New to this site

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

rLucy

New
Messages
2
Reaction score
0
Points
0
HI--I'm new to this site and it looks so inviting. We have 2 children (now adults) out of the family of 7 who are seizure-affected. (Since we adopted several kids, the two are not biologically related.) I have had no experience prior, but these two were totally different and their experiences make up the sum total of my small "knowledge" bank to share. :) First, our biological daughter began having complex partial seizures at age 27, and we went thru all the testing, etc., but found out that if she avoids gluten entirely, she has no seizures. We already knew gluten gave her headaches/sinus problems, so it came rather naturally to discover it, though it seems strange to the doctors we've seen. Next, our younger daughter had petit mal so much growing up, and the regular meds did not help at all. Then we heard about Manganese, and that some people are benefited by it. We talked to the pediatrician, gave it to her, she takes it to this day, and the tests show her as seizure free after years of seizing so much of the day that she could not learn in school, etc. She always just seemed sweet, smiley, and spacey! We thought she was just a daydreamer. But when we gave her the manganese (she didn't know what to suspect, as we give the kids vitamins, etc, anyway) she came to me and said, "Mommy, I feel so good today! I can think!" and we were sold on manganese for her. If only some of the other issues that came with the "packages" were so easily identified and cleared up. :)
 
Hello and welcome to the site. It sounds like you have a great deal of knowledge to share, and I hope that you enjoy your stay here.
 
Welcome, I

think you're going to fit right in, no matter what.

Your experiences as a mother will help others, parents and patients alike, so please feel free to share. And I'm sure you're going to learn some as well.

I'm sure you're a great advocate for your daughters--and this is a wonderful thing! Kudos to you! :bigsmile:

Welcome to CWE, feel free to kick up your heels, sit back and enjoy all the friendly people here. We're all hanging out in the nooks and crannies here, enjoying the Library and the Kitchen, having fun at this wonderful dinner party that Mr B is throwing for us. He's built us an AWESOME home here.

So stay and enjoy yourself, there's plenty of friends and fun.

Now, I'm off to find you some DECENT coffee. I burnt the last batch--AGAIN. *sigh* I just can't seem to make any....Eric? Buckeye? Birdy?

Cya later!

Meetz
:rock:
 
Hi rlucy, welcome!

So great to hear how nutritional changes have made a difference for you daughters. Other CWE members have also found that going gluten-free can help. Here's hoping that more and more doctors become aware of stories like yours, and begin paying attention to how nutritional choices/changes can affect seizure control.
 
amazing people, amazing support

Thank you for the warm welcome from so many of you--you people are amazing! The support from this group is such a welcome place in the storm! This is truly what community is about, and so necessary for a healthy life. Thank you.
 
Hi, Lucy! Welcome!

I'm so glad manganese worked for your daughter. That is truly a gift.

My cousin's baby was in the hospital with severe seizures after she was born. Vitamin B did it for her. And not one seizure since. Amazing!

:)
 
Back
Top Bottom