what I see but after a while events blur, and of course, I can't recall sleep/diet patterns of the day. There are also the not-so-black-and-white symptoms inbetween full seizures.

There's so much to learn and take in,and this is just the sort of friendly, informative and interactive forum I was looking for.

Thanks again.
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Old 07-28-2008, 07:52 PM
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Hi again, and thank you!

The log seems a good idea. I think at the time, I'll never forget what I see but after a while events blur, and of course, I can't recall sleep/diet patterns of the day,so I'll start recording them. There are also the not-so-black-and-white symptoms in between full seizures.

I'll take a look at the complimentary therapies section too.

There's so much to learn and take in,and this is just the sort of friendly, informative and interactive forum I was looking for.

Thanks again.
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