Hello from a Mum in the UK

[Deborah UK]

Hi!

Its my first time on any kind of forum, but Ive been looking at this site for years on and off, never really thinking I should join, but anyway, hello to all you at Coping With Epilepsy, I feel I know a few of you already....

My boy (and us) are having a hard time at the moment, I am trying to get him well enough to enjoy his 14 th Birthday, weve missed so many birthdays and Christmases ( is that spelt right?!) because he has been in non convulsive status etc, currently on the Gard Diet..always trying something and ever hopeful for a window when when can stabilise him and give him a chance to recover. When he has seizure free days he is a different boy and we have had seizure free periods so I constantly work to get those back and extend them for as long as we can.

I am mainly interested in diet, nutrition, and glutamate involvement in epilepsy. At present I sit and ponder about wild rice being a grass not a grain but cant find any glutamate content or amino acid content for it so I am stuck. I could try him with it but its a bit near his birthday to take a chance!

This kind of thing is the story of my life! But I will be dancing again as soon as he is well!

Deborah

 

[Nakamova]

Hi Deborah, welcome!

From your lurking you probably know that you are in good company -- there are many parents on this site, and quite a few members from the UK. In addition, using a dietary or nutritional approach to help control seizures is a very popular topic here.

There's some info on the amino acid/glutamte content of wild rice at the links here: http://nutritiondata.self.com/facts/cereal-grains-and-pasta/5752/2
http://www.whfoods.com/genpage.php?tname=recipeprofile&dbid=178

You might be interested in this thread form the archives as well: http://www.coping-with-epilepsy.com/forums/f39/glutamate-glutamine-5535/

Best,
Nakamova

 

[BuckeyeFan]

Deborah,

First of all, welcome to CWE and your new family. Stick around. These folks are worth gold.

Second, it sounds like you are ready for some long overdue hugs. Though we don't touch, you will feel them here. Lots of them going around. As I have learned over the years, the families need support just as much as those of us with E.

Best wishes for your son and let us know when his birthday arrives.

Many alternatives to meds are discussed here. One, neurofeedback, you did not mention and should check out.

Again welcome - :cheers:

 

[redskins18]

hiya, nice to see a fellow brit, im from reading in berkshire.

only been on the forum for a few days but the support and kindness is realy welcomed. iv had epilepcy for a wile now and it put a real strain on my famley. you will learn alot from other people with epilepcy hear that will be usefull to you...

when my medication makes me depressed the folks hear lisen and know exactily how i feel.

best wishes to you and your faimly

 

[Deborah UK]

Hi Nakamova,

Thank you so much for the link, Ive looked at it before before couldnt find any info about the wild rice but I got it today with your help, Thanks!

Im so glad I did too because it is way too high in Glutamic acid for me to try it for my son so its back to potato and a bit of white rice..

I dont get much time to spend at the computer so am not always able to reply quickly to a message, my boy is still waiting for a suitable school place after 2 years at home so its pretty full on at my place! Nice to hear from you and maybe you can let me know a bit about your story too sometime..
Thanks again, Deborah

 

[Deborah UK]

Hi and Best Wishes to you too!

Yes, its a really good forum and Ive learned a lot from it over the years, we can all learn from each other too, everybody has a different but very often a similiar story, hope you keep your chin up and good for you for sharing your feelings, everyone here seems to understand.

Thanks for your lovely message
Deborah

 

[Deborah UK]

Hi
Thanks for your kind reply, Ive looked briefly at nuerofeedback before, but my son has such terrible seizures on the Lennox Gastaux spectrum without warning and has developmental delay for his age, never thought it would help him as you seem to need a degree of sophistication to benefit from it and he operates at a 4 to 5 year old most of the time, hes 14 tommorow by the way!
I will look at it again properly though and I do appreciate your suggestion and
advice and feedback on it if you know anything about it personally.

Thanks again, Deborah

 

[Loopy Lou]

Hey there, I'm also from the UK (Blackpool at the moment). Just wanted to say welcome! X

 

[soozalish]

Hiiiii I'm from crappy cold wet Somerset in England!! :woot:
xxox

 

[Endless]

Deborah,

Welcome to the forum! I'm glad you found us.



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