Re: Breakthrough Seizures

July 9, 2001

--- Cam wrote:

> I sent a posting a couple of weeks ago about my son

> Connor. I only heard back from one person so I'm

> sending it out again because we need HELP!

I saw your post but I am lost as to what to tell you.

There are a lot of ladies on this list that will be

able to help you with ideas. They have given me some

good advice in the past. Sorry I can't be of any help

to you.

=====

-- A very thankfull mom of Keri Marie. An 11 year old happy kid who is

developmentally delayed, has epilepsy, been on the Ketogenic Diet for 15 months,

and now in the process of weaning meds. We are about to imbark on the road to

homeschooling, so please keep us in your prayers.

__________________________________________________

July 9, 2001

Hi,

1) Did you know that you can expect seizures from the

wean for up to 3 months (and some say 6 months) after

weaning meds?

2) Are you spacing out his fluids?

3) What does he get for breakfast (ketones are

delayed)?

We use processed meats and it doesn't lower Chases

ketones at all.

mom to Chase, 8 1/2 yrs old,

ketokid since 3/00

med-free and still having seizures

__________________________________________________

July 9, 2001

Becky:

I can't help much, but I'll input what I can. It sounds like you've done a

lot of detective work.

Our my dietician was not keen on us using processed meat. I'm not sure why

exactly except perhaps all the additives in it may affect things. So that

would perhaps be something to try to eliminate.

Are you on the MCT diet? I noticed you used MCT oil. I think that

increasing that and/or flax should bring ketones back up (based on what I've

read on the list).

Good luck.

>I sent a posting a couple of weeks ago about my son Connor. I only heard

>back from one person so I'm sending it out again because we need HELP!

>Connor has been on the diet since 10/00 and seizure free the whole time up

>until 1 month ago. Now he is having about 10 small myoclonic jerks a day.

>We finished weanning Depakote about 1 month before the seizures started up.

>Connor was still on phenobarb. We have ruled out any mistakes, taken away

>the sugar free pop, The Dr. upped the phenobarb because it wasn't at a

>theraputic level, changed the ratio from a 4:1 to 4.5:1 and we spent 30

>hours fasting two weeks ago. None of this has helped. Connor's

>betahydroxybutyrate level has gone from 69 when he was seizure free down to

>43 at the start of the seizures and was 54 at the end of the fast. His

>urine keytones are 80-160 in the morn, 40-80 in the afternoon and 80-160 at

>night. The next plan is to try lowering his calories and see if that helps.

>I also am going to add some flax oil and increase the MCT by a couple of

>grams. I also wonder if too much processed meat can lower keytones? Any

>suggestions will be great.

>Becky

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July 9, 2001

Dear Becky:

Sorry I didn't answer you previously. We stopped Depakote cold turkey at a

high dose prior to starting the diet (the day of the diet initiation) For

the first 2 months he really suffered. It seemed to me to take 2 months to

clear his system. I have heard of it taking longer for other children. It

could be withdrawl seizures.

Another point when my son had been on the diet for approx 8 to 9 months he

needed a lower ratio-meaning he seizured with higher ketones. We now keep

him between 4 and 8 and he is seizure free. Have you checked his PH to

check for acidity. Has he gained weight-lost weight?

Another, Another point we tried the flax with very dramatic raise in

ketones-which we discovered raised his ketones too high. Go real slow with

it. We use MCT Oil as a calculated in snack between meals in his koolaid.

I have had wonderful results with it. If his ketones are too high lower it

by 1 ml, if he is too low raise it by 1 ml. It works very well for

us-although alot of other Mom's don't like it.

Hope this helps?? Sure hope you can stop those nasty seizures, it was so

hard when he wasn't seizure free-but if the seizures come back it is so

heartwrenching.

Hugs

Diane

Breakthrough Seizures

> I sent a posting a couple of weeks ago about my son Connor. I only heard

back from one person so I'm sending it out again because we need HELP!

Connor has been on the diet since 10/00 and seizure free the whole time up

until 1 month ago. Now he is having about 10 small myoclonic jerks a day. We

finished weanning Depakote about 1 month before the seizures started up.

Connor was still on phenobarb. We have ruled out any mistakes, taken away

the sugar free pop, The Dr. upped the phenobarb because it wasn't at a

theraputic level, changed the ratio from a 4:1 to 4.5:1 and we spent 30

hours fasting two weeks ago. None of this has helped. Connor's

betahydroxybutyrate level has gone from 69 when he was seizure free down to

43 at the start of the seizures and was 54 at the end of the fast. His urine

keytones are 80-160 in the morn, 40-80 in the afternoon and 80-160 at night.

The next plan is to try lowering his calories and see if that helps. I also

am going to add some flax oil and increase the MCT by a couple of grams. I

also wonder if too much processed meat can lower keytones? Any suggestions

will be great.

> Becky

>

> --

>

> " 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

>

July 9, 2001

,

gets 2 equal meals twice a day. I put them in the blender,

add 10% to compensate for what I can't get scraped out. Then I weigh

the mixture to total the number of grams per each meal. I put the

other meal in the fridge for later.

for ex.

chicken breast 13g

28.6g

carrots-cooked 7g

15.4g

daily sup

1

daily enzyme 1

olive oil

19g 41.8

RCF

9g

I then weigh 39 g and add his daily nutrients. His RCF he drinks

with stevia out of a nose cup. I try and give him 100 -150 ml's of

water at meal time. We try and give him 100-150 ml's 3 other times

a day at least 1-2 hours apart.Do you think that we would be getting worse

seizures 3-4 weeks after weaning a drug? We had no visible effects

after the klonopin wean , but are seeing things now.

My neuro told me to increase meds, but we experienced some positive

results at the 3:1 and now that we are upping the ratio the seizures are

upping. I said I want to use diastat and fine tune, not add meds.

I called my Dietitain and she doesn't want to make any changes at this

time. She is going to talk to the neuro about it tomorrow.

I also got a gluclose blood monitor tonite on e-bay, so I can check

how it is when seizures are acting up.

Dianna

Ciolli wrote:

Hi,

1) Did you know that you can expect seizures from the

wean for up to 3 months (and some say 6 months) after

weaning meds?

2) Are you spacing out his fluids?

3) What does he get for breakfast (ketones are

delayed)?

We use processed meats and it doesn't lower Chases

ketones at all.

mom to Chase, 8 1/2 yrs old,

ketokid since 3/00

med-free and still having seizures

__________________________________________________

July 9, 2001

,

gets 2 equal meals twice a day. I put them in the blender,

add 10% to compensate for what I can't get scraped out. Then I weigh

the mixture to total the number of grams per each meal. I put the

other meal in the fridge for later.

for ex.

chicken breast 13g

28.6g

carrots-cooked 7g

15.4g

daily sup

1

daily enzyme 1

olive oil

19g 41.8

RCF

9g

I then weigh 39 g and add his daily nutrients. His RCF he drinks

with stevia out of a nose cup. I try and give him 100 -150 ml's of

water at meal time. We try and give him 100-150 ml's 3 other times

a day at least 1-2 hours apart.Do you think that we would be getting worse

seizures 3-4 weeks after weaning a drug? We had no visible effects

after the klonopin wean , but are seeing things now.

My neuro told me to increase meds, but we experienced some positive

results at the 3:1 and now that we are upping the ratio the seizures are

upping. I said I want to use diastat and fine tune, not add meds.

I called my Dietitain and she doesn't want to make any changes at this

time. She is going to talk to the neuro about it tomorrow.

I also got a gluclose blood monitor tonite on e-bay, so I can check

how it is when seizures are acting up.

Dianna

Ciolli wrote:

Hi,

1) Did you know that you can expect seizures from the

wean for up to 3 months (and some say 6 months) after

weaning meds?

2) Are you spacing out his fluids?

3) What does he get for breakfast (ketones are

delayed)?

We use processed meats and it doesn't lower Chases

ketones at all.

mom to Chase, 8 1/2 yrs old,

ketokid since 3/00

med-free and still having seizures

__________________________________________________

July 9, 2001

Well, I'm not really sure what to say, either. . .but a few things jump out at me. . .

1) It's possible that this is related to the Depakote wean. Seems I've read here that problems can go on from 3-6 months as the drug is getting out of the system.

2) 4.5:1 is EXTREMELY HIGH. . . there are many kids on this list who do better on much lower ratios. It's possible that Connor's one of them. This isn't like the traditional view of medicine where you continue to up the medication. . .sometimes you continually lower the ratio.

3) Seems strange to have a ketone dip in the afternoon. How many meals is he getting. I've now got my daughter on breakfast, mid-morning snack (split meal plan with afternoon snack), lunch, afternoon snack, dinner and macademia nut snack at bedtime.

4) Be careful with the flax. . .go slowly. The flax is going to up his ketones and it's possible that he actually needs lower ketones.

5) I don't know if the processed meat can lower ketones. . .but he could be sensitive to the preservatives. Are you keeping a food journal to notice any other sensitivities he might have? He doesn't necessarily need to be allergic to something to be sensitive to it. For example, my daughter cannot tolerate cheese -- seizures every time. Yet, she's not allergic to it per skin allergy tests. It's just that something sets her off. Could be the same with the preservatives in the meats.

Have you tried anything like B6, digestive enzymes, taurine or any other supplements? Just trying to brainstorm with you. Keep posting -- sorry you didn't get many repsonses before. . .hopefully this time you will! Take care.--DeEtte

-----Original Message-----From: Cam Sent: Monday, July 09, 2001 6:59 PMTo: ketogenic Subject: Breakthrough SeizuresI sent a posting a couple of weeks ago about my son Connor. I only heard back from one person so I'm sending it out again because we need HELP! Connor has been on the diet since 10/00 and seizure free the whole time up until 1 month ago. Now he is having about 10 small myoclonic jerks a day. We finished weanning Depakote about 1 month before the seizures started up. Connor was still on phenobarb. We have ruled out any mistakes, taken away the sugar free pop, The Dr. upped the phenobarb because it wasn't at a theraputic level, changed the ratio from a 4:1 to 4.5:1 and we spent 30 hours fasting two weeks ago. None of this has helped. Connor's betahydroxybutyrate level has gone from 69 when he was seizure free down to 43 at the start of the seizures and was 54 at the end of the fast. His urine keytones are 80-160 in the morn, 40-80 in the afternoon and 80-160 at night. The next plan is to try lowering his calories and see if that helps. I also am going to add some flax oil and increase the MCT by a couple of grams. I also wonder if too much processed meat can lower keytones? Any suggestions will be great.Becky-- "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

July 9, 2001

Hi Becky.....

Maybe I was the one who answered your former post.... at least I think I did. I still have to say that 4.5:1 is really a SUPER high ratio. I am curious as to why they UPPED it....... if he was already on a 4:1 ratio and started having breakthroughs, he may have been at a point where he actually needed a LOWER ratio. Our dietician states that when kids have been on the diet somewhere between 6 to 8 months, they almost always need to have the ratio lowered a tad...... not to mention that they almost NEVER put a kid on a ratio even as high as 4:1. Another thing that comes to mind is that the diet changes the way the meds are metabolized which can cause some problems but it doesn't sound like he is toxic from the phenobarb, which would be unlikely anyway...... just sounds like more phenobarb wasn't the answer. No wonder it wasn't helping before if it was below therapeutic level but...... it still isn't helping now at the higher dosage, right? I gotta just reiterate that if I were in your shoes, I would push to try a lower ratio. I don't think you have a problem with keeping ketones high..... seems they are really high more often than not. That afternoon dip could just be a difference in how much water he's had to drink and not really affecting seizure control, just what you see on the stick. Truly.... for some kids, they need to keep the ketones LOWER...... and seize more if they get too ketotic. I know there are some kids on this list that need to stay down around 40.... or no higher than 80..... or they have breakthroughs. Hope some more parents give you some input.

Patti, mom to Katera

Breakthrough Seizures

I sent a posting a couple of weeks ago about my son Connor. I only heard back from one person so I'm sending it out again because we need HELP! Connor has been on the diet since 10/00 and seizure free the whole time up until 1 month ago. Now he is having about 10 small myoclonic jerks a day. We finished weanning Depakote about 1 month before the seizures started up. Connor was still on phenobarb. We have ruled out any mistakes, taken away the sugar free pop, The Dr. upped the phenobarb because it wasn't at a theraputic level, changed the ratio from a 4:1 to 4.5:1 and we spent 30 hours fasting two weeks ago. None of this has helped. Connor's betahydroxybutyrate level has gone from 69 when he was seizure free down to 43 at the start of the seizures and was 54 at the end of the fast. His urine keytones are 80-160 in the morn, 40-80 in the afternoon and 80-160 at night. The next plan is to try lowering his calories and see if that helps. I also am going to add some flax oil and increase the MCT by a couple of grams. I also wonder if too much processed meat can lower keytones? Any suggestions will be great.Becky-- "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

July 9, 2001

Terry,

These are my thoughts. Two meals a day is not very

much. Is he G-tube fed? I'm sorta out of my league

there, but drinking equal amounts of fluids every hour

(2 oz)is what Chase does.

According to our dietician, they can have withdrawal

seizures for up to 3 months after the last of a med

withdrawal.

Our rule is a 3 day rule, you normally have increased

seizures for 3 days, and if they are still increased

after 3 days, then you put the last amount you dropped

back and hold med weans off for a month.

Take a look at your words ... " we experienced some

positive results at the 3:1 and now that we are upping

the ratio the seizures are upping. " There are a lot

of children that can't deal with a higher ratio and

their seizures increase at a higher ratio. Maybe I've

overlooked something here, but why are you upping the

ratio?

See the trouble-shooting manual from the keto website

for info on where you want the blood sugar to be.

I think you should go with your gut. If you don't

want to add meds, don't. You have the final say, not

the neuro.

__________________________________________________

July 10, 2001

Hi becky

I'm not sure why but my son Mike developed all sorts of sensitivities a short

while into the diet. One of the first problem foods was bacon,hot dogs. bologna-

all processed stuff. We had alot of ketone bouncing before I removed all

processed stuff. We also had incredible problems with artificial sweeteners and

all food coloring- if you are using Kool-aid or jello these may be your

problems. Once I eliminated all these things improved remarkably for us. Note

stevia is a good safer sweetener- although even a few people report problems

with it- it seems better than the aspartame stuff. There is hidden sweeteners,

colorings, msg and nitrates in everything. We changed to a very pure diet- and

while it was less exciting for Mike- seizures improved alot.

Faye

Cam wrote:

> I sent a posting a couple of weeks ago about my son Connor. I only heard back

from one person so I'm sending it out again because we need HELP! Connor has

been on the diet since 10/00 and seizure free the whole time up until 1 month

ago. Now he is having about 10 small myoclonic jerks a day. We finished weanning

Depakote about 1 month before the seizures started up. Connor was still on

phenobarb. We have ruled out any mistakes, taken away the sugar free pop, The

Dr. upped the phenobarb because it wasn't at a theraputic level, changed the

ratio from a 4:1 to 4.5:1 and we spent 30 hours fasting two weeks ago. None of

this has helped. Connor's betahydroxybutyrate level has gone from 69 when he was

seizure free down to 43 at the start of the seizures and was 54 at the end of

the fast. His urine keytones are 80-160 in the morn, 40-80 in the afternoon and

80-160 at night. The next plan is to try lowering his calories and see if that

helps. I also am going to add some flax oil and increase

> the MCT by a couple of grams. I also wonder if too much processed meat can

lower keytones? Any suggestions will be great.

> Becky

>

> --

>

> " 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

>

July 10, 2001