RE: a little disappointing

[Guest guest]

Keep going. Don't get discouraged. I think the diet " sets in " to the

system somewhere around the 3-4 week mark for some. There was a child who

initiated the diet with my daughter who had no results until the 6th week.

Be patient, be faithful. It is great that his ketones are high and you are

hitting your stride with the measuring and him with eating. Other people

will likely chime in with questions about other urine test readings. They

are better with tweaking the diet. Sometimes it is not just ketone level

that can impact him. I'll pray and let them tweak.

Love

Ann

a little disappointing

Hey everyone....just writing to vent a little I guess or voice my concerns.

We have only been on the diet for a week and a half and Im NOT expecting

miracles here....But, Austin had his weekly seizure this morning....Now, I

know to ALOT of you, a weekly seizure is minimal but its what we have to

deal with and to us its too much. Now like I said, Im not expecting

miracles but I know alot of posts that I have read alot of your children had

instant results with at least reduction in seizures so I guess what I was

hoping for was at least a longer span between Austins seizures (ultimately I

was hoping for NONE but I know better not to get my hopes up) But, I guess

I did get my hopes up a little by hoping that the diet would show some

results right away.

Am I wrong in feeling this way? Should I not expect so much so quick? I

have a bad outlook on things because of having my hopes shattered

sooooooooooooooooooo many times before but I dont have a bad attitude about

the diet because of it. I am not thinking about giving up at all Im going

to give this a great effort but I guess I just needed some reassurance. His

Ketones have been large ever since we left the hospital. We have been to

the tenth of a gram on everything. I am very exact with it and hes doing

well with eating the foods so I guess because we have been doing so well

that I kind of expected better results.

Well thanks for letting me vent.......This group is great for support and I

guess I just need some reassurance right now. Thanks again.......Tammy

(Austins Mom)

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Keep going. Don't get discouraged. I think the diet " sets in " to the

system somewhere around the 3-4 week mark for some. There was a child who

initiated the diet with my daughter who had no results until the 6th week.

Be patient, be faithful. It is great that his ketones are high and you are

hitting your stride with the measuring and him with eating. Other people

will likely chime in with questions about other urine test readings. They

are better with tweaking the diet. Sometimes it is not just ketone level

that can impact him. I'll pray and let them tweak.

Love

Ann

a little disappointing

Hey everyone....just writing to vent a little I guess or voice my concerns.

We have only been on the diet for a week and a half and Im NOT expecting

miracles here....But, Austin had his weekly seizure this morning....Now, I

know to ALOT of you, a weekly seizure is minimal but its what we have to

deal with and to us its too much. Now like I said, Im not expecting

miracles but I know alot of posts that I have read alot of your children had

instant results with at least reduction in seizures so I guess what I was

hoping for was at least a longer span between Austins seizures (ultimately I

was hoping for NONE but I know better not to get my hopes up) But, I guess

I did get my hopes up a little by hoping that the diet would show some

results right away.

Am I wrong in feeling this way? Should I not expect so much so quick? I

have a bad outlook on things because of having my hopes shattered

sooooooooooooooooooo many times before but I dont have a bad attitude about

the diet because of it. I am not thinking about giving up at all Im going

to give this a great effort but I guess I just needed some reassurance. His

Ketones have been large ever since we left the hospital. We have been to

the tenth of a gram on everything. I am very exact with it and hes doing

well with eating the foods so I guess because we have been doing so well

that I kind of expected better results.

Well thanks for letting me vent.......This group is great for support and I

guess I just need some reassurance right now. Thanks again.......Tammy

(Austins Mom)

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Keep going. Don't get discouraged. I think the diet " sets in " to the

system somewhere around the 3-4 week mark for some. There was a child who

initiated the diet with my daughter who had no results until the 6th week.

Be patient, be faithful. It is great that his ketones are high and you are

hitting your stride with the measuring and him with eating. Other people

will likely chime in with questions about other urine test readings. They

are better with tweaking the diet. Sometimes it is not just ketone level

that can impact him. I'll pray and let them tweak.

Love

Ann

a little disappointing

Hey everyone....just writing to vent a little I guess or voice my concerns.

We have only been on the diet for a week and a half and Im NOT expecting

miracles here....But, Austin had his weekly seizure this morning....Now, I

know to ALOT of you, a weekly seizure is minimal but its what we have to

deal with and to us its too much. Now like I said, Im not expecting

miracles but I know alot of posts that I have read alot of your children had

instant results with at least reduction in seizures so I guess what I was

hoping for was at least a longer span between Austins seizures (ultimately I

was hoping for NONE but I know better not to get my hopes up) But, I guess

I did get my hopes up a little by hoping that the diet would show some

results right away.

Am I wrong in feeling this way? Should I not expect so much so quick? I

have a bad outlook on things because of having my hopes shattered

sooooooooooooooooooo many times before but I dont have a bad attitude about

the diet because of it. I am not thinking about giving up at all Im going

to give this a great effort but I guess I just needed some reassurance. His

Ketones have been large ever since we left the hospital. We have been to

the tenth of a gram on everything. I am very exact with it and hes doing

well with eating the foods so I guess because we have been doing so well

that I kind of expected better results.

Well thanks for letting me vent.......This group is great for support and I

guess I just need some reassurance right now. Thanks again.......Tammy

(Austins Mom)

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Thank You Ann.....thats what I needed to hear. I just got off the phone with

his nutritionist also and she was reassuring too. We go next week for our two

week follow up and she said we will test his blood ketones then. Thanks for

your encouragement. I will keep plugging away and still remain

hopeful.........Tammy

[Guest guest]

Thank You Ann.....thats what I needed to hear. I just got off the phone with

his nutritionist also and she was reassuring too. We go next week for our two

week follow up and she said we will test his blood ketones then. Thanks for

your encouragement. I will keep plugging away and still remain

hopeful.........Tammy

[Guest guest]

Thank You Ann.....thats what I needed to hear. I just got off the phone with

his nutritionist also and she was reassuring too. We go next week for our two

week follow up and she said we will test his blood ketones then. Thanks for

your encouragement. I will keep plugging away and still remain

hopeful.........Tammy

[Guest guest]

Tammy,

I know EXACTLY how you are feeling. We, too, have had our hopes dashed so

many times that it is hard to have faith. But, as I have slowly learned

over the past several months, this diet is not a quick fix. It takes time-

and the time is well worth it.

My daughter actually started having MORE seizures a little bit into the

diet. Thanks to the parents here, we discovered that it was her lamictal

reacting with the diet. Is your child on any meds? That could be the

problem. For us, when the seizures started back up they were happening rght

when her medicine level should have been its highest- I mean like two hours

to the minute after she took her meds. That's where the clue came. We cut

her lamictal and had success stopping the new seizures. Now we're still

fine-tuning and still SLOWLY lowering the lamictal.

I have never been a patient person but this disease and this diet have

joined together to teach me patience.... too bad I am a slow learner!!

BUT I do believe that the patience pays off in the long run. Some parents

here get the best success WAY down the road. Someone pointed out to me that

in Dr. Freeman's book the seizure relief was much better AFTER six months on

the diet than before. That made me feel better-- although it once again

tested my patience. = )

Sooooo, I am sending you big hugs and telling you to hang in there and lean

on this wonderful group for support. It is a long, slow road, but the pay

off at the end is well worth it! I know many of us would gladly trade

brains with our children if there was a way. But since there isn't, all we

can do is keep trying to find the answers! Hang in there! It's gonna get

better!!

, mom to Langan, 19 months old and keto kid since 11/03

>

>Reply-To: ketogenic

>To: ketogenic

>Subject: a little disappointing

>Date: Fri, 27 Feb 2004 17:11:07 -0000

>

_________________________________________________________________

Stay informed on Election 2004 and the race to Super Tuesday.

http://special.msn.com/msn/election2004.armx

[Guest guest]

thank you so much for your encouraging words. I do feel much better already

just knowing that. And, I totally agree, I have thought soooooooo many

times if only I could switch places with him. Hes such a happy little boy!

Well, its just comforting to know that this is perfectly normal and its not

something to really be concerned about. Thats just what I needed to know.

Austin has tell tale signs that he will have a seizure that night and last night

when I saw them, I was so disappointed I wanted to cry. Every little move he

made last night I was checking to see if it was a seizure and everytime it wasnt

I was so thankful....then there it was, like clockwork.......my son has one

seizure a week and its almost to the day every week....sometimes a day or two

over but within 7-9 days he will have it like clockwork. He is on no meds at

this time. We weaned him of his Keppra before we even started the diet. Thanks

again for the support! Its so comforting to know that you all are

here!.............Tammy

[Guest guest]

Tammy,

Like others have said, for many it does take time. What type of seizure(s)

does your son have? Are they in his sleep only?

Rhonda (mom to Shan, age 9, ketokid for 2 years)

Well thanks for letting me vent.......This group is great for

support and I guess I just need some reassurance right now. Thanks

again.......Tammy (Austins Mom)

[Guest guest]

Tammy,

Like others have said, for many it does take time. What type of seizure(s)

does your son have? Are they in his sleep only?

Rhonda (mom to Shan, age 9, ketokid for 2 years)

Well thanks for letting me vent.......This group is great for

support and I guess I just need some reassurance right now. Thanks

again.......Tammy (Austins Mom)

[Guest guest]

Tammy,

Like others have said, for many it does take time. What type of seizure(s)

does your son have? Are they in his sleep only?

Rhonda (mom to Shan, age 9, ketokid for 2 years)

Well thanks for letting me vent.......This group is great for

support and I guess I just need some reassurance right now. Thanks

again.......Tammy (Austins Mom)

[Guest guest]

HI Rhonda........Austin has clusters of tonic/clonic seizures that only occur

during his sleep at night. He is very happy today otherwise....right now he is

jumping around behind me smiling. He just got done with " dinner " and he's all

happy lol.....thanks for your support.........Tammy

[Guest guest]

HI Rhonda........Austin has clusters of tonic/clonic seizures that only occur

during his sleep at night. He is very happy today otherwise....right now he is

jumping around behind me smiling. He just got done with " dinner " and he's all

happy lol.....thanks for your support.........Tammy

[Guest guest]

Hang in there Tammy, like you, when we started the diet with my

little Kristan, I was hoping for instant results. The diet is

helping my daughter as it has brought her seizures down from 150-200

a day to anywhere from 5-10 a day. It takes time and patience and I

now have hope that we will beat this, it's just a matter of fine

tuning.

Satnam, mom to Kristan, 14 months

Keto kid since August 2003

> Hey everyone....just writing to vent a little I guess or voice my

> concerns.

>

> We have only been on the diet for a week and a half and Im NOT

> expecting miracles here....But, Austin had his weekly seizure this

> morning....Now, I know to ALOT of you, a weekly seizure is minimal

> but its what we have to deal with and to us its too much. Now like

> I said, Im not expecting miracles but I know alot of posts that I

> have read alot of your children had instant results with at least

> reduction in seizures so I guess what I was hoping for was at least

> a longer span between Austins seizures (ultimately I was hoping for

> NONE but I know better not to get my hopes up) But, I guess I did

> get my hopes up a little by hoping that the diet would show some

> results right away.

>

> Am I wrong in feeling this way? Should I not expect so much so

> quick? I have a bad outlook on things because of having my hopes

> shattered sooooooooooooooooooo many times before but I dont have a

> bad attitude about the diet because of it. I am not thinking about

> giving up at all Im going to give this a great effort but I guess I

> just needed some reassurance. His Ketones have been large ever

> since we left the hospital. We have been to the tenth of a gram on

> everything. I am very exact with it and hes doing well with eating

> the foods so I guess because we have been doing so well that I kind

> of expected better results.

>

> Well thanks for letting me vent.......This group is great for

> support and I guess I just need some reassurance right now. Thanks

> again.......Tammy (Austins Mom)

[Guest guest]

Hang in there Tammy, like you, when we started the diet with my

little Kristan, I was hoping for instant results. The diet is

helping my daughter as it has brought her seizures down from 150-200

a day to anywhere from 5-10 a day. It takes time and patience and I

now have hope that we will beat this, it's just a matter of fine

tuning.

Satnam, mom to Kristan, 14 months

Keto kid since August 2003

> Hey everyone....just writing to vent a little I guess or voice my

> concerns.

>

> We have only been on the diet for a week and a half and Im NOT

> expecting miracles here....But, Austin had his weekly seizure this

> morning....Now, I know to ALOT of you, a weekly seizure is minimal

> but its what we have to deal with and to us its too much. Now like

> I said, Im not expecting miracles but I know alot of posts that I

> have read alot of your children had instant results with at least

> reduction in seizures so I guess what I was hoping for was at least

> a longer span between Austins seizures (ultimately I was hoping for

> NONE but I know better not to get my hopes up) But, I guess I did

> get my hopes up a little by hoping that the diet would show some

> results right away.

>

> Am I wrong in feeling this way? Should I not expect so much so

> quick? I have a bad outlook on things because of having my hopes

> shattered sooooooooooooooooooo many times before but I dont have a

> bad attitude about the diet because of it. I am not thinking about

> giving up at all Im going to give this a great effort but I guess I

> just needed some reassurance. His Ketones have been large ever

> since we left the hospital. We have been to the tenth of a gram on

> everything. I am very exact with it and hes doing well with eating

> the foods so I guess because we have been doing so well that I kind

> of expected better results.

>

> Well thanks for letting me vent.......This group is great for

> support and I guess I just need some reassurance right now. Thanks

> again.......Tammy (Austins Mom)

[Guest guest]

Hang in there Tammy, like you, when we started the diet with my

little Kristan, I was hoping for instant results. The diet is

helping my daughter as it has brought her seizures down from 150-200

a day to anywhere from 5-10 a day. It takes time and patience and I

now have hope that we will beat this, it's just a matter of fine

tuning.

Satnam, mom to Kristan, 14 months

Keto kid since August 2003

> Hey everyone....just writing to vent a little I guess or voice my

> concerns.

>

> We have only been on the diet for a week and a half and Im NOT

> expecting miracles here....But, Austin had his weekly seizure this

> morning....Now, I know to ALOT of you, a weekly seizure is minimal

> but its what we have to deal with and to us its too much. Now like

> I said, Im not expecting miracles but I know alot of posts that I

> have read alot of your children had instant results with at least

> reduction in seizures so I guess what I was hoping for was at least

> a longer span between Austins seizures (ultimately I was hoping for

> NONE but I know better not to get my hopes up) But, I guess I did

> get my hopes up a little by hoping that the diet would show some

> results right away.

>

> Am I wrong in feeling this way? Should I not expect so much so

> quick? I have a bad outlook on things because of having my hopes

> shattered sooooooooooooooooooo many times before but I dont have a

> bad attitude about the diet because of it. I am not thinking about

> giving up at all Im going to give this a great effort but I guess I

> just needed some reassurance. His Ketones have been large ever

> since we left the hospital. We have been to the tenth of a gram on

> everything. I am very exact with it and hes doing well with eating

> the foods so I guess because we have been doing so well that I kind

> of expected better results.

>

> Well thanks for letting me vent.......This group is great for

> support and I guess I just need some reassurance right now. Thanks

> again.......Tammy (Austins Mom)

[Guest guest]

Tammy,

Sleep seizures on the diet are known to be one of the toughest to get rid

of. Our daughter has complex partial seizures. All awake seizures have

resolved but the sleep seizures have been the toughest. She had

tonic/clonic seizures in her sleep but not until we weaned off all

medications. We have had to keep her on a small dose of Trilelptal, giving

it to her at night only, to keep the sleep seizures in check. We have tried

weaning her off the diet resulting in her sleep seizures increasing. Right

now in her life she definitely needs the diet to keep the sleep seizures

minimal. The diet along with the small amount of trileptal, we have had

months without visible seizures. While on the diet we have discovered that

she is lactose intolerant. When we got rid of the lactose and added lactose

free yogurt the seizures significantly subsided (went from 1 every 1-3

nights to 1every 6 nights to several weeks without a seizure. So, what I am

trying to say is that it often takes time to eliminate the sleep seizures.

And, often a big plus on the diet is that it enables a child to bounce back

quicker after a seizure.

Rhonda (mom to Shan, age 9)

RE: a little disappointing

HI Rhonda........Austin has clusters of tonic/clonic seizures that only

occur during his sleep at night. He is very happy today otherwise....right

now he is jumping around behind me smiling. He just got done with " dinner "

and he's all happy lol.....thanks for your support.........Tammy

[Guest guest]

Tammy,

Sleep seizures on the diet are known to be one of the toughest to get rid

of. Our daughter has complex partial seizures. All awake seizures have

resolved but the sleep seizures have been the toughest. She had

tonic/clonic seizures in her sleep but not until we weaned off all

medications. We have had to keep her on a small dose of Trilelptal, giving

it to her at night only, to keep the sleep seizures in check. We have tried

weaning her off the diet resulting in her sleep seizures increasing. Right

now in her life she definitely needs the diet to keep the sleep seizures

minimal. The diet along with the small amount of trileptal, we have had

months without visible seizures. While on the diet we have discovered that

she is lactose intolerant. When we got rid of the lactose and added lactose

free yogurt the seizures significantly subsided (went from 1 every 1-3

nights to 1every 6 nights to several weeks without a seizure. So, what I am

trying to say is that it often takes time to eliminate the sleep seizures.

And, often a big plus on the diet is that it enables a child to bounce back

quicker after a seizure.

Rhonda (mom to Shan, age 9)

RE: a little disappointing

HI Rhonda........Austin has clusters of tonic/clonic seizures that only

occur during his sleep at night. He is very happy today otherwise....right

now he is jumping around behind me smiling. He just got done with " dinner "

and he's all happy lol.....thanks for your support.........Tammy

[Guest guest]

Tammy,

Sleep seizures on the diet are known to be one of the toughest to get rid

of. Our daughter has complex partial seizures. All awake seizures have

resolved but the sleep seizures have been the toughest. She had

tonic/clonic seizures in her sleep but not until we weaned off all

medications. We have had to keep her on a small dose of Trilelptal, giving

it to her at night only, to keep the sleep seizures in check. We have tried

weaning her off the diet resulting in her sleep seizures increasing. Right

now in her life she definitely needs the diet to keep the sleep seizures

minimal. The diet along with the small amount of trileptal, we have had

months without visible seizures. While on the diet we have discovered that

she is lactose intolerant. When we got rid of the lactose and added lactose

free yogurt the seizures significantly subsided (went from 1 every 1-3

nights to 1every 6 nights to several weeks without a seizure. So, what I am

trying to say is that it often takes time to eliminate the sleep seizures.

And, often a big plus on the diet is that it enables a child to bounce back

quicker after a seizure.

Rhonda (mom to Shan, age 9)

RE: a little disappointing

HI Rhonda........Austin has clusters of tonic/clonic seizures that only

occur during his sleep at night. He is very happy today otherwise....right

now he is jumping around behind me smiling. He just got done with " dinner "

and he's all happy lol.....thanks for your support.........Tammy

[Guest guest]

First let me say that any amount of seizures is too many

It took Mike 9 months on the diet until we saw good results and from then it has

all (mostly) been uphill, with a few snags along the way. We are now 76 days

(out of 77 had a bump in there) seizure free

Jenn

a little disappointing

We have only been on the diet for a week and a half and Im NOT

expecting miracles here....But, Austin had his weekly seizure this

morning....Now, I know to ALOT of you, a weekly seizure is minimal

but its what we have to deal with and to us its too much.

[Guest guest]

First let me say that any amount of seizures is too many

It took Mike 9 months on the diet until we saw good results and from then it has

all (mostly) been uphill, with a few snags along the way. We are now 76 days

(out of 77 had a bump in there) seizure free

Jenn

a little disappointing

We have only been on the diet for a week and a half and Im NOT

expecting miracles here....But, Austin had his weekly seizure this

morning....Now, I know to ALOT of you, a weekly seizure is minimal

but its what we have to deal with and to us its too much.

[Guest guest]

First let me say that any amount of seizures is too many

It took Mike 9 months on the diet until we saw good results and from then it has

all (mostly) been uphill, with a few snags along the way. We are now 76 days

(out of 77 had a bump in there) seizure free

Jenn

a little disappointing

We have only been on the diet for a week and a half and Im NOT

expecting miracles here....But, Austin had his weekly seizure this

morning....Now, I know to ALOT of you, a weekly seizure is minimal

but its what we have to deal with and to us its too much.

[Guest guest]

Thanks Satnam....I feel much better now getting reassurance from all of you.

Dont get me wrong, I wasnt going to give up or lose hope because he had a

seizure but I guess I was thinking in my head that maybe I did something wrong.

But, I know better now....between all of you and his dietician I have gotten

reassurance and I am much more at ease about the whole thing. Thank you very

much for your support! much appreciated....and best of luck with your little

one...........Tammy

[Guest guest]

Thanks Satnam....I feel much better now getting reassurance from all of you.

Dont get me wrong, I wasnt going to give up or lose hope because he had a

seizure but I guess I was thinking in my head that maybe I did something wrong.

But, I know better now....between all of you and his dietician I have gotten

reassurance and I am much more at ease about the whole thing. Thank you very

much for your support! much appreciated....and best of luck with your little

one...........Tammy

[Guest guest]

Thats great Jenn! I give you credit for sticking with it and not giving up. I

am definitely willing to go for the long haul to help my little man. Best of

luck to you and yours!........Tammy