Re: cloudy days again. . .

[Guest guest]

Oh DeEtte- I am so sorry!!! I do not have any great ideas but i was thinking as I read your post that possibly with the digestive enzymes, her body is digesting the fat in a more efficient manner and that maybe a decrease in ratio might help. Just an idea- but mostly wanted you to know that you and are in my thoughts and prayers. I pray you find the answer to this and that seizure free days and nights return.

[Guest guest]

Dear DeEtte:

From one mushy brain to another...When started the digestive ensymes he too did fine, but I slowly noticed that he was becoming more acidic-probablly from digesting his food better and it became necessary to lower his ratio.

It is just an idea-have you been testing her PH?

Hugs & Hopes for Sweet Dreams for you Both

Diane

cloudy days again. . .

Well, it seems I have to write every 4-6 weeks with anew desparate cry. My brain is mush, so I need somethoughts from the "experts."'s on a 3.6 ratio. She was doing VERY well afterintroducing digestive enzymes -- 13 seizure free days.That all went out the window. . . possibly due to arecurrance of the danged virus that started all this,seasonal allergies, both or none. She's begun hernightly seizure routine again. Before she would haveone between 4 and 6 a.m. Wasn't a huge deal and she'dgo back to sleep. Now it's 2-3 a night and last nightI lost count. . . probably a dozen. She's also brokenthrough with a few daytime seizures again. She hasn'tslept in weeks -- and neither have I.Her ketones have always been lighter in the morning. Before this, she'd be light in the morning andmoderate in the evening. This morning she wasmoderate (40-80 -- higher than usual) and when Ichecked at noon she was 160+. . . about 15 minuteslater, she had another seizure. Now, I'm not surewhich is better for her -- trace, small, moderate orheavy ketones.Truthfully, I've never really thought that the seizurecontrol she's had on the diet has been due to ketosis-- I feel it's more due to a controlled diet and moreeven blood sugars -- except at night.I really have no idea what to do. I'm almost thinkingof bagging the diet -- to do what, I don't know. Myhusband thinks that's crazy because she's so muchbetter than she ever was on meds. That's very truefrom a behavioral and developmental and learningstandpoint -- but the seizures are now worse. That'snot his perception, but that's because he's asleepwhile all this is going on. I'm wondering what I should do about ketones. Myfirst thought this morning was to raise the ratio --but again, her ketones were darker than usual -- sothat doesn't seem right.Perhaps the digestive enzymes are making her moresensitive to things? These were suggested by our DANdoc and I really felt good about them -- still do, ata gut level. Perhaps it's something that we need toride out.Does anyone have any idea about how to keep ketonesconsistent at night? My other query is whetherthere's anything that can be done -- naturally or. . .with medication (which would break my heart) to helpher system calm down at night. Does anyone do AEDsonly at night? I'm grasping at straws again. I imagine this tooshall pass and we'll see a good seizure-free streakagain. . .but the bottom line is that the diet isn'tworking and I'm just not sure what to do at thispoint.Appreciate any thoughts.--D=====DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ"I know God would never give me more than I can handle. . .I just wish he didn't trust me so much." -- Mother Theresa__________________________________________________

[Guest guest]

I was thinking the exact same thing...... seems more likely that the enzymes are doing their job and she is utilizing her fats much more efficiently. Katera didn't have breakthroughs when I started enzymes but she HAS gotten terribly ketotic and needed a lower ratio...... and it is true that some of the kids seize more when too ketotic. Definitely DON'T increase the ratio!! Just my gut here....

Patti, mom to Katera who just passed her one year anniv. on the diet (10/10).

Re: cloudy days again. . .

Oh DeEtte- I am so sorry!!! I do not have any great ideas but i was thinking as I read your post that possibly with the digestive enzymes, her body is digesting the fat in a more efficient manner and that maybe a decrease in ratio might help. Just an idea- but mostly wanted you to know that you and are in my thoughts and prayers. I pray you find the answer to this and that seizure free days and nights return. "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]

Okay, gang. . .well that makes three of you voting for

too acidic. That's a huge possibility. I used to

have the multi-stix that Nan gave me and every time I

measured, she was a " 5 " -- as acidic as the stick

measured. I'm out of the multi-stix and Walgreen

doesn't have them -- but I'm positive that it would be

the same (or more so, but not even be able to show

that acidic). I wonder if our pool pH sticks would

work -- :-). Hmmm. . . I had thought of the enzymes

making the diet work " better " -- but hadn't thought of

the acidity issue. Let me ponder the ratio drop --

I'd love it because she's still on such a high ratio,

with so little " real food " -- just nervous. . . it's

weird how logic (and the medical professionals) always

says to raise or do more.

Thanks for your thoughts. . .man would I love some sleep!--D

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. " -- Mother Theresa

__________________________________________________

[Guest guest]

DeEtte:

Your not going to believe this-BUT your pool PH sticks do work. thought it was cool that the pool had sticks like he had and he has tried them and I was shocked at their accuracy. Give it a try.

Hang in there-You are such a great Mom!!

Hugs

Diane

Re: cloudy days again. . .

Okay, gang. . .well that makes three of you voting fortoo acidic. That's a huge possibility. I used tohave the multi-stix that Nan gave me and every time Imeasured, she was a "5" -- as acidic as the stickmeasured. I'm out of the multi-stix and Walgreendoesn't have them -- but I'm positive that it would bethe same (or more so, but not even be able to showthat acidic). I wonder if our pool pH sticks wouldwork -- :-). Hmmm. . . I had thought of the enzymesmaking the diet work "better" -- but hadn't thought ofthe acidity issue. Let me ponder the ratio drop --I'd love it because she's still on such a high ratio,with so little "real food" -- just nervous. . . it'sweird how logic (and the medical professionals) alwayssays to raise or do more. Thanks for your thoughts. . .man would I love some sleep!--D=====DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ"I know God would never give me more than I can handle. . .I just wish he didn't trust me so much." -- Mother Theresa__________________________________________________

[Guest guest]

Hi DeEtte

You are exactly where we were before we stopped the diet with Mike. It is so

frustrating. Better child but more seizures

and all so predictable. i talked this predictability over and over with the

docs/ naturos etc but no body seemed to

understand. All I can say is that after about a month off the diet, the night

time seizures stopped- however now 5

months off the diet the day time seizures are back with a vengence. I'm not sure

which is worse. We are still drug free

but just hanging here by a thread. Once you go off the diet there are few

options other than drugs.

Just an idea however which helped us a bit at one point- Calcium has a calming

effect on the nervous system. When I

started giving Mike Ca before bed the seizures settled - now Mike is one of

those honeymoon kids so it only worked for a

month or so but it was a month of much needed sleep)

I hope things improve for you. Like you we are battling a bad time now. Still

seems to correspond to the start of school.

We are thinking alot about allergies and have upped Mike's Vit C to help fight

allergies- hasn't helped alot but just

another idea.

Faye

DeEtte Person wrote:

> Well, it seems I have to write every 4-6 weeks with a

> new desparate cry. My brain is mush, so I need some

> thoughts from the " experts. "

>

> 's on a 3.6 ratio. She was doing VERY well after

> introducing digestive enzymes -- 13 seizure free days.

> That all went out the window. . . possibly due to a

> recurrance of the danged virus that started all this,

> seasonal allergies, both or none. She's begun her

> nightly seizure routine again. Before she would have

> one between 4 and 6 a.m. Wasn't a huge deal and she'd

> go back to sleep. Now it's 2-3 a night and last night

> I lost count. . . probably a dozen. She's also broken

> through with a few daytime seizures again. She hasn't

> slept in weeks -- and neither have I.

>

> Her ketones have always been lighter in the morning.

> Before this, she'd be light in the morning and

> moderate in the evening. This morning she was

> moderate (40-80 -- higher than usual) and when I

> checked at noon she was 160+. . . about 15 minutes

> later, she had another seizure. Now, I'm not sure

> which is better for her -- trace, small, moderate or

> heavy ketones.

>

> Truthfully, I've never really thought that the seizure

> control she's had on the diet has been due to ketosis

> -- I feel it's more due to a controlled diet and more

> even blood sugars -- except at night.

>

> I really have no idea what to do. I'm almost thinking

> of bagging the diet -- to do what, I don't know. My

> husband thinks that's crazy because she's so much

> better than she ever was on meds. That's very true

> from a behavioral and developmental and learning

> standpoint -- but the seizures are now worse. That's

> not his perception, but that's because he's asleep

> while all this is going on.

>

> I'm wondering what I should do about ketones. My

> first thought this morning was to raise the ratio --

> but again, her ketones were darker than usual -- so

> that doesn't seem right.

>

> Perhaps the digestive enzymes are making her more

> sensitive to things? These were suggested by our DAN

> doc and I really felt good about them -- still do, at

> a gut level. Perhaps it's something that we need to

> ride out.

>

> Does anyone have any idea about how to keep ketones

> consistent at night? My other query is whether

> there's anything that can be done -- naturally or. . .

> with medication (which would break my heart) to help

> her system calm down at night. Does anyone do AEDs

> only at night?

>

> I'm grasping at straws again. I imagine this too

> shall pass and we'll see a good seizure-free streak

> again. . .but the bottom line is that the diet isn't

> working and I'm just not sure what to do at this

> point.

>

> Appreciate any thoughts.--D

>

> =====

> DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

>

> " I know God would never give me more than I can handle. . .I just wish he

didn't trust me so much. " -- Mother Theresa

>

> __________________________________________________

>

[Guest guest]

DeEtte,

I thought I read that your daughter was doing a detox protocal. I wonder if the seizures are due to that? My daughter is also seeing a Naturopath and we are trying to make her gut well and remove toxins. But after a couple of weeks on probiotics, herbs, and homeopathics her seizures increased dramatically. The doc said her body wasn't able to eliminate the toxins fast enough and was reacting to them. So we cut way back on the homeopathics, added chlorella (it is supposed to bind to the toxins and aid in their elimination) and she is much better. The detox process is going to be much slower than I had hoped. Also during this time her ketones were bouncing around but her ph became more alkaline. Bloodwork showed it to be 6.5. Doc said the alkalinity was due to green herbals she was getting, but neither of us could figure out if that was why the ketones were not stable.

One herbal remedy that we used that helped calm the nervous system is Tilia Tomentosa (silver linden buds).

Sandy, 's mom

cloudy days again. . .

Well, it seems I have to write every 4-6 weeks with anew desparate cry. My brain is mush, so I need somethoughts from the "experts."'s on a 3.6 ratio. She was doing VERY well afterintroducing digestive enzymes -- 13 seizure free days.That all went out the window. . . possibly due to arecurrance of the danged virus that started all this,seasonal allergies, both or none. She's begun hernightly seizure routine again. Before she would haveone between 4 and 6 a.m. Wasn't a huge deal and she'dgo back to sleep. Now it's 2-3 a night and last nightI lost count. . . probably a dozen. She's also brokenthrough with a few daytime seizures again. She hasn'tslept in weeks -- and neither have I.Her ketones have always been lighter in the morning. Before this, she'd be light in the morning andmoderate in the evening. This morning she wasmoderate (40-80 -- higher than usual) and when Ichecked at noon she was 160+. . . about 15 minuteslater, she had another seizure. Now, I'm not surewhich is better for her -- trace, small, moderate orheavy ketones.Truthfully, I've never really thought that the seizurecontrol she's had on the diet has been due to ketosis-- I feel it's more due to a controlled diet and moreeven blood sugars -- except at night.I really have no idea what to do. I'm almost thinkingof bagging the diet -- to do what, I don't know. Myhusband thinks that's crazy because she's so muchbetter than she ever was on meds. That's very truefrom a behavioral and developmental and learningstandpoint -- but the seizures are now worse. That'snot his perception, but that's because he's asleepwhile all this is going on. I'm wondering what I should do about ketones. Myfirst thought this morning was to raise the ratio --but again, her ketones were darker than usual -- sothat doesn't seem right.Perhaps the digestive enzymes are making her moresensitive to things? These were suggested by our DANdoc and I really felt good about them -- still do, ata gut level. Perhaps it's something that we need toride out.Does anyone have any idea about how to keep ketonesconsistent at night? My other query is whetherthere's anything that can be done -- naturally or. . .with medication (which would break my heart) to helpher system calm down at night. Does anyone do AEDsonly at night? I'm grasping at straws again. I imagine this tooshall pass and we'll see a good seizure-free streakagain. . .but the bottom line is that the diet isn'tworking and I'm just not sure what to do at thispoint.Appreciate any thoughts.--D=====DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ"I know God would never give me more than I can handle. . .I just wish he didn't trust me so much." -- Mother Theresa__________________________________________________

[Guest guest]

D -

Just thought I'd pass along a little encouragement....I feel like I could

have written the same email....seizures early morning....ketones

bouncing....hard to know which end is up. Thinking of you guys and wish I

could help. You are not alone

Hang in there -

Barb Swoyer and Jake, fellow mush brain

cloudy days again. . .

> Well, it seems I have to write every 4-6 weeks with a

> new desparate cry. My brain is mush, so I need some

> thoughts from the " experts. "

[Guest guest]

Hi DeEtte,

Wish I knew what to say to you. I hadn't been reading my mail

because we are going thro' a bad patch, hope things are better

now. We are also in about the same position.

I had a good feeling about the d.enzymes too and Rohan

had a good few months over the Summer hols. Then he had a night

sz and woke up with a bad back nearly a month ago. Since then he's

had some sz which affect his left side more (usually it's the right)

and

seems to take longer to recover. Before our good spell it was only

night sz, but now there are daytime ones as well.

I just don't know what to do. He has also lost about 6 lb in the last

month. The ratio is 2.2 and the ketones bounce about. They seem

to be higher when he has the sz. I tried giving CLO and decided

ketones were higher and more sz, so stopped. His Back X rays have

shown a loss of density and we are waiting to see the dr.

I want to raise the calories as well as maybe go to 2.1 on the ratio,

but don't know what to do first.

I think flax is supposed to steady the ketones. Have you tried it with

? Rohan doesn't respond well to flax. Ketones go higher and

he seizes more. De, you might be correct about the D.Enzs increasing

the acidity - Rohan's pH is lower than what it was before. It's gone

to about 6 or less from being 6.5.

One thing is. we've run out of L-carnitor, but the last

levels were within limits so no chance of seeing whether it'll help

again.

Today Rohan is at home and had sz just after breakfast

and lunch.

Does anyone know why this could be?

I just wish I knew what to do or make any suggestions for those of us

in the same boat.

Saro....Rohan's mum

DeEtte Person wrote:

> Well, it seems I have to write every 4-6 weeks with a

> new desparate cry. My brain is mush, so I need some

> thoughts from the "experts."

>

> 's on a 3.6 ratio. She was doing VERY well after

> introducing digestive enzymes -- 13 seizure free days.

> That all went out the window. . . possibly due to a

> recurrance of the danged virus that started all this,

> seasonal allergies, both or none. She's begun her

> nightly seizure routine again. Before she would have

> one between 4 and 6 a.m. Wasn't a huge deal and she'd

> go back to sleep. Now it's 2-3 a night and last night

> I lost count. . . probably a dozen. She's also broken

> through with a few daytime seizures again. She hasn't

> slept in weeks -- and neither have I.

>

> Her ketones have always been lighter in the morning.

> Before this, she'd be light in the morning and

> moderate in the evening. This morning she was

> moderate (40-80 -- higher than usual) and when I

> checked at noon she was 160+. . . about 15 minutes

> later, she had another seizure. Now, I'm not sure

> which is better for her -- trace, small, moderate or

> heavy ketones.

>

> Truthfully, I've never really thought that the seizure

> control she's had on the diet has been due to ketosis

> -- I feel it's more due to a controlled diet and more

> even blood sugars -- except at night.

>

> I really have no idea what to do. I'm almost thinking

> of bagging the diet -- to do what, I don't know. My

> husband thinks that's crazy because she's so much

> better than she ever was on meds. That's very true

> from a behavioral and developmental and learning

> standpoint -- but the seizures are now worse. That's

> not his perception, but that's because he's asleep

> while all this is going on.

>

> I'm wondering what I should do about ketones. My

> first thought this morning was to raise the ratio --

> but again, her ketones were darker than usual -- so

> that doesn't seem right.

>

> Perhaps the digestive enzymes are making her more

> sensitive to things? These were suggested by our DAN

> doc and I really felt good about them -- still do, at

> a gut level. Perhaps it's something that we need to

> ride out.

>

> Does anyone have any idea about how to keep ketones

> consistent at night? My other query is whether

> there's anything that can be done -- naturally or. . .

> with medication (which would break my heart) to help

> her system calm down at night. Does anyone do AEDs

> only at night?

>

> I'm grasping at straws again. I imagine this too

> shall pass and we'll see a good seizure-free streak

> again. . .but the bottom line is that the diet isn't

> working and I'm just not sure what to do at this

> point.

>

> Appreciate any thoughts.--D

>

> =====

> DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures

greatly reduced) and (, 4), sdale, AZ

>

> "I know God would never give me more than I can handle. . .I

just wish he didn't trust me so much." -- Mother Theresa

>

> __________________________________________________

>

[Guest guest]

Flurescent lights cause seizures in our daughter. Just a thought. Maybe

if your child sat close to a window at school. Do the seizures come at a

certain time, in a certain room? In the cafeteria?

Bill

kevin cooper wrote:

>

> Hi DeEtte

> You are exactly where we were before we stopped the diet with Mike. It is so

frustrating. Better child but more seizures

> and all so predictable. i talked this predictability over and over with the

docs/ naturos etc but no body seemed to

> understand. All I can say is that after about a month off the diet, the night

time seizures stopped- however now 5

> months off the diet the day time seizures are back with a vengence. I'm not

sure which is worse. We are still drug free

> but just hanging here by a thread. Once you go off the diet there are few

options other than drugs.

> Just an idea however which helped us a bit at one point- Calcium has a calming

effect on the nervous system. When I

> started giving Mike Ca before bed the seizures settled - now Mike is one of

those honeymoon kids so it only worked for a

> month or so but it was a month of much needed sleep)

> I hope things improve for you. Like you we are battling a bad time now. Still

seems to correspond to the start of school.

> We are thinking alot about allergies and have upped Mike's Vit C to help fight

allergies- hasn't helped alot but just

> another idea.

> Faye

>

> DeEtte Person wrote:

>

> > Well, it seems I have to write every 4-6 weeks with a

> > new desparate cry. My brain is mush, so I need some

> > thoughts from the " experts. "

> >

> > 's on a 3.6 ratio. She was doing VERY well after

> > introducing digestive enzymes -- 13 seizure free days.

> > That all went out the window. . . possibly due to a

> > recurrance of the danged virus that started all this,

> > seasonal allergies, both or none. She's begun her

> > nightly seizure routine again. Before she would have

> > one between 4 and 6 a.m. Wasn't a huge deal and she'd

> > go back to sleep. Now it's 2-3 a night and last night

> > I lost count. . . probably a dozen. She's also broken

> > through with a few daytime seizures again. She hasn't

> > slept in weeks -- and neither have I.

> >

> > Her ketones have always been lighter in the morning.

> > Before this, she'd be light in the morning and

> > moderate in the evening. This morning she was

> > moderate (40-80 -- higher than usual) and when I

> > checked at noon she was 160+. . . about 15 minutes

> > later, she had another seizure. Now, I'm not sure

> > which is better for her -- trace, small, moderate or

> > heavy ketones.

> >

> > Truthfully, I've never really thought that the seizure

> > control she's had on the diet has been due to ketosis

> > -- I feel it's more due to a controlled diet and more

> > even blood sugars -- except at night.

> >

> > I really have no idea what to do. I'm almost thinking

> > of bagging the diet -- to do what, I don't know. My

> > husband thinks that's crazy because she's so much

> > better than she ever was on meds. That's very true

> > from a behavioral and developmental and learning

> > standpoint -- but the seizures are now worse. That's

> > not his perception, but that's because he's asleep

> > while all this is going on.

> >

> > I'm wondering what I should do about ketones. My

> > first thought this morning was to raise the ratio --

> > but again, her ketones were darker than usual -- so

> > that doesn't seem right.

> >

> > Perhaps the digestive enzymes are making her more

> > sensitive to things? These were suggested by our DAN

> > doc and I really felt good about them -- still do, at

> > a gut level. Perhaps it's something that we need to

> > ride out.

> >

> > Does anyone have any idea about how to keep ketones

> > consistent at night? My other query is whether

> > there's anything that can be done -- naturally or. . .

> > with medication (which would break my heart) to help

> > her system calm down at night. Does anyone do AEDs

> > only at night?

> >

> > I'm grasping at straws again. I imagine this too

> > shall pass and we'll see a good seizure-free streak

> > again. . .but the bottom line is that the diet isn't

> > working and I'm just not sure what to do at this

> > point.