Re: Intractable seizures?Bill

[Guest guest]

Bill, Thanks for your help. Most of the things you mentioned we have

made adjustments to. To clear up Logan is on about 450 calories. The

ratio is 4.3-4.5 to 1. Because there isn't any fruits and veg at the

moment. We have vit and cal mag zinc. He is " going " every 3 days. I

made his meals 1/2 meals and spread them out. Otherwise is was too

long between feeding. This seeems to be working the best. I measure

and keep track of everything and I mean everything. From diet to mood

to activity and etc.

Logan is having a repeat MRI tomorrow. His other one was when he was

9 months old. He is 26 months old now. Pete and I decided that if it

is negative then we are going to try the diet without meds. It

absolutely cannot be any worse than it is now. He has been seizure

and med free before. Our biggest mistake was the calories. He did

lose 1 pound so far. Maybe it will work. Thanks again. I look forward

to hearing from you. It helps me alot.

Laurie

> >

> >>Laurie - has partial complex seizures. We went through the

> >

> > drug

> >

> >>store to, with no avail. The diet has been our miracle, yet we

> >

> > don't

> >

> >>have complete control (but ~ 95% improvement since the diet).

> >

> > We've been

> >

> >>on the diet for 4 years. Don't lose hope -- keep searching,

trying,

> >>asking, but never give up. You can't. How long did you try the

> >

> > diet?

> >

> >>What ratios? Give us some insight.

> >>Kathy

> >>On Sun, 22 Feb 2004 02:50:53 -0000 " peteymedic1 " <peteymedic@h...>

> >>writes:

> >>

> >>>Does any one have a child with intractable seizures? Complex

> >>

> > partial

> >

> >>>or simple partial? We have been thru 8 meds and have had up and

> >>

> > down

> >

> >>>success with the diet. We have had med free and seizure free.

But

> >>>when the seizures come back...meds are added again. This

viscious

> >>>cycle almost seems to be the cause. It seems we are running out

> >>

> > of

> >

> >>>options. The 9th(out of 10) Neuro told us this the other day. We

> >>>have

> >>>2 neuros presently. Logan was born normal. The seizures started

> >>

> > at 6

> >

> >>>months old. So, are we supposed to just stand by and watch him

> >>>suffer

> >>>from the seizues and horrible meds. We are losing hope. Does

> >>

> > anyone

> >

> >>>have any other ideas or things that they have tried? I cannot

see

> >>>when in the 21st century that we can't help him.

> >>>I am gratful for anyone's advise.

> >>>Laurie mom to Logan(2)

> >>>

> >>>

> >>>

> >>>

[Guest guest]

Laurie,

Your family is terrific. You have been through terrible times, I know.

We are pulling for you here.

I guess that Logan is very inactive, right. Those calories have to be a

record low. No wonder you have such a rough time. You are far below the

average calories on the diet. What about protein? Is that at the lowest

limit as well? And with that high ratio on top of it? Your kid is in the

Olympics!

When we were at 4.5:1 and 5:1, I increased vitamins and minerals by 50%.

I just thought she was getting nothing from the food. Are you watching

closely for hair loss, etc.? Do you get regular blood tests?

You are smart to spread the meals out like that. It is very important.

Same thing for fluids, spread them out over the day.

He lost 1 pound so far? Are you trying for weight loss or constant

weight? If you want constant, then maybe go up by 25 or 50 calories and

see what happens. You have to really measure weight accurately with that

limited calorie level. Do you have accurate scales? I really only trust

the doctor's office with the weights and I hold my daughter, then weigh

myself and take the difference.

You should consider weaning the meds slowly because of nearly everyone's

experience here. Even then, you should expect to see some seizures when

you reduce the meds.

I am amazed at your perseverance on the diet! You are fantastic!

Keep fighting,

Bill

peteymedic1 wrote:

> Bill, Thanks for your help. Most of the things you mentioned we have

> made adjustments to. To clear up Logan is on about 450 calories. The

> ratio is 4.3-4.5 to 1. Because there isn't any fruits and veg at the

> moment. We have vit and cal mag zinc. He is " going " every 3 days. I

> made his meals 1/2 meals and spread them out. Otherwise is was too

> long between feeding. This seeems to be working the best. I measure

> and keep track of everything and I mean everything. From diet to mood

> to activity and etc.

> Logan is having a repeat MRI tomorrow. His other one was when he was

> 9 months old. He is 26 months old now. Pete and I decided that if it

> is negative then we are going to try the diet without meds. It

> absolutely cannot be any worse than it is now. He has been seizure

> and med free before. Our biggest mistake was the calories. He did

> lose 1 pound so far. Maybe it will work. Thanks again. I look forward

> to hearing from you. It helps me alot.

> Laurie

>

[Guest guest]

Laurie,

Your family is terrific. You have been through terrible times, I know.

We are pulling for you here.

I guess that Logan is very inactive, right. Those calories have to be a

record low. No wonder you have such a rough time. You are far below the

average calories on the diet. What about protein? Is that at the lowest

limit as well? And with that high ratio on top of it? Your kid is in the

Olympics!

When we were at 4.5:1 and 5:1, I increased vitamins and minerals by 50%.

I just thought she was getting nothing from the food. Are you watching

closely for hair loss, etc.? Do you get regular blood tests?

You are smart to spread the meals out like that. It is very important.

Same thing for fluids, spread them out over the day.

He lost 1 pound so far? Are you trying for weight loss or constant

weight? If you want constant, then maybe go up by 25 or 50 calories and

see what happens. You have to really measure weight accurately with that

limited calorie level. Do you have accurate scales? I really only trust

the doctor's office with the weights and I hold my daughter, then weigh

myself and take the difference.

You should consider weaning the meds slowly because of nearly everyone's

experience here. Even then, you should expect to see some seizures when

you reduce the meds.

I am amazed at your perseverance on the diet! You are fantastic!

Keep fighting,

Bill

peteymedic1 wrote:

> Bill, Thanks for your help. Most of the things you mentioned we have

> made adjustments to. To clear up Logan is on about 450 calories. The

> ratio is 4.3-4.5 to 1. Because there isn't any fruits and veg at the

> moment. We have vit and cal mag zinc. He is " going " every 3 days. I

> made his meals 1/2 meals and spread them out. Otherwise is was too

> long between feeding. This seeems to be working the best. I measure

> and keep track of everything and I mean everything. From diet to mood

> to activity and etc.

> Logan is having a repeat MRI tomorrow. His other one was when he was

> 9 months old. He is 26 months old now. Pete and I decided that if it

> is negative then we are going to try the diet without meds. It

> absolutely cannot be any worse than it is now. He has been seizure

> and med free before. Our biggest mistake was the calories. He did

> lose 1 pound so far. Maybe it will work. Thanks again. I look forward

> to hearing from you. It helps me alot.

> Laurie

>

[Guest guest]

Bill,

Logan was at 825 calories and phenobarb. He has less activity than

ever. That is why the calories were reduced. Protein is the correct

for his weight and age. The phenobarb slowed him down. Today he

climbed the stairs and cruzed the couch. Of course it all ended in a

seizure. But it was some amount of movement. His hair is noticably

thinner. His hair was ok last nov/dec when we were giving him the

brazil nuts. We will get back to figuring that in at some point. We

weigh him 4 times a week and measure him once a month. We have a

scale that weighs up to 44 lbs/ 22 kg in 1oz/10gram increments. It

seems to be a good one. We continue to compare it with the doctors

office. He also has regular blood tests. He lost the 1 pound he

gained and has stayed the same for 1 1/2 weeks.

Thanks and I hope things are well with you and your daughter. Last I

read you were weaning the diet.

Laurie

> > Bill, Thanks for your help. Most of the things you mentioned we

have

> > made adjustments to. To clear up Logan is on about 450 calories.

The

> > ratio is 4.3-4.5 to 1. Because there isn't any fruits and veg at

the

> > moment. We have vit and cal mag zinc. He is " going " every 3 days.

I

> > made his meals 1/2 meals and spread them out. Otherwise is was

too

> > long between feeding. This seeems to be working the best. I

measure

> > and keep track of everything and I mean everything. From diet to

mood

> > to activity and etc.

> > Logan is having a repeat MRI tomorrow. His other one was when he

was

> > 9 months old. He is 26 months old now. Pete and I decided that if

it

> > is negative then we are going to try the diet without meds. It

> > absolutely cannot be any worse than it is now. He has been

seizure

> > and med free before. Our biggest mistake was the calories. He did

> > lose 1 pound so far. Maybe it will work. Thanks again. I look

forward

> > to hearing from you. It helps me alot.

> > Laurie

> >