Re: Diet/and other frustrations-To Robyn and Lynne-electronics

[Guest guest]

My oldest son has major issues with electronics. Every grand mal seizure that he

had was right in front of the TV. During the fall of 2008, he started moving up

to the TV and was getting a little charge out of it. When he got too much of a

charge, he knocked the TV down. That TV must have been knocked down around 20

times before it finally broke. I kept remember the brand name but it would have

made a great commerical for durability. Anyway, this was before he had the grand

mal seizures. About a week later, he broke 2 TV's in a 20 minute time frame. I

still had one TV left and I kept the TV time limited. He then had his 1st grand

mal seizure while watching a video on the TV and I was still too stupid to

realize that it triggered the seizure. After the 4th grand mal, the TV was

turned off permanently. We went almost 9 months without watching TV (I would try

to sneak some in after they fell asleep). As of now, he can watch the computer

but only for a

limited amount of time. His absence seizures are highest at school and then I

found out they were allowing him to watch videos or play video games for

reinforcers. I told them that was a big no-no. I still have trouble on Saturdays

when I work and my sister-in-law's watch him because they have the TV on all

day. He is usually shaky when he gets home. They do watch him very carefully now

to make sure that he does not get too close to the TV. He also charges himself

up by flicking his hand in front of his eyes when it is sunny outside. My kid is

very photosensitive. Sorry to go on but this is a HUGE issue with my son. I

have pleaded with other parents that have children that are still having grand

mal seizures to stop allowing them to watch TV but they really do not believe it

is a problem and they really have no idea how to fill in the time since their

children do not have any down activities.

 

All the best,

 

Jill

From: donnaaron@sbcglobal .net <donnaaron@sbcglobal .net>

Subject: Re: Diet/and other frustrations -- To Robyn and Lynne

groups (DOT) com

Date: Saturday, March 6, 2010, 2:33 PM

 

Hey ladies,

Sorry I didn't respond to your earlier replies to me. Somehow I missed them.

Anyway, thank you for your input. does seem a lot better now -- I think he

WAS just adjusting to the new medication. He still gets those red cheeks,

though, but I honestly don't think it's usually related to food. He will come

home from school with normal-looking cheeks, and then he starts playing a video

game, and within about 1/2 hour -- red cheeks. I think his heart rate goes up

with the excitement and he just gets flushed. I've noticed that when he does eat

a " forbidden " food, his cheeks *and EARS* immediately get red. When he's

playing, it's just his cheeks that do so, even though he hasn't eaten anything.

So I'm still more inclined to believe that the red cheeks are related to

excitement and not a food reaction.

I realize that Dr. G would probably disagree, but this is where I am for the

moment.

Thanks again,

Donna

> >

> > Hi All,

> >

> > Is anyone willing to share some feedback/encouragem ent regarding Dr. G's

diet for our kids? We have been doing it for 3 years now and I am growing

fatigued from it (and falling off the wagon). Of course, Dr. G says how

important it is, but when we occasionally " cheat " , we don't see any negative

results, until we gradually cheat more and more. Then I think, " Well, maybe

is one of those kids who does not need the diet " . Meanwhile, three

months go by and were wondering if the diet needs to be adjusted.

> >

> > We are adamant about no dairy, but I think we give far too many carbs. Have

any of you gone off the diet and still been able to maintain improvement with

the protocol?

> >

> > Maybe I just need a kick square in the pants to put me back on track! Any

comments/suggestion s appreciated.

> >

> > Thanks in advance,

> >

> >

>

>

>

>

>

[Guest guest]

I know for a lot of kids, videos and electronics can trigger seizures. For my

kids, florescent lights were a problem.

Robyn

________________________________

From: Jill Boyer <sjillboyer@...>

Sent: Sun, March 7, 2010 5:36:11 PM

Subject: Re: Diet/and other frustrations-To Robyn and Lynne-electronics

My oldest son has major issues with electronics. Every grand mal seizure that he

had was right in front of the TV. During the fall of 2008, he started moving up

to the TV and was getting a little charge out of it. When he got too much of a

charge, he knocked the TV down. That TV must have been knocked down around 20

times before it finally broke. I kept remember the brand name but it would have

made a great commerical for durability. Anyway, this was before he had the grand

mal seizures. About a week later, he broke 2 TV's in a 20 minute time frame. I

still had one TV left and I kept the TV time limited. He then had his 1st grand

mal seizure while watching a video on the TV and I was still too stupid to

realize that it triggered the seizure. After the 4th grand mal, the TV was

turned off permanently. We went almost 9 months without watching TV (I would try

to sneak some in after they fell asleep). As of now, he can watch the computer

but only for a

limited amount of time. His absence seizures are highest at school and then I

found out they were allowing him to watch videos or play video games for

reinforcers. I told them that was a big no-no. I still have trouble on Saturdays

when I work and my sister-in-law' s watch him because they have the TV on all

day. He is usually shaky when he gets home. They do watch him very carefully now

to make sure that he does not get too close to the TV. He also charges himself

up by flicking his hand in front of his eyes when it is sunny outside. My kid is

very photosensitive. Sorry to go on but this is a HUGE issue with my son. I

have pleaded with other parents that have children that are still having grand

mal seizures to stop allowing them to watch TV but they really do not believe it

is a problem and they really have no idea how to fill in the time since their

children do not have any down activities.

All the best,

Jill

From: donnaaron@sbcglobal .net <donnaaron@sbcgloba l .net>

Subject: Re: Diet/and other frustrations -- To Robyn and Lynne

groups (DOT) com

Date: Saturday, March 6, 2010, 2:33 PM

Hey ladies,

Sorry I didn't respond to your earlier replies to me. Somehow I missed them.

Anyway, thank you for your input. does seem a lot better now -- I think he

WAS just adjusting to the new medication. He still gets those red cheeks,

though, but I honestly don't think it's usually related to food. He will come

home from school with normal-looking cheeks, and then he starts playing a video

game, and within about 1/2 hour -- red cheeks. I think his heart rate goes up

with the excitement and he just gets flushed. I've noticed that when he does eat

a " forbidden " food, his cheeks *and EARS* immediately get red. When he's

playing, it's just his cheeks that do so, even though he hasn't eaten anything.

So I'm still more inclined to believe that the red cheeks are related to

excitement and not a food reaction.

I realize that Dr. G would probably disagree, but this is where I am for the

moment.

Thanks again,

Donna

> >

> > Hi All,

> >

> > Is anyone willing to share some feedback/encouragem ent regarding Dr. G's

diet for our kids? We have been doing it for 3 years now and I am growing

fatigued from it (and falling off the wagon). Of course, Dr. G says how

important it is, but when we occasionally " cheat " , we don't see any negative

results, until we gradually cheat more and more. Then I think, " Well, maybe

is one of those kids who does not need the diet " . Meanwhile, three

months go by and were wondering if the diet needs to be adjusted.

> >

> > We are adamant about no dairy, but I think we give far too many carbs. Have

any of you gone off the diet and still been able to maintain improvement with

the protocol?

> >

> > Maybe I just need a kick square in the pants to put me back on track! Any

comments/suggestion s appreciated.

> >

> > Thanks in advance,

> >

> >

>

>

>

>

>