Re: When is it time to call it quits??

[Guest guest]

Bill,

Thanks for your well thought out response. Your advice is always well taken

here. He was on Flagyl because of being constipated and impacted for so

long the gastro put him on because she said that he more than likely had

bacteria and infection from constipation and that alone could be increasing his

seizures. Our neuro agreed. She is going to biopsy his colon and other

tissues

when she does his tests to see if there is any bacteria and also check him

for allergies

There is no doubt to me that the keto diet does work for . It

also gave him many more food choices such as fruit and popcorn. His ketones

have stayed large on the Atkins diet also. He had good seizure control on the

Atkins but it had to be including the fats like the keto.

I'm not quite sure what to do or where to start but I appreciate you

thoughts.

THanks

[Guest guest]

I just got the tape of the Dateline show from last year with Charlie on

it back from the Epilepsy Association. I watched it and it is chilling

if you, like us, are weaning the diet. If you remember, Charlie was on

the diet for 2 years and became seizure free. He weaned the diet. It

took 3 attempts and over 4 years to get off the diet. They had to go

back on the diet 3 times and had several episodes of many seizures and

even trips to the ER; it got so bad.

Just like being on the diet, nothing much is known about how to wean

from the diet. Mostly it just trial and error. Do what works. If it

doesn't, go back to where you were. It only takes about a month or 2 to

make these rather modest changes to the diet!

You may want to send an e-mail directly to Charlie Foundation and ask

about your situation. I don't whether or how they would respond, but it

is worth a try.

Unfortunately, there are no cures for our children. We do the best we

can. But I wouldn't trust any medical people who tell you that your

child is cured. The best we can hope for is a treatment that works most

of the time and doesn't have too many bad side effects.

I would imagine that the Atkins diet has some problems just like the

Keto diet. Maybe it is even worse for constipation with the high amounts

of protein. Does it matter what the source is? Red meat, chicken, fish,

legumes? Both the Atkins and Keto need supplementing with a good vitamin

and mineral supplement. I personally wonder whether a lot of long term

problems are related to this.

For constipation, giving adequate water and supplementing with magnesium

seem to be the best methods. If the child is imobile, giving massage and

exercise is helpful. If it goes too long, then stronger intervention is

absolutely required.

Depakote is very bad combined with the Keto diet. Maybe it is similarly

bad with the Atkins because with both diets, ketones are present and

they are acidic. Isn't that the problem with depakote? The acidity?

I don't really see any advantage to the Atkins diet over a properly

administered Keto diet. Maybe Atkins is not as good and has its own bad

side effects. There just isn't much knowledge available.

If you do go back to keto, certainly don't do 4:1. You know from

experience that that is not what you need for your individual child. You

still have to restrict calories for the diet to work. To see if you need

the diet and to see if the diet will be effective, you should probably

do a 24 hour fast to get started. Maybe not that long, if you already

have ketones present. If you see high ketosis, you can start feeding and

give orange or apple juice to correct the symptoms.

If you have the ratio and calories right and ketones are high, your

child shouldn't be hungry. You will still have the problems from the

depokote. It doesn't seem to be any good when combined with the diet.

When you say he was on Flagyl for bacteria, do you mean that he was

sick? Was he not eating as much? If so, to me, that is a sign that the

keto diet with the correct calories would work to control seizures. For

us, that was a very strong indication that we should try the keto diet.

Theses are my thoughts which are not from a medical person, just a

parent with some experience (3.5 years) on the diet and some history of

being with other parents here.

Bill

lloydandleslie@... wrote:

>

> Hi

>

> Please, I need some help here. I'm really confused about what is going on

> with my son.

> We are in a big mess with and to be honest. I just don't even

> know what is up anymore. I feel like I (or we/he) have lost control.

>

> For those of you that don't know our history, has head drops and

> absence seizures. He was having 200 or more daily at this worst. After

> trying all meds available, we started him on the diet at 4:1 at

Hopkins 4

> years ago (our neuro here in Indianapolis didn't believe in the diet). Due

to

> him getting severly ketotoic, anorexic and loisng toom uch weight because of

> depakote toxicity, we had to pull him off the diet and allow him to gain

> wieght. 7 months later, we started seeing Dr. Chez in Chicago and he put him

on

> the diet again at 4:1 and reduced his depakote. Again, he got anorexic and

> highly ketotic. So, we went down to 2:5 for awhile and then to 2:1 ratio.

> He immediately tolerated the lower ratio and had seizure control. We tried

to

> wean the depakote completely on this ratio and always had trouble when we

> got down to the last 2. Looking back, I wish we would have rode out the wean

> to give him the chance withoutmeds. He was on 2:1 for 2 years and finally

> last November 2003 had enough of the diet. He started digging in the trash

and

> sneaking food and coming very violent about food. His seizures then came

> back a little bit (not near like they were). We took him to Cleveland clinic

> for a 2nd opinion due to Dr. Chez being so expensive and they took him off

all

> meds for 7 days in the hospital and said his EEg was nroaml and he was cured.

> Keep in mind, we saw him having seizures in the waiting room prior to EEg

> being hooked up. They said even if the seizures would return, he did not need

> to be on the diet and should be able to get control with meds.

>

> Well, one month later, we took him off the diet and meds and he lasted about

> 3 weeks without seizures. It was great but then they came back slowly. Dr.

> Chez did another EEG and confirmed that his EEG was abnormal again. So he

> started him on the Atkins diet. He siad he thought he was tapped out on the

> keto diet and not growing etc. He also added Felbatol. Well, he did good

for

> about 6 months and then this past summer he became really constipated and it

> came to a head this past July when he ended up nearly obstructed and really

> constipated. We started a high dosage Miralax regimen which gave him

> diarrhea bad and his seizures have gotten increasingly worse. Its been a mess

and

> we've tried many things to get him " normal " with his bowels but can't seem to

> get it right. He has been on Flagyl for bacteria and got better for about a

> week with seizures. Now, ther are here again and he has a rash which is

> called Mollousum which comes from his immune system being suppressed. Common

in

> HIV patients. He had several head drops the last 2 days agian since the rash

> started.

>

> My mom instinct tells me that his body is saying " I've had enough of this

> diet " but my head knows that his options are limited with what else is out

there

> for him. He is having a coloncopy and endoscopy and 2 day video eeg which

> I don't really care about any more. Yes, we know he is having seizures. He

> is back on depakote also and we increased it yesterday.

>

> He is still on the Atkins diet and is starving all of the time. He begs for

> food constantly. He is having many seizures (head drops). I don't think he

> will do the keto diet anymore. He is a very strong willed child and he

> loves food. Its an obsession. Its awful.

>

> Any thoughts? Red flags? Ideas? Please I welcome any input.

>

> Thanks

> mom to 6, 4 and baby boy due in Feb.

>

>

>

[Guest guest]

I just got the tape of the Dateline show from last year with Charlie on

it back from the Epilepsy Association. I watched it and it is chilling

if you, like us, are weaning the diet. If you remember, Charlie was on

the diet for 2 years and became seizure free. He weaned the diet. It

took 3 attempts and over 4 years to get off the diet. They had to go

back on the diet 3 times and had several episodes of many seizures and

even trips to the ER; it got so bad.

Just like being on the diet, nothing much is known about how to wean

from the diet. Mostly it just trial and error. Do what works. If it

doesn't, go back to where you were. It only takes about a month or 2 to

make these rather modest changes to the diet!

You may want to send an e-mail directly to Charlie Foundation and ask

about your situation. I don't whether or how they would respond, but it

is worth a try.

Unfortunately, there are no cures for our children. We do the best we

can. But I wouldn't trust any medical people who tell you that your

child is cured. The best we can hope for is a treatment that works most

of the time and doesn't have too many bad side effects.

I would imagine that the Atkins diet has some problems just like the

Keto diet. Maybe it is even worse for constipation with the high amounts

of protein. Does it matter what the source is? Red meat, chicken, fish,

legumes? Both the Atkins and Keto need supplementing with a good vitamin

and mineral supplement. I personally wonder whether a lot of long term

problems are related to this.

For constipation, giving adequate water and supplementing with magnesium

seem to be the best methods. If the child is imobile, giving massage and

exercise is helpful. If it goes too long, then stronger intervention is

absolutely required.

Depakote is very bad combined with the Keto diet. Maybe it is similarly

bad with the Atkins because with both diets, ketones are present and

they are acidic. Isn't that the problem with depakote? The acidity?

I don't really see any advantage to the Atkins diet over a properly

administered Keto diet. Maybe Atkins is not as good and has its own bad

side effects. There just isn't much knowledge available.

If you do go back to keto, certainly don't do 4:1. You know from

experience that that is not what you need for your individual child. You

still have to restrict calories for the diet to work. To see if you need

the diet and to see if the diet will be effective, you should probably

do a 24 hour fast to get started. Maybe not that long, if you already

have ketones present. If you see high ketosis, you can start feeding and

give orange or apple juice to correct the symptoms.

If you have the ratio and calories right and ketones are high, your

child shouldn't be hungry. You will still have the problems from the

depokote. It doesn't seem to be any good when combined with the diet.

When you say he was on Flagyl for bacteria, do you mean that he was

sick? Was he not eating as much? If so, to me, that is a sign that the

keto diet with the correct calories would work to control seizures. For

us, that was a very strong indication that we should try the keto diet.

Theses are my thoughts which are not from a medical person, just a

parent with some experience (3.5 years) on the diet and some history of

being with other parents here.

Bill

lloydandleslie@... wrote:

>

> Hi

>

> Please, I need some help here. I'm really confused about what is going on

> with my son.

> We are in a big mess with and to be honest. I just don't even

> know what is up anymore. I feel like I (or we/he) have lost control.

>

> For those of you that don't know our history, has head drops and

> absence seizures. He was having 200 or more daily at this worst. After

> trying all meds available, we started him on the diet at 4:1 at

Hopkins 4

> years ago (our neuro here in Indianapolis didn't believe in the diet). Due

to

> him getting severly ketotoic, anorexic and loisng toom uch weight because of

> depakote toxicity, we had to pull him off the diet and allow him to gain

> wieght. 7 months later, we started seeing Dr. Chez in Chicago and he put him

on

> the diet again at 4:1 and reduced his depakote. Again, he got anorexic and

> highly ketotic. So, we went down to 2:5 for awhile and then to 2:1 ratio.

> He immediately tolerated the lower ratio and had seizure control. We tried

to

> wean the depakote completely on this ratio and always had trouble when we

> got down to the last 2. Looking back, I wish we would have rode out the wean

> to give him the chance withoutmeds. He was on 2:1 for 2 years and finally

> last November 2003 had enough of the diet. He started digging in the trash

and

> sneaking food and coming very violent about food. His seizures then came

> back a little bit (not near like they were). We took him to Cleveland clinic

> for a 2nd opinion due to Dr. Chez being so expensive and they took him off

all

> meds for 7 days in the hospital and said his EEg was nroaml and he was cured.

> Keep in mind, we saw him having seizures in the waiting room prior to EEg

> being hooked up. They said even if the seizures would return, he did not need

> to be on the diet and should be able to get control with meds.

>

> Well, one month later, we took him off the diet and meds and he lasted about

> 3 weeks without seizures. It was great but then they came back slowly. Dr.

> Chez did another EEG and confirmed that his EEG was abnormal again. So he

> started him on the Atkins diet. He siad he thought he was tapped out on the

> keto diet and not growing etc. He also added Felbatol. Well, he did good

for

> about 6 months and then this past summer he became really constipated and it

> came to a head this past July when he ended up nearly obstructed and really

> constipated. We started a high dosage Miralax regimen which gave him

> diarrhea bad and his seizures have gotten increasingly worse. Its been a mess

and

> we've tried many things to get him " normal " with his bowels but can't seem to

> get it right. He has been on Flagyl for bacteria and got better for about a

> week with seizures. Now, ther are here again and he has a rash which is

> called Mollousum which comes from his immune system being suppressed. Common

in

> HIV patients. He had several head drops the last 2 days agian since the rash

> started.

>

> My mom instinct tells me that his body is saying " I've had enough of this

> diet " but my head knows that his options are limited with what else is out

there

> for him. He is having a coloncopy and endoscopy and 2 day video eeg which

> I don't really care about any more. Yes, we know he is having seizures. He

> is back on depakote also and we increased it yesterday.

>

> He is still on the Atkins diet and is starving all of the time. He begs for

> food constantly. He is having many seizures (head drops). I don't think he

> will do the keto diet anymore. He is a very strong willed child and he

> loves food. Its an obsession. Its awful.

>

> Any thoughts? Red flags? Ideas? Please I welcome any input.

>

> Thanks

> mom to 6, 4 and baby boy due in Feb.

>

>

>

[Guest guest]

After 3 days with no bowel movement, we start to give milk of magnesia

in increasing amounts for a day or 2, i.e. with each meal. We used to

give milk of magnesia every day, but now we are weaning the diet, so

there is a lot more fibre, but it is still an issue.

All the Best,

Bill

lloydandleslie@... wrote:

> Bill,

> Thanks for your well thought out response. Your advice is always well taken

> here. He was on Flagyl because of being constipated and impacted for so

> long the gastro put him on because she said that he more than likely had

> bacteria and infection from constipation and that alone could be increasing

his

> seizures. Our neuro agreed. She is going to biopsy his colon and other

tissues

> when she does his tests to see if there is any bacteria and also check him

> for allergies

>

> There is no doubt to me that the keto diet does work for . It

> also gave him many more food choices such as fruit and popcorn. His ketones

> have stayed large on the Atkins diet also. He had good seizure control on

the

> Atkins but it had to be including the fats like the keto.

>

> I'm not quite sure what to do or where to start but I appreciate you

> thoughts.

>

> THanks

>

>

>

>

[Guest guest]

After 3 days with no bowel movement, we start to give milk of magnesia

in increasing amounts for a day or 2, i.e. with each meal. We used to

give milk of magnesia every day, but now we are weaning the diet, so

there is a lot more fibre, but it is still an issue.

All the Best,

Bill

lloydandleslie@... wrote:

> Bill,

> Thanks for your well thought out response. Your advice is always well taken

> here. He was on Flagyl because of being constipated and impacted for so

> long the gastro put him on because she said that he more than likely had

> bacteria and infection from constipation and that alone could be increasing

his

> seizures. Our neuro agreed. She is going to biopsy his colon and other

tissues

> when she does his tests to see if there is any bacteria and also check him

> for allergies

>

> There is no doubt to me that the keto diet does work for . It

> also gave him many more food choices such as fruit and popcorn. His ketones

> have stayed large on the Atkins diet also. He had good seizure control on

the

> Atkins but it had to be including the fats like the keto.

>

> I'm not quite sure what to do or where to start but I appreciate you

> thoughts.

>

> THanks

>

>

>

>

[Guest guest]

After 3 days with no bowel movement, we start to give milk of magnesia

in increasing amounts for a day or 2, i.e. with each meal. We used to

give milk of magnesia every day, but now we are weaning the diet, so

there is a lot more fibre, but it is still an issue.

All the Best,

Bill

lloydandleslie@... wrote:

> Bill,

> Thanks for your well thought out response. Your advice is always well taken

> here. He was on Flagyl because of being constipated and impacted for so

> long the gastro put him on because she said that he more than likely had

> bacteria and infection from constipation and that alone could be increasing

his

> seizures. Our neuro agreed. She is going to biopsy his colon and other

tissues

> when she does his tests to see if there is any bacteria and also check him

> for allergies

>

> There is no doubt to me that the keto diet does work for . It

> also gave him many more food choices such as fruit and popcorn. His ketones

> have stayed large on the Atkins diet also. He had good seizure control on

the

> Atkins but it had to be including the fats like the keto.

>

> I'm not quite sure what to do or where to start but I appreciate you

> thoughts.

>

> THanks

>

>

>

>

[Guest guest]

Hi ,

Boy, you have been through a lot, and for a long time, too. I

hope your son can hang in there for a little bit longer on the diet,

because it seems like a very good option for you.

I talked to Charlie's Dad last January. He thinks the key to

their successful wean (after all the unsuccessful ones) was weaning

very, very slowly. Call the foundation, and you will probably get

to talk directly to him. He certainly has the experience of years

on the diet.

The other thing I keep harping on in past posts is the wonders of

Mirilax. It works best before the children are constipated. Once

constipate, it really isn't going to clear them. Diarehha will just

seep around the blockage. I put a small amount (1/4 of a capful at

most) in my son's water every mornining. He doesn't even know he

takes it. He was always prone to constipation, especially on some

of the medications, but even before that. So, I didn't want to mess

around. It has worked great for him, as he has experienced very

little constipation, even when he was at the 4.5:1 ratio.

A Harvard trained gastro-Doc friend of mine says Mirilax is

great. All my pediatrician friends say so, too. It does not work

like most laxatives, so it is not addictive.

Also, you are very fortunate to be on a 2:1 ratio. Maybe your

son needs some variety in his diet. YOu have a lot of

flexibility.

Six years old might just be a difficult time for him to be on the

diet. If you can get him through this period, maybe he will coast

again later on. I know the growth is an issue. But, I think

the 'curing' him of seizures is more important. (And I do believe

kids can be cured.)

About EEGs and seizures. A normal EEG even when you see a

seizure might mean that the seizure is not really a seizure. That

is what we found out. On keto, my son started having a seizure type

that he had never had before, we assumed it was just a new seizure

type, but when the EEG came out normal, and when the doctor examined

him during one that very conveniently occured in his office, he

concluded that they were not seizures, but behvioral episodes. Like

seizures, my son had no control over them (he wasn't faking). They

used to be called " psuedo siezures " and are more common in people

with a history of real seizures than in the seizure free population.

I hope some of this info helps.

Gretchen

> >

> > Hi

> >

> > Please, I need some help here. I'm really confused about what

is going on

> > with my son.

> > We are in a big mess with and to be honest. I just

don't even

> > know what is up anymore. I feel like I (or we/he) have lost

control.

> >

> > For those of you that don't know our history, has

head drops and

> > absence seizures. He was having 200 or more daily at this worst.

After

> > trying all meds available, we started him on the diet at 4:1

at Hopkins 4

> > years ago (our neuro here in Indianapolis didn't believe in the

diet). Due to

> > him getting severly ketotoic, anorexic and loisng toom uch

weight because of

> > depakote toxicity, we had to pull him off the diet and allow

him to gain

> > wieght. 7 months later, we started seeing Dr. Chez in Chicago

and he put him on

> > the diet again at 4:1 and reduced his depakote. Again, he got

anorexic and

> > highly ketotic. So, we went down to 2:5 for awhile and then to

2:1 ratio.

> > He immediately tolerated the lower ratio and had seizure

control. We tried to

> > wean the depakote completely on this ratio and always had

trouble when we

> > got down to the last 2. Looking back, I wish we would have

rode out the wean

> > to give him the chance withoutmeds. He was on 2:1 for 2 years

and finally

> > last November 2003 had enough of the diet. He started digging

in the trash and

> > sneaking food and coming very violent about food. His seizures

then came

> > back a little bit (not near like they were). We took him to

Cleveland clinic

> > for a 2nd opinion due to Dr. Chez being so expensive and they

took him off all

> > meds for 7 days in the hospital and said his EEg was nroaml and

he was cured.

> > Keep in mind, we saw him having seizures in the waiting room

prior to EEg

> > being hooked up. They said even if the seizures would return, he

did not need

> > to be on the diet and should be able to get control with meds.

> >

> > Well, one month later, we took him off the diet and meds and he

lasted about

> > 3 weeks without seizures. It was great but then they came back

slowly. Dr.

> > Chez did another EEG and confirmed that his EEG was abnormal

again. So he

> > started him on the Atkins diet. He siad he thought he was

tapped out on the

> > keto diet and not growing etc. He also added Felbatol. Well,

he did good for

> > about 6 months and then this past summer he became really

constipated and it

> > came to a head this past July when he ended up nearly

obstructed and really

> > constipated. We started a high dosage Miralax regimen which

gave him

> > diarrhea bad and his seizures have gotten increasingly worse.

Its been a mess and

> > we've tried many things to get him " normal " with his bowels but

can't seem to

> > get it right. He has been on Flagyl for bacteria and got better

for about a

> > week with seizures. Now, ther are here again and he has a rash

which is

> > called Mollousum which comes from his immune system being

suppressed. Common in

> > HIV patients. He had several head drops the last 2 days agian

since the rash

> > started.

> >

> > My mom instinct tells me that his body is saying " I've had

enough of this

> > diet " but my head knows that his options are limited with what

else is out there

> > for him. He is having a coloncopy and endoscopy and 2 day

video eeg which

> > I don't really care about any more. Yes, we know he is having

seizures. He

> > is back on depakote also and we increased it yesterday.

> >

> > He is still on the Atkins diet and is starving all of the

time. He begs for

> > food constantly. He is having many seizures (head drops). I

don't think he

> > will do the keto diet anymore. He is a very strong willed

child and he

> > loves food. Its an obsession. Its awful.

> >

> > Any thoughts? Red flags? Ideas? Please I welcome any input.

> >

> > Thanks

> > mom to 6, 4 and baby boy due in Feb.

> >

> >

> >

[Guest guest]

,

Where do you live? We live in the Carmel/Westfield area. We saw Dr.

at Riley for awhile but he was not in favor of putting on

the

diet. He also told me that he needed to be " put in a corner " and might end up

in an instituation. He was 2 at the time. It hard for me to want to go

back there even though we know that is gone.

How old is your daughter? won't eat sald. I keep praying for

the day when he does becuase that would be awesome. Many great salad choices.

He is pretty good about his veggies though.

We go in next week for more EEGs. 1 to 2 days. We are at St

Childrens now with Dr Castellanos. He is not big on the diet so I'm a little

nervous. I can tell you that I would go back to the diet any day over watching

my

child regress again with seizures and meds.

Do you have a dietician helping you at Rileyor are you doing your own meals?

We always did our own. What supplements have you used with the diet? Any

meds on that low of ratio?

THanks

[Guest guest]

,

Where do you live? We live in the Carmel/Westfield area. We saw Dr.

at Riley for awhile but he was not in favor of putting on

the

diet. He also told me that he needed to be " put in a corner " and might end up

in an instituation. He was 2 at the time. It hard for me to want to go

back there even though we know that is gone.

How old is your daughter? won't eat sald. I keep praying for

the day when he does becuase that would be awesome. Many great salad choices.

He is pretty good about his veggies though.

We go in next week for more EEGs. 1 to 2 days. We are at St

Childrens now with Dr Castellanos. He is not big on the diet so I'm a little

nervous. I can tell you that I would go back to the diet any day over watching

my

child regress again with seizures and meds.

Do you have a dietician helping you at Rileyor are you doing your own meals?

We always did our own. What supplements have you used with the diet? Any

meds on that low of ratio?

THanks

[Guest guest]

THanks for your support. I know that we are all in the same boat here with

our own struggles and challenges. Interestingly, last night I checked his

ketones and they were TRACE. I was like-BINGO. He has always been ketotic and

large even on the Atkins diet. THis has to have some significance. Don't

know why though.

I know that the keto diet is always an option that we may have to go back to

and if so, we will just have to do it. The seizures are much worse than the

diet.

Thanks again

[Guest guest]

Brnda,

FYi. His ketones tonight were large as they could register. Now go figure.

What is up with that?

[Guest guest]

My son is extremely strong-willed, too. That was my main fear in

starting keto. In fact, until keto I don't think he had ever lost

an argument with us. So stubborn; just like his dad. I know it

might be hard for a six year old, but I think the only way we were

successful in combating the stubborness with the diet was through

reason. We reasoned with him about having no other options ( " would

I put you on this horrendous diet if there were any other option? "

And we reasoned with him about how well he could do in school

without meds and seizures. At six, we would have had an extremely

difficult time of it. We really had to know that there were no

other options, and that is what keeps me from feeling bitter towards

previous doctors who refused to consider keto as an option for him.

I take it your son is off keto, now? Or is he still on it but

cheating?

Gretchen

> Gretchen,

> Thanks for your post. We are using Mirlax now and it is

working. I just

> have to get it right. So far, no diarhhea. THats good. THe GI

wants his

> stools to be almost like diarhhea for 2 months. I think of

Charlie often and

> think that he is my inspiration. It took a long time but he did

get off and off

> all meds. After this long of time, I still know that the diet

may be the

> best choice for us to go back to. We are waiting for the results

of the tests

> and will make a decision in the next couple of weeks.

>

> I have heard the theory of pseudo seizures and that is possible.

However,

> when they get them on an EEG they always say they are

myoclonic " drops " . I

> hate those buggers.

> My hubby and i got out the seizure videos 2 nights ago and

waatched him. He

> was sooooo slow back then from the drugs and his seizures look

exactly the

> same. He has come so far thanks to the diet and I know it saved

him. It may

> be his only option. I'm glad that he might have it but if he

cheats all of

> the time, it won't work. He is very strong willed and OCD.

Obsessed with

> food and trucks.

>

> Anyways

> THanks for your thoughts

>

>

>

>

>

>

[Guest guest]

My son is extremely strong-willed, too. That was my main fear in

starting keto. In fact, until keto I don't think he had ever lost

an argument with us. So stubborn; just like his dad. I know it

might be hard for a six year old, but I think the only way we were

successful in combating the stubborness with the diet was through

reason. We reasoned with him about having no other options ( " would

I put you on this horrendous diet if there were any other option? "

And we reasoned with him about how well he could do in school

without meds and seizures. At six, we would have had an extremely

difficult time of it. We really had to know that there were no

other options, and that is what keeps me from feeling bitter towards

previous doctors who refused to consider keto as an option for him.

I take it your son is off keto, now? Or is he still on it but

cheating?

Gretchen

> Gretchen,

> Thanks for your post. We are using Mirlax now and it is

working. I just

> have to get it right. So far, no diarhhea. THats good. THe GI

wants his

> stools to be almost like diarhhea for 2 months. I think of

Charlie often and

> think that he is my inspiration. It took a long time but he did

get off and off

> all meds. After this long of time, I still know that the diet

may be the

> best choice for us to go back to. We are waiting for the results

of the tests

> and will make a decision in the next couple of weeks.

>

> I have heard the theory of pseudo seizures and that is possible.

However,

> when they get them on an EEG they always say they are

myoclonic " drops " . I

> hate those buggers.

> My hubby and i got out the seizure videos 2 nights ago and

waatched him. He

> was sooooo slow back then from the drugs and his seizures look

exactly the

> same. He has come so far thanks to the diet and I know it saved

him. It may

> be his only option. I'm glad that he might have it but if he

cheats all of

> the time, it won't work. He is very strong willed and OCD.

Obsessed with

> food and trucks.

>

> Anyways

> THanks for your thoughts

>

>

>

>

>

>

[Guest guest]

My son is extremely strong-willed, too. That was my main fear in

starting keto. In fact, until keto I don't think he had ever lost

an argument with us. So stubborn; just like his dad. I know it

might be hard for a six year old, but I think the only way we were

successful in combating the stubborness with the diet was through

reason. We reasoned with him about having no other options ( " would

I put you on this horrendous diet if there were any other option? "

And we reasoned with him about how well he could do in school

without meds and seizures. At six, we would have had an extremely

difficult time of it. We really had to know that there were no

other options, and that is what keeps me from feeling bitter towards

previous doctors who refused to consider keto as an option for him.

I take it your son is off keto, now? Or is he still on it but

cheating?

Gretchen

> Gretchen,

> Thanks for your post. We are using Mirlax now and it is

working. I just

> have to get it right. So far, no diarhhea. THats good. THe GI

wants his

> stools to be almost like diarhhea for 2 months. I think of

Charlie often and

> think that he is my inspiration. It took a long time but he did

get off and off

> all meds. After this long of time, I still know that the diet

may be the

> best choice for us to go back to. We are waiting for the results

of the tests

> and will make a decision in the next couple of weeks.

>

> I have heard the theory of pseudo seizures and that is possible.

However,

> when they get them on an EEG they always say they are

myoclonic " drops " . I

> hate those buggers.

> My hubby and i got out the seizure videos 2 nights ago and

waatched him. He

> was sooooo slow back then from the drugs and his seizures look

exactly the

> same. He has come so far thanks to the diet and I know it saved

him. It may

> be his only option. I'm glad that he might have it but if he

cheats all of

> the time, it won't work. He is very strong willed and OCD.

Obsessed with

> food and trucks.

>

> Anyways

> THanks for your thoughts

>

>

>

>

>

>

[Guest guest]

,

I am sorry I did not respond to this sooner. I tend to get behind on my

list mail. I live in ville and We see Dr. Patel at Riley. Dr. Patel

does the " Keto Clinic " at Riley. We saw her before doing the diet and she

really pushed us into as a last resort for . When we started the

diet the doctor on service in the hospital was Dr. needless to say

we had a rocky start. Here we are in the hospital and our daughter has not

eaten in a day and a half and he is telling us we are doing the wrong thing

and we are just cruel. He further went on to tell us doctor Patel had not

maximized all our medicine options, which was not the case. I called Dr.

Garg the head of neurology and talked to him about the situation. Shortly

after that he left. I can see why you have a bad feeling about Riley after

dealing with him.

We have been doing the diet for over 4 years and we are on our 3rd

dietician. The second one was great she really knew the diet. We worked

really well together. This one is o.k. but young and learning. I do all my

own meal plans with the Stanford meal planner. We have used lettuce as a

free food and really likes it.

is still on meds. We were down to 2 meds and low dose of the pheno,

but as we tried to reduce the ratio we have had to add meds. is

really tired of the diet and cheats as often as she can. We have a good

balance of control with meds and the diet we never had any kind of control

with out the diet. The diet has been such a blessing for our family.

Seizure control gives you such a normal life.

I can never remember this dietician's name. I will find out and e-mail you.

Re: When is it time to call it quits??

,

Where do you live? We live in the Carmel/Westfield area. We saw Dr.

at Riley for awhile but he was not in favor of putting

on the

diet. He also told me that he needed to be " put in a corner " and might end

up

in an instituation. He was 2 at the time. It hard for me to want to go

back there even though we know that is gone.

How old is your daughter? won't eat sald. I keep praying for

the day when he does becuase that would be awesome. Many great salad

choices.

He is pretty good about his veggies though.

We go in next week for more EEGs. 1 to 2 days. We are at St

Childrens now with Dr Castellanos. He is not big on the diet so I'm a

little

nervous. I can tell you that I would go back to the diet any day over

watching my

child regress again with seizures and meds.

Do you have a dietician helping you at Rileyor are you doing your own

meals?

We always did our own. What supplements have you used with the diet? Any

meds on that low of ratio?

THanks