Re: Help! We've lost control!

[Guest guest]

{{{{{{{{{{{{{LISA}}}}}}}}}}}}}}}}}

What med was he on? Sometimes they take a while to " clear " the system, no

matter what the docs sometimes say. Acidity can be a problem for some kids,

not for others, I will let the " experts " talk about that.

Any other problems? Ketone fluctuation? Change in anything other than

" brightness " ? (which is a clue)

Higher PH (which usually goes with higher ketones for my boy) makes him very

irritable.........

Are you charting? Can you go back through your days and see where he was

best, moodwise, and pick up any clues?

Hang in there, you are doing OK, I know the SZ. return is horrible. It

feels just awful. But we can try a number of things. Love, Deb

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0. I

> don't know what the PH level is supposed to tell us,

> and our dietician says " don't worry about it " . I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the " honeymoon effect " with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

>

> __________________________________________________

>

[Guest guest]

Hi

What ratio and calories is Ben on. You may need to fine tune these.What is Ben's

age,

weight? Often as you drop meds things need to be finetuned as the meds interfere

with

metabolism- as meds are dropped metabolism changes. There are many things you

can do but

you must go slowly so as not to upset the balance. Usually lo ph ( acidity)

indicates

ratio is too hi but post the numbers above and the experts will advise. Don't

dispair-

the honey moon is not necessarily over.

Faye.

lisa neumann wrote:

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0. I

> don't know what the PH level is supposed to tell us,

> and our dietician says " don't worry about it " . I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the " honeymoon effect " with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

>

> __________________________________________________

>

[Guest guest]

Dear ,

We are in the same boat as you. My daughter started the diet in April, and we immediately had 21 days seizure free. I started weaning meds, she got sick and gradually the seizures returned full force ( myoclonics 50+ daily). Our dietition is having us "restart" the diet at home. So last night began a 24 hr. fast, which will be followed by three 1/3 strength eggnog meals, three 2/3 strength eggnog meals, and then full meals. With the restart they have reduced 's calories by 100 cal. per day so that she will lose weight (3 pounds). The dietition says that weight is critical in fine-tuning. The child needs to be between 25 and 50% of ideal body weight for the diet to be most effective.

Also with the restart I am eliminating foods (including shampoos and soaps) that have aspartame and msg derivitives. I recently read the book by Dr. Blaylock that Barb on this list recommended. I was amazed to find that so many of the keto friendly foods that I was giving my daughter daily had those additives. I have even found a cream at a whole foods store that doesn't have the preservative Carrageenan. Here is a website that lists hidden sources of MSG: http://www.holisticmed.com/msg/msg-sources-txt.

Perhaps a restart and/or eliminating some foods will help?

Sandy, 's mom

Help! We've lost control!

Hi everyone,I have been gone for a while. Our son Ben started the diet on 4/1 of this year and startedoff with a bang. he had 17 seizure free days in a rowright off the bat and we thought this was the miraclewe had been searching for. Then he began having asiezure every 10-12 days, which was still good forhim. during this whole time we have been lowering hismedication very slowly. then the sieuzres went toevery week. and these past two weeks they are everyday. Pre diet he was having one every 5-7 days butwas on 600mg medication. Now he is on 100mgmedication and having one every day. His lastdecrease was a month ago. to make matters worse, he seems to be very slowedthese past 3 weeks. cognitiviely i would swear he wason a ton of drugs because he is having trouble withspeaking and is in a fog. i thought the diet wassupposed to make them brighter? At the beginning ofthe diet (during our seizure-free days) he was verybright. Now we are going down hill, fast. He is alsovery irritable. Does PH have anything to do withthis? Ben's PH level on the stick is always 5.0. Idon't know what the PH level is supposed to tell us,and our dietician says "don't worry about it". I amcompletely frustrated with our dietician. when Iasked her to fine tune the diet she said there wasn'tmuch she could do. she thought that maybe Ben justexperienced the "honeymoon effect" with the diet andthat it just may not work for him. But we had 17seizure free days! That is amazing for him and I'mnot ready to give up yet. what do you all think? I need some help desperately. ben has done everything by the book with t he diet andnever complains about it and has never even tried tocheat. We owe him our best thinking, but I just amnot getting anything from our doctor or dietician. Thanks for hanging in there with my long post.__________________________________________________

[Guest guest]

,

I agree with Sandy on the weight issue...... our dietician says this, too. They get the best control when kids are around the 25th percentile for weight. I also don't believe in that "honeymoon" theory..... I think if you had control right away, that is simply a good indication that the diet holds promise for Ben. I would think that it's more a matter of fine-tuning and adjusting the diet to the changes ..... like Faye said, they often need a lower ratio when meds are eliminated. Hang on, dear....... post his ratio, weight, etc... and see what the real experts think I'm just guessing but I'd bet he's too ketotic..... hence the lack of energy and "spark". Your dietician sounds like a real winner, and not very motivated to help your son.

Patti, mom to Katera

Help! We've lost control!

Hi everyone,I have been gone for a while. Our son Ben started the diet on 4/1 of this year and startedoff with a bang. he had 17 seizure free days in a rowright off the bat and we thought this was the miraclewe had been searching for. Then he began having asiezure every 10-12 days, which was still good forhim. during this whole time we have been lowering hismedication very slowly. then the sieuzres went toevery week. and these past two weeks they are everyday. Pre diet he was having one every 5-7 days butwas on 600mg medication. Now he is on 100mgmedication and having one every day. His lastdecrease was a month ago. to make matters worse, he seems to be very slowedthese past 3 weeks. cognitiviely i would swear he wason a ton of drugs because he is having trouble withspeaking and is in a fog. i thought the diet wassupposed to make them brighter? At the beginning ofthe diet (during our seizure-free days) he was verybright. Now we are going down hill, fast. He is alsovery irritable. Does PH have anything to do withthis? Ben's PH level on the stick is always 5.0. Idon't know what the PH level is supposed to tell us,and our dietician says "don't worry about it". I amcompletely frustrated with our dietician. when Iasked her to fine tune the diet she said there wasn'tmuch she could do. she thought that maybe Ben justexperienced the "honeymoon effect" with the diet andthat it just may not work for him. But we had 17seizure free days! That is amazing for him and I'mnot ready to give up yet. what do you all think? I need some help desperately. ben has done everything by the book with t he diet andnever complains about it and has never even tried tocheat. We owe him our best thinking, but I just amnot getting anything from our doctor or dietician. Thanks for hanging in there with my long post.

[Guest guest]

Post his stats, height, weight, calories, ratio, amount of protien per day and

maybe

someone will notice something. 5 on the stix is a little low, did you notice in

the

beginning when you had good control what his ph was?

michelle, jessica's mom

lisa neumann wrote:

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0. I

> don't know what the PH level is supposed to tell us,

> and our dietician says " don't worry about it " . I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the " honeymoon effect " with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

>

> __________________________________________________

>

[Guest guest]

lisa, I am a lifer mom that has been away from this list for some time. My son has been on the diet for 4 1/2 years. The ph of 5 is dangerously low. Do you have a glucometer to check his blood sugar? This would be a good idea. You dietitian, to put it mildly sounds inexperienced and not extremely knowledgeable. My guess would be with Patti, in that your son is too ketotic and most likely hypoglycemic. Try giving him OJ, 10 cc at a time, every 30 minutes and see what happens to his lethargy. If his blood sugar is below 50, he could be in danger. I am not trying to scare you. My son has only ever been able to tolerate a ratio of 2.7:1. Being too ketotic or hypoglycemic can cause seizures. It is finding that even balance. Ben may just be a child that will need to use both meds and the diet. I wish you luck. Stay strong and you will know what is best. Lori Help! We've lost control! Hi everyone,I have been gone for a while. Our son Ben started the diet on 4/1 of this year and startedoff with a bang. he had 17 seizure free days in a rowright off the bat and we thought this was the miraclewe had been searching for. Then he began having asiezure every 10-12 days, which was still good forhim. during this whole time we have been lowering hismedication very slowly. then the sieuzres went toevery week. and these past two weeks they are everyday. Pre diet he was having one every 5-7 days butwas on 600mg medication. Now he is on 100mgmedication and having one every day. His lastdecrease was a month ago. to make matters worse, he seems to be very slowedthese past 3 weeks. cognitiviely i would swear he wason a ton of drugs because he is having trouble withspeaking and is in a fog. i thought the diet wassupposed to make them brighter? At the beginning ofthe diet (during our seizure-free days) he was verybright. Now we are going down hill, fast. He is alsovery irritable. Does PH have anything to do withthis? Ben's PH level on the stick is always 5.0. Idon't know what the PH level is supposed to tell us,and our dietician says "don't worry about it". I amcompletely frustrated with our dietician. when Iasked her to fine tune the diet she said there wasn'tmuch she could do. she thought that maybe Ben justexperienced the "honeymoon effect" with the diet andthat it just may not work for him. But we had 17seizure free days! That is amazing for him and I'mnot ready to give up yet. what do you all think? I need some help desperately. ben has done everything by the book with t he diet andnever complains about it and has never even tried tocheat. We owe him our best thinking, but I just amnot getting anything from our doctor or dietician. Thanks for hanging in there with my long post. "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]

Just my initial thoughts....if he did so well w/ meds and the diet....try

putting the med back. If he's acting in a fog....he could be having

subclinical seizures....maybe he needs the med. Not all kids on the diet

can become med free...though it is a goal for many. Getting rid of the

seizures is goal #1, then the meds if possible.

Also....ph of 5 is acidic....what's the ratio? You can also give him

something to combat acidosis.....Jake takes Polycitra, a system

alkalyzer....because he used to be so acidic too....

Barb Swoyer, Jake's mom

Help! We've lost control!

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0. I

> don't know what the PH level is supposed to tell us,

> and our dietician says " don't worry about it " . I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the " honeymoon effect " with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

>

> __________________________________________________

>

[Guest guest]

Just my initial thoughts....if he did so well w/ meds and the diet....try

putting the med back. If he's acting in a fog....he could be having

subclinical seizures....maybe he needs the med. Not all kids on the diet

can become med free...though it is a goal for many. Getting rid of the

seizures is goal #1, then the meds if possible.

Also....ph of 5 is acidic....what's the ratio? You can also give him

something to combat acidosis.....Jake takes Polycitra, a system

alkalyzer....because he used to be so acidic too....

Barb Swoyer, Jake's mom

Help! We've lost control!

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0. I

> don't know what the PH level is supposed to tell us,

> and our dietician says " don't worry about it " . I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the " honeymoon effect " with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

>

> __________________________________________________

>

[Guest guest]

Just my initial thoughts....if he did so well w/ meds and the diet....try

putting the med back. If he's acting in a fog....he could be having

subclinical seizures....maybe he needs the med. Not all kids on the diet

can become med free...though it is a goal for many. Getting rid of the

seizures is goal #1, then the meds if possible.

Also....ph of 5 is acidic....what's the ratio? You can also give him

something to combat acidosis.....Jake takes Polycitra, a system

alkalyzer....because he used to be so acidic too....

Barb Swoyer, Jake's mom

Help! We've lost control!

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0. I

> don't know what the PH level is supposed to tell us,

> and our dietician says " don't worry about it " . I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the " honeymoon effect " with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

>

> __________________________________________________

>

[Guest guest]

As some others have already said, I would think that you may need to fine

tune the diet for Ben. What are Bens ketones like and are they higher than

before the drugs we weaned? With Hannah we found that she was lethargic,

felt unwell,and had red cheeks and chin when she has high ketones. Hannah's

urine pH doesn't seem to change much from about 5 or 6 (this is just acidic,

and for Hannah is normal). Since we have totally weaned lamictal we have

dropped the ratio twice, from 4:1 to 3.5:1 and then yesterday to 3:1. As the

drugs are eliminated from the body, including those which have been stored

away in fat, the metabolism changes and dropping the ratio often helps. The

first ratio change corrected the problem and we are still waiting to see the

effects of the change we made yesterday.

I'm reiterating what others have said because, for me, I have greater

confidence to try things which have been verified by others, the more the

better. I hope with a few small changes we can help you to make improvements

for Ben.

cheers

(Hannah's mum, Australia)

Help! We've lost control!

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0. I

> don't know what the PH level is supposed to tell us,

> and our dietician says " don't worry about it " . I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the " honeymoon effect " with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

>

> __________________________________________________

>

[Guest guest]

As some others have already said, I would think that you may need to fine

tune the diet for Ben. What are Bens ketones like and are they higher than

before the drugs we weaned? With Hannah we found that she was lethargic,

felt unwell,and had red cheeks and chin when she has high ketones. Hannah's

urine pH doesn't seem to change much from about 5 or 6 (this is just acidic,

and for Hannah is normal). Since we have totally weaned lamictal we have

dropped the ratio twice, from 4:1 to 3.5:1 and then yesterday to 3:1. As the

drugs are eliminated from the body, including those which have been stored

away in fat, the metabolism changes and dropping the ratio often helps. The

first ratio change corrected the problem and we are still waiting to see the

effects of the change we made yesterday.

I'm reiterating what others have said because, for me, I have greater

confidence to try things which have been verified by others, the more the

better. I hope with a few small changes we can help you to make improvements

for Ben.

cheers

(Hannah's mum, Australia)

Help! We've lost control!

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0. I

> don't know what the PH level is supposed to tell us,

> and our dietician says " don't worry about it " . I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the " honeymoon effect " with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

>

> __________________________________________________

>

[Guest guest]

As some others have already said, I would think that you may need to fine

tune the diet for Ben. What are Bens ketones like and are they higher than

before the drugs we weaned? With Hannah we found that she was lethargic,

felt unwell,and had red cheeks and chin when she has high ketones. Hannah's

urine pH doesn't seem to change much from about 5 or 6 (this is just acidic,

and for Hannah is normal). Since we have totally weaned lamictal we have

dropped the ratio twice, from 4:1 to 3.5:1 and then yesterday to 3:1. As the

drugs are eliminated from the body, including those which have been stored

away in fat, the metabolism changes and dropping the ratio often helps. The

first ratio change corrected the problem and we are still waiting to see the

effects of the change we made yesterday.

I'm reiterating what others have said because, for me, I have greater

confidence to try things which have been verified by others, the more the

better. I hope with a few small changes we can help you to make improvements

for Ben.

cheers

(Hannah's mum, Australia)

Help! We've lost control!

> Hi everyone,

> I have been gone for a while. Our son

> Ben started the diet on 4/1 of this year and started

> off with a bang. he had 17 seizure free days in a row

> right off the bat and we thought this was the miracle

> we had been searching for. Then he began having a

> siezure every 10-12 days, which was still good for

> him. during this whole time we have been lowering his

> medication very slowly. then the sieuzres went to

> every week. and these past two weeks they are every

> day. Pre diet he was having one every 5-7 days but

> was on 600mg medication. Now he is on 100mg

> medication and having one every day. His last

> decrease was a month ago.

> to make matters worse, he seems to be very slowed

> these past 3 weeks. cognitiviely i would swear he was

> on a ton of drugs because he is having trouble with

> speaking and is in a fog. i thought the diet was

> supposed to make them brighter? At the beginning of

> the diet (during our seizure-free days) he was very

> bright. Now we are going down hill, fast. He is also

> very irritable. Does PH have anything to do with

> this? Ben's PH level on the stick is always 5.0. I

> don't know what the PH level is supposed to tell us,

> and our dietician says " don't worry about it " . I am

> completely frustrated with our dietician. when I

> asked her to fine tune the diet she said there wasn't

> much she could do. she thought that maybe Ben just

> experienced the " honeymoon effect " with the diet and

> that it just may not work for him. But we had 17

> seizure free days! That is amazing for him and I'm

> not ready to give up yet.

> what do you all think? I need some help desperately.

> ben has done everything by the book with t he diet and

> never complains about it and has never even tried to

> cheat. We owe him our best thinking, but I just am

> not getting anything from our doctor or dietician.

> Thanks for hanging in there with my long post.

>

>

> __________________________________________________

>

[Guest guest]

Perhaps a restart and/or eliminating some foods will help?

that would be great!

Elaine

[Guest guest]

Dear :

I have not seen many people comment on the PH being 5-but can't

handle 5-he is fine at 6 but when it dips a little he is acidic. I use Club

Soda in his Keto Koolaid-about 15 to 20 mls to the 6 cup container and it

seems to keep him at 6-when I forget to add it back to 5 and grouchy and

crying and red ears etc. I think it is worth a try. I found while weaning

Depakote we developed this thing called ketone bounce and along with it

acquired the acidity.

Good Luck and I am sure with all of the wonderful advice from these experts

you will get back on track.

Although.............during a drug wean being back on track can be difficult

at times.

I am sending you strength and prayers

Hugs

Diane

Re: Help! We've lost control!

> Hi

> What ratio and calories is Ben on. You may need to fine tune these.What is

Ben's age,

> weight? Often as you drop meds things need to be finetuned as the meds

interfere with

> metabolism- as meds are dropped metabolism changes. There are many things

you can do but

> you must go slowly so as not to upset the balance. Usually lo ph

acidity) indicates

> ratio is too hi but post the numbers above and the experts will advise.

Don't dispair-

> the honey moon is not necessarily over.

> Faye.

>

> lisa neumann wrote:

>

> > Hi everyone,

> > I have been gone for a while. Our son

> > Ben started the diet on 4/1 of this year and started

> > off with a bang. he had 17 seizure free days in a row

> > right off the bat and we thought this was the miracle

> > we had been searching for. Then he began having a

> > siezure every 10-12 days, which was still good for

> > him. during this whole time we have been lowering his

> > medication very slowly. then the sieuzres went to

> > every week. and these past two weeks they are every

> > day. Pre diet he was having one every 5-7 days but

> > was on 600mg medication. Now he is on 100mg

> > medication and having one every day. His last

> > decrease was a month ago.

> > to make matters worse, he seems to be very slowed

> > these past 3 weeks. cognitiviely i would swear he was

> > on a ton of drugs because he is having trouble with

> > speaking and is in a fog. i thought the diet was

> > supposed to make them brighter? At the beginning of

> > the diet (during our seizure-free days) he was very

> > bright. Now we are going down hill, fast. He is also

> > very irritable. Does PH have anything to do with

> > this? Ben's PH level on the stick is always 5.0. I

> > don't know what the PH level is supposed to tell us,

> > and our dietician says " don't worry about it " . I am

> > completely frustrated with our dietician. when I

> > asked her to fine tune the diet she said there wasn't

> > much she could do. she thought that maybe Ben just

> > experienced the " honeymoon effect " with the diet and

> > that it just may not work for him. But we had 17

> > seizure free days! That is amazing for him and I'm

> > not ready to give up yet.

> > what do you all think? I need some help desperately.

> > ben has done everything by the book with t he diet and

> > never complains about it and has never even tried to

> > cheat. We owe him our best thinking, but I just am

> > not getting anything from our doctor or dietician.

> > Thanks for hanging in there with my long post.

> >

> >

> > __________________________________________________

> >

[Guest guest]

Dear :

I have not seen many people comment on the PH being 5-but can't

handle 5-he is fine at 6 but when it dips a little he is acidic. I use Club

Soda in his Keto Koolaid-about 15 to 20 mls to the 6 cup container and it

seems to keep him at 6-when I forget to add it back to 5 and grouchy and

crying and red ears etc. I think it is worth a try. I found while weaning

Depakote we developed this thing called ketone bounce and along with it

acquired the acidity.

Good Luck and I am sure with all of the wonderful advice from these experts

you will get back on track.

Although.............during a drug wean being back on track can be difficult

at times.

I am sending you strength and prayers

Hugs

Diane

Re: Help! We've lost control!

> Hi

> What ratio and calories is Ben on. You may need to fine tune these.What is

Ben's age,

> weight? Often as you drop meds things need to be finetuned as the meds

interfere with

> metabolism- as meds are dropped metabolism changes. There are many things

you can do but

> you must go slowly so as not to upset the balance. Usually lo ph

acidity) indicates

> ratio is too hi but post the numbers above and the experts will advise.

Don't dispair-

> the honey moon is not necessarily over.

> Faye.

>

> lisa neumann wrote:

>

> > Hi everyone,

> > I have been gone for a while. Our son

> > Ben started the diet on 4/1 of this year and started

> > off with a bang. he had 17 seizure free days in a row

> > right off the bat and we thought this was the miracle

> > we had been searching for. Then he began having a

> > siezure every 10-12 days, which was still good for

> > him. during this whole time we have been lowering his

> > medication very slowly. then the sieuzres went to

> > every week. and these past two weeks they are every

> > day. Pre diet he was having one every 5-7 days but

> > was on 600mg medication. Now he is on 100mg

> > medication and having one every day. His last

> > decrease was a month ago.

> > to make matters worse, he seems to be very slowed

> > these past 3 weeks. cognitiviely i would swear he was

> > on a ton of drugs because he is having trouble with

> > speaking and is in a fog. i thought the diet was

> > supposed to make them brighter? At the beginning of

> > the diet (during our seizure-free days) he was very

> > bright. Now we are going down hill, fast. He is also

> > very irritable. Does PH have anything to do with

> > this? Ben's PH level on the stick is always 5.0. I

> > don't know what the PH level is supposed to tell us,

> > and our dietician says " don't worry about it " . I am

> > completely frustrated with our dietician. when I

> > asked her to fine tune the diet she said there wasn't

> > much she could do. she thought that maybe Ben just

> > experienced the " honeymoon effect " with the diet and

> > that it just may not work for him. But we had 17

> > seizure free days! That is amazing for him and I'm

> > not ready to give up yet.

> > what do you all think? I need some help desperately.

> > ben has done everything by the book with t he diet and

> > never complains about it and has never even tried to

> > cheat. We owe him our best thinking, but I just am

> > not getting anything from our doctor or dietician.

> > Thanks for hanging in there with my long post.

> >

> >

> > __________________________________________________

> >

[Guest guest]

Dear :

I have not seen many people comment on the PH being 5-but can't

handle 5-he is fine at 6 but when it dips a little he is acidic. I use Club

Soda in his Keto Koolaid-about 15 to 20 mls to the 6 cup container and it

seems to keep him at 6-when I forget to add it back to 5 and grouchy and

crying and red ears etc. I think it is worth a try. I found while weaning

Depakote we developed this thing called ketone bounce and along with it

acquired the acidity.

Good Luck and I am sure with all of the wonderful advice from these experts

you will get back on track.

Although.............during a drug wean being back on track can be difficult

at times.

I am sending you strength and prayers

Hugs

Diane

Re: Help! We've lost control!

> Hi

> What ratio and calories is Ben on. You may need to fine tune these.What is

Ben's age,

> weight? Often as you drop meds things need to be finetuned as the meds

interfere with

> metabolism- as meds are dropped metabolism changes. There are many things

you can do but

> you must go slowly so as not to upset the balance. Usually lo ph

acidity) indicates

> ratio is too hi but post the numbers above and the experts will advise.

Don't dispair-

> the honey moon is not necessarily over.

> Faye.

>

> lisa neumann wrote:

>

> > Hi everyone,

> > I have been gone for a while. Our son

> > Ben started the diet on 4/1 of this year and started

> > off with a bang. he had 17 seizure free days in a row

> > right off the bat and we thought this was the miracle

> > we had been searching for. Then he began having a

> > siezure every 10-12 days, which was still good for

> > him. during this whole time we have been lowering his

> > medication very slowly. then the sieuzres went to

> > every week. and these past two weeks they are every

> > day. Pre diet he was having one every 5-7 days but

> > was on 600mg medication. Now he is on 100mg

> > medication and having one every day. His last

> > decrease was a month ago.

> > to make matters worse, he seems to be very slowed

> > these past 3 weeks. cognitiviely i would swear he was

> > on a ton of drugs because he is having trouble with

> > speaking and is in a fog. i thought the diet was

> > supposed to make them brighter? At the beginning of

> > the diet (during our seizure-free days) he was very

> > bright. Now we are going down hill, fast. He is also

> > very irritable. Does PH have anything to do with

> > this? Ben's PH level on the stick is always 5.0. I

> > don't know what the PH level is supposed to tell us,

> > and our dietician says " don't worry about it " . I am

> > completely frustrated with our dietician. when I

> > asked her to fine tune the diet she said there wasn't

> > much she could do. she thought that maybe Ben just

> > experienced the " honeymoon effect " with the diet and

> > that it just may not work for him. But we had 17

> > seizure free days! That is amazing for him and I'm

> > not ready to give up yet.

> > what do you all think? I need some help desperately.

> > ben has done everything by the book with t he diet and

> > never complains about it and has never even tried to

> > cheat. We owe him our best thinking, but I just am

> > not getting anything from our doctor or dietician.

> > Thanks for hanging in there with my long post.

> >

> >

> > __________________________________________________

> >

[Guest guest]

Faye,

In answer to your inquiry about Ben, he is 5 1/2 years

old, weighs 53 pounds (down from 57 when starting the

diet),. he is on the 4:1 ratio and gets 1330 calories

per day in three meals. We had tried a snack for a

while but lost control and so we took it out. He does

not eat any " free' foods, sticks only to 6 menus and

NEVER cheats. Nothing new in the diet, or on the

labels, no change in sleeping patterns and he is not

ill. I am at my wits end in trying to figure out the

reason that things could have started out so good and

are now the pits. Any help would be wonderful.

Thanks,

__________________________________________________

[Guest guest]

Hi Sandy,

thanks for your reply regarding our loss of control

with Ben. I have a question for you about why you are

restarting. what is the benefit of doing that? I ask

because Ben's ketones are always 160+ and he never has

a problem maintaining high levels of ketosis. Would

restarting still be an option for us?

Thanks, lisa

__________________________________________________

[Guest guest]

Hi

I'm playing a bit with Ben's numbers. You seem to have the right calories based

on Ben's

ideal weight but often dietitians break down the amount of protein/carb also

based on

ideal weight - instead of actual weight.This can cause a protein deficiency and

then

kids become very lethargic and weak- the fog sets in as I say. What is Ben's

breakdown/meal of fat, protein and carb? When Mike started the diet his protein

was far

too low. While he seemed ok at first after about three months he became so weak

that he

had to be pushed everywhere in a stroller- 5 years old- and he couldn't think

clearly.

One week after a major protien adjustment he was running everywhere. Little

changes in

numders can do alot. Get me the numbers and I will compare them to what I

calculate.

Sounds to me like he needs more protein.

faye

lisa neumann wrote:

> Faye,

> In answer to your inquiry about Ben, he is 5 1/2 years

> old, weighs 53 pounds (down from 57 when starting the

> diet),. he is on the 4:1 ratio and gets 1330 calories

> per day in three meals. We had tried a snack for a

> while but lost control and so we took it out. He does

> not eat any " free' foods, sticks only to 6 menus and

> NEVER cheats. Nothing new in the diet, or on the

> labels, no change in sleeping patterns and he is not

> ill. I am at my wits end in trying to figure out the

> reason that things could have started out so good and

> are now the pits. Any help would be wonderful.

> Thanks,

>

> __________________________________________________

>

[Guest guest]

,

I will let Faye and the others give you some specific suggestions but I would say the culprit may be that high ratio. Especially if he is always 160+ in ketones. It sounds like he is just toooooo ketotic and might benefit from lowering the ratio. 4:1 is pretty steep. We started the diet on 3.5:1 because our keto clinic has found that most kids don't need 4:1...... but we've had to lower Katera's..... now down to 2.75:1 (because of irritability...just feeling lousy.... from being too ketotic) and she still runs between 80 and 160 ALL the time. Every kid is different but I think that might be worth a try. Maybe just down to 3.8:1 and see what difference this makes for him. Some kids seize more when too ketotic.

Patti

Re: Help! We've lost control!

Faye,In answer to your inquiry about Ben, he is 5 1/2 yearsold, weighs 53 pounds (down from 57 when starting thediet),. he is on the 4:1 ratio and gets 1330 caloriesper day in three meals. We had tried a snack for awhile but lost control and so we took it out. He doesnot eat any "free' foods, sticks only to 6 menus andNEVER cheats. Nothing new in the diet, or on thelabels, no change in sleeping patterns and he is notill. I am at my wits end in trying to figure out thereason that things could have started out so good andare now the pits. Any help would be wonderful.Thanks, __________________________________________________

[Guest guest]

:

Some people on this list say you may not go seizure free until you've

completely weaned the meds. This is what I'm hoping is also true for us.

We have been on the diet for 6 months now. We were seizure free (just like

you), then we started weaning and still did OK. Then allergy season hit and

seizures hit with a vengeance and, although we are having fewer seizures

than during his peak allergy season, we have not been seizure free for more

than 2 months now. We are trying to get him off his meds to see if we can

then fine tune the diet enough to get control back. He's getting really

impatient with the whole process and wants to come off the diet and go back

on meds. My son is 11 and has a real mind of his own, although he has not

cheated at all. I'm reading with interest all responses to your questions,

since they could also apply to us. I'm sorry I can't give you more positive

information than this, but know that I'm thinking of you and that you are

not alone.

>

>Date: Fri, 6 Jul 2001 07:34:13 -0700 (PDT)

>

>Faye,

>In answer to your inquiry about Ben, he is 5 1/2 years

>old, weighs 53 pounds (down from 57 when starting the

>diet),. he is on the 4:1 ratio and gets 1330 calories

>per day in three meals. We had tried a snack for a

>while but lost control and so we took it out. He does

>not eat any " free' foods, sticks only to 6 menus and

>NEVER cheats. Nothing new in the diet, or on the

>labels, no change in sleeping patterns and he is not

>ill. I am at my wits end in trying to figure out the

>reason that things could have started out so good and

>are now the pits. Any help would be wonderful.

>Thanks,

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

has never not been at a 5. . .and she's back to being very "naughty" and irritable again. Is club soda just a quick fix? I've been wanting to lower her ratio for a long time, but since we've lost control again (after the last of the Lamictal 2 weeks ago), I'm hesitant. . .almost fearing I might have to go up. Are club soda and decreased ratio the only things to do for acidity?--D

***

I have not seen many people comment on the PH being 5-but can'thandle 5-he is fine at 6 but when it dips a little he is acidic. I use ClubSoda in his Keto Koolaid-about 15 to 20 mls to the 6 cup container and itseems to keep him at 6-when I forget to add it back to 5 and grouchy andcrying and red ears etc.

[Guest guest]

lisa neumann wrote:

> Faye,

> In answer to your inquiry about Ben, he is 5 1/2 years

> old, weighs 53 pounds (down from 57 when starting the

> diet),. he is on the 4:1 ratio and gets 1330 calories

> per day in three meals.

Just reading mail haphazardly here, but thought I would jump in

Weight sounds kind of high for five and a half year old, not for a typical kid

(my

non-keto kid is 5 and only weighs a few pounds less) but for a ketokid - Jess is

8 and

only weighs about 50 pounds or just under. How tall is he?? Kids to better on

the diet

being on the underweight side. Where does he sit on the growth chart. And how

much

protien per day?

, 's mom

> We had tried a snack for a

> while but lost control and so we took it out. He does

> not eat any " free' foods, sticks only to 6 menus and

> NEVER cheats. Nothing new in the diet, or on the

> labels, no change in sleeping patterns and he is not

> ill. I am at my wits end in trying to figure out the

> reason that things could have started out so good and

> are now the pits. Any help would be wonderful.

> Thanks,

>

> __________________________________________________

>

[Guest guest]

,

The nurse at Hopkins told me that there are other benefits to fasting, besides increasing ketones. However, she said they don't exactly know what those benefits are. But for kids who initially responded very well, she said a restart will often help. And it cleanses the body and uses any glucose stores that may be there.

I guess if the mechanisms of the diet were better understood we would get a clearer answer.

Sandy

Re: Help! We've lost control!

Hi Sandy,thanks for your reply regarding our loss of controlwith Ben. I have a question for you about why you arerestarting. what is the benefit of doing that? I askbecause Ben's ketones are always 160+ and he never hasa problem maintaining high levels of ketosis. Wouldrestarting still be an option for us?Thanks, lisa__________________________________________________

[Guest guest]

DeEtte, another quick fix I've used is cordial (normal dilution) or orange juice. I've used both, only 10 ml, and had a good result inside half an hour.

(Hannah's mum, Australia)

RE: Help! We've lost control!

has never not been at a 5. . .and she's back to being very "naughty" and irritable again. Is club soda just a quick fix? I've been wanting to lower her ratio for a long time, but since we've lost control again (after the last of the Lamictal 2 weeks ago), I'm hesitant. . .almost fearing I might have to go up. Are club soda and decreased ratio the only things to do for acidity?--D

***

I have not seen many people comment on the PH being 5-but can'thandle 5-he is fine at 6 but when it dips a little he is acidic. I use ClubSoda in his Keto Koolaid-about 15 to 20 mls to the 6 cup container and itseems to keep him at 6-when I forget to add it back to 5 and grouchy andcrying and red ears etc. "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