Belated Introduction

[RobinN]

Sorry, I jumped in without giving my story.

My daughter had her first two TC seizure a year ago June, at the age of 14. She has had a total of 20-25 seizures this year. She has had 2 MRI's, an MRA, 5 EEG's, a VEEG. She has an area of heterotopic gray matter in the right frontal lobe.

First Neuro said epilepsy, UCLA said psychogenic seizures, USC says epilepsy...
I know what I have witnessed and have no doubt there is an electrical malfunction.

She is currently trying her 4th AED. She also is using a bio-identical progesterone cream, since a couple tests showed that her system was not producing it naturally. She is eating from the GARD diet, limiting her sugars and chemical additives. I am researching more alternative approaches, because I feel the traditional medical community has failed her.

I have learned quite a bit here, and I want to thank everyone for the safe place to "let it out".

 

[Bernard]

Well, a belated :hello: hello to you then.

Sorry to hear about your daughter's seizures. We're glad to have you here exploring though.

I'd be interested to hear if you have noticed any improvement in her seizure control with the GARD diet

 

[RobinN]

Thank you Bernard. I appreciate the warm welcome here. This is a nice place you have created. More like a home, than the waiting room of a med center.
I stick with the GARD for now, because it has my daughter eating much more nutritiously than before. No refined white flours, and a balance of proteins and veggies. Still too much sugar, but I am pushing her to limit it. Many times she has seized it has been after an infraction, so she is beginning to see the connection. Problem is for me is sometimes the results don't happen for quite a while. I am wondering if it can be accumulative in any way.
Luckily she is able to continue with her passion. She is a competitive figure skater. She has not been told to stay off of the ice, and never has had a seizure while skating.
She has been reminded by her doctors to use caution. I think it uses another side of her brain. It helps her self image, and the activity is good. I think she would deal with not driving but never not skating.

 

[POSITIVEPERSON]

Belated welcome Robin. HI to you and your daughter.

I also like the GARD diet!!!!! My stomach feels so much better and I am losing weight.

But I find using homeopathy with the the GARD diet helps me.Have questions about the homeopathy , will be happy to answer your questions.

Wishing your daughter a sz free life .

Riva

 

[brain]

:hello: Robin

Glad you've found your way here,
and you've met me from the other
forums, but I'm glad you've found
a place here too. That's what we
are all here for, to vent, learn, and
laugh!

But sorry to hear about your own
daughter having seizures, they're
no fun; and I'm sure you're quite
concerned being the mother you
are! Never give up hope!

Technology is changing quickly and
what wasn't here today; suddenly
appears tomorrow!

(((( Hugs )))))

 

[Bernard]

... Still too much sugar, but I am pushing her to limit it. Many times she has seized it has been after an infraction, so she is beginning to see the connection. Problem is for me is sometimes the results don't happen for quite a while. I am wondering if it can be accumulative in any way.

YES.

This has been one of the big problems with Stacy in the past. She will do brilliantly following her diet regimen and she after a while feels bulletproof. So she starts cheating a little bit. The cheating continues until hello breakthrough seizure.

Her doc said to think of the body as having a buffer or tolerance for sugars. The more you cheat, the more you reduce the buffer/tolerance that your body can handle. So, if you only cheat once in a blue moon, your body should be able to handle it. But if you cheat continuously/frequently, you lower the body's ability to handle it and you tip the scale (so to speak). OTOH, the longer you go without cheating, the stronger your buffer/tolerance gets.

 

[RobinN]

Thank you for that info Bernard. I get this look from her and she says "It won't kill me" and I just have had to learn to say, you are the one having seizures, I can't care more than you do. Yet I am the one that has to make sure she is safe or I run the risk of not being "responsible".
I am very interested in the Glycemic Index. It makes so much sense. I just need to learn more so that I can "Sell" the idea.

I am curious about something, I have read Stacy's story and wonder why she lost weight on the GARD diet. I find my daughter can eat so much. I think a cross between the GARD and Glycemic would be a smart way to go.

 

[Bernard]

When Stacy was on the GARD diet, she ate mostly salads, chicken and cooked vegetables. She was always sensitive to sugars in her diet and so could not eat fruits or sugary desserts. The GARD diet proved to be a bit difficult to manage in our household.

 

[RobinN]

Hey Bernard,
I hope to find the Sugar Busters book this weekend.
Though on the GFCFSFCF diet we are following, I have added potatoes and rice to what you mention. I also make GFCF pizza, sandwiches and have found cereals that work too. For me I just haven't seen a less than the alternatives, only more healthy choices. I would like to take the sugars away too. We have reduced them, but not eliminated them.

 

[POSITIVEPERSON]

As a chef I want to put my two sense in : look in the natural food dept of your supermarket or a health food store for a gluten free bread.

As for a cake you can get a flour free cake, as a caterer I use to make that . You use ground almonds or walnuts instead.

Other foods that can balance out the diet is yams with olive oil, or potaotoes with olive oil or sweet poatotes.

There are alot of substitions out there!!!!!!!!!!

Riva

 

[RobinN]

Yes Riva that is what I have found. For me as the cook of the family, the shift has been rather easy. I haven't been able to convince the men in the house though.
My son with Asperger's is convinced though, and attempts to follow a GFCF diet. He sees positive results.

 

[Bernard]

I hope to find the Sugar Busters book this weekend.

You can find it at amazon.com: Sugar Busters

 

[POSITIVEPERSON]

Thats great Robin!!!!!! If you need any recipes for flourless cakes let me know I have a huge collection from when I had my catering business.


Riva

 

[RobinN]

Amazon has it on it's way.. Thanks Bernard

Riva - YUM now how do you make a flourless cake?
I have other flours like rice, been, and potato. Just not using wheat.