Re: Frustration Setting In....

[Guest guest]

what time does she get her last meal or snack at night? Sometimes a late

night snack will keep ketones up over night. Another possibility (not

sure how well it works) would be raising ratio just for breakfast.

Also flax oil works well for raising ketones for some kids. But some

can't handle it. If you use it make sure you get a quality brand like

Omega or Barleans, no lingans (they are the seed portion, very good for

you, but have carbs) and start off with very small amount slowing upping

amount so you don't upset her tummy

Or the lamictal might be the culprit and you may not get rid of the

seizures until the drug is gone.

Lot of help I am right?

tuckerwing@... wrote:

> Langan had another seizure at 5:30am today. I am so frustrated. On

> the positive side, her next urine output (at 7:45am) showed very low

> ketones so maybe there is the clue as to what is going on. On the

> negative side, this is more seizures than we have had EVER since

> getting diagnosed, they are lasting long enough to require diastat

> every time, we went from using diastat twice in a year to using it 3

> times a week and I hate that AND this seizure was 9 1/2 hours after

> her last lamictal dose so that theory gets thrown out of the window.

> Ugh. My husband is ready to throw in the towel but I am not a

> quitter and I feel in my heart that this can work for us. 16 days

> seizure free was not my imagination, and during that time Langan's

> ketones stayed high. Now we are having trouble keeping them high in

> the early morning hours and, while I know that is somewhat normal, it

> is when the seizures seem to be happening. SOOOO any bright ideas?

> We raised the ratio from 3.4:1 to 3.6:1 and she has been on the new

> ratio only one day. She is still on 75mg of lamictal a day, 25 mg 3X

> a day. I was going to wean but decided to wait and get the ketones

> consistent first. Who knows if that was the right thing or not.

> Would changing her fat source help? We mainly use cream, butter and

> corn oil for her fats. Did I imagine reading somewhere that there

> are different kinds of fats and some break down slower and keep

> ketosis longer? Anyone an expert on that stuff? If only I had known

> about all this way back I could have skipped law school and gotten a

> degree in chamistry and maybe I would sort of understand this

> stuff.... ; )

>

> Can someone please tell me that this is not the time to give up hope

> and that those 16 days meant SOMETHING....

>

> Thanks!

>

> , mom to Langan, 19 months old on Friday and 3 weeks on keto

[Guest guest]

Thanks, . You are a lot of help. At least it is nice to know I am not

the only one having trouble figuring out the mystery. If only the neuro were

interested.... Our dietician is pretty good. Hopefully she'll call back

tonight and give me some direction. I want to wean the lamictal but am a little

nervous about what it'll do when we're already having more seizures than before

the diet.... Why can't this be simple???

Thanks!

Re: Frustration Setting In....

what time does she get her last meal or snack at night? Sometimes a late

night snack will keep ketones up over night. Another possibility (not

sure how well it works) would be raising ratio just for breakfast.

Also flax oil works well for raising ketones for some kids. But some

can't handle it. If you use it make sure you get a quality brand like

Omega or Barleans, no lingans (they are the seed portion, very good for

you, but have carbs) and start off with very small amount slowing upping

amount so you don't upset her tummy

Or the lamictal might be the culprit and you may not get rid of the

seizures until the drug is gone.

Lot of help I am right?

tuckerwing@... wrote:

> Langan had another seizure at 5:30am today. I am so frustrated. On

> the positive side, her next urine output (at 7:45am) showed very low

> ketones so maybe there is the clue as to what is going on. On the

> negative side, this is more seizures than we have had EVER since

> getting diagnosed, they are lasting long enough to require diastat

> every time, we went from using diastat twice in a year to using it 3

> times a week and I hate that AND this seizure was 9 1/2 hours after

> her last lamictal dose so that theory gets thrown out of the window.

> Ugh. My husband is ready to throw in the towel but I am not a

> quitter and I feel in my heart that this can work for us. 16 days

> seizure free was not my imagination, and during that time Langan's

> ketones stayed high. Now we are having trouble keeping them high in

> the early morning hours and, while I know that is somewhat normal, it

> is when the seizures seem to be happening. SOOOO any bright ideas?

> We raised the ratio from 3.4:1 to 3.6:1 and she has been on the new

> ratio only one day. She is still on 75mg of lamictal a day, 25 mg 3X

> a day. I was going to wean but decided to wait and get the ketones

> consistent first. Who knows if that was the right thing or not.

> Would changing her fat source help? We mainly use cream, butter and

> corn oil for her fats. Did I imagine reading somewhere that there

> are different kinds of fats and some break down slower and keep

> ketosis longer? Anyone an expert on that stuff? If only I had known

> about all this way back I could have skipped law school and gotten a

> degree in chamistry and maybe I would sort of understand this

> stuff.... ; )

>

> Can someone please tell me that this is not the time to give up hope

> and that those 16 days meant SOMETHING....

>

> Thanks!

>

> , mom to Langan, 19 months old on Friday and 3 weeks on keto

[Guest guest]

No one can give you a definitive answer, just suggestions. Fine tuning

involves, after eliminating errors, raising or lowering calories and

ratio among other things. Usually for morning seizures people give a

late night snack possibly at a higher ratio. To get calories correct,

you have to take careful weights and adjust gradually up or down. Some

people take blood ketone measurements, we didn't. People usually wait

one or two weeks to evaluate the effects of any changes.

I can't quite see how you are ready to give up after 3 weeks. You are

just getting started. Many people have problems with constipation,

vomiting and reflux at this point.

People normally give a 3 or 6 month commitment to the diet. Didn't your

husband agree to that before you started?

How long do they last that you use diastat?

If you went 16 days seizure free at the beginning of the diet, then you

are far ahead of most people of this list and have an excellent chance

of the diet working, but you must work hard and be patient.

Bill

tuckerwing@... wrote:

> Langan had another seizure at 5:30am today. I am so frustrated. On

> the positive side, her next urine output (at 7:45am) showed very low

> ketones so maybe there is the clue as to what is going on. On the

> negative side, this is more seizures than we have had EVER since

> getting diagnosed, they are lasting long enough to require diastat

> every time, we went from using diastat twice in a year to using it 3

> times a week and I hate that AND this seizure was 9 1/2 hours after

> her last lamictal dose so that theory gets thrown out of the window.

> Ugh. My husband is ready to throw in the towel but I am not a

> quitter and I feel in my heart that this can work for us. 16 days

> seizure free was not my imagination, and during that time Langan's

> ketones stayed high. Now we are having trouble keeping them high in

> the early morning hours and, while I know that is somewhat normal, it

> is when the seizures seem to be happening. SOOOO any bright ideas?

> We raised the ratio from 3.4:1 to 3.6:1 and she has been on the new

> ratio only one day. She is still on 75mg of lamictal a day, 25 mg 3X

> a day. I was going to wean but decided to wait and get the ketones

> consistent first. Who knows if that was the right thing or not.

> Would changing her fat source help? We mainly use cream, butter and

> corn oil for her fats. Did I imagine reading somewhere that there

> are different kinds of fats and some break down slower and keep

> ketosis longer? Anyone an expert on that stuff? If only I had known

> about all this way back I could have skipped law school and gotten a

> degree in chamistry and maybe I would sort of understand this

> stuff.... ; )

>

> Can someone please tell me that this is not the time to give up hope

> and that those 16 days meant SOMETHING....

>

> Thanks!

>

> , mom to Langan, 19 months old on Friday and 3 weeks on keto

>

>

> " 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 to follow up. I am not sure if you are the same , but if you

are the one who mentioned having trouble with constipation, then that

could easily explain why you were sucessful at the beginning and are now

having difficulties. Think about it. The diet works by having food

ingested and digested in a regular fashion. That doesn't happen with

constipation. You will get pretty universal agreement that the diet

doesn't work if constipation is severe.

Bill

p.s. Ditch the husband, not the diet. Just kidding.

tuckerwing@... wrote:

> Langan had another seizure at 5:30am today. I am so frustrated. On

> the positive side, her next urine output (at 7:45am) showed very low

> ketones so maybe there is the clue as to what is going on. On the

> negative side, this is more seizures than we have had EVER since

> getting diagnosed, they are lasting long enough to require diastat

> every time, we went from using diastat twice in a year to using it 3

> times a week and I hate that AND this seizure was 9 1/2 hours after

> her last lamictal dose so that theory gets thrown out of the window.

> Ugh. My husband is ready to throw in the towel but I am not a

> quitter and I feel in my heart that this can work for us. 16 days

> seizure free was not my imagination, and during that time Langan's

> ketones stayed high. Now we are having trouble keeping them high in

> the early morning hours and, while I know that is somewhat normal, it

> is when the seizures seem to be happening. SOOOO any bright ideas?

> We raised the ratio from 3.4:1 to 3.6:1 and she has been on the new

> ratio only one day. She is still on 75mg of lamictal a day, 25 mg 3X

> a day. I was going to wean but decided to wait and get the ketones

> consistent first. Who knows if that was the right thing or not.

> Would changing her fat source help? We mainly use cream, butter and

> corn oil for her fats. Did I imagine reading somewhere that there

> are different kinds of fats and some break down slower and keep

> ketosis longer? Anyone an expert on that stuff? If only I had known

> about all this way back I could have skipped law school and gotten a

> degree in chamistry and maybe I would sort of understand this

> stuff.... ; )

>

> Can someone please tell me that this is not the time to give up hope

> and that those 16 days meant SOMETHING....

>

> Thanks!

>

> , mom to Langan, 19 months old on Friday and 3 weeks on keto

>

>

> " 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]

Hi ,

I can definitely understand your frustration. I'm thankful we

had great success early on, because I'm not sure how long I would

have plugged away at this without seeing immediate benefit. I have

to keep reminding myself now during this fine tuning to be patient,

not my strong suit (ask my husband!), and I've seen what the diet can

do for Macie! Even though Langan's seizures are worse now, I can't

help but feel like there's an explanation. As Bill said, the

constipation could be a lingering issue, and I read some of your

posts about her tummy issues....

Some of the parents here on the group also use a form of the

Specific Carbohydrate Diet, usually used for autism. There is strong

support for the idea that the stomach/gut and brain are closely

linked. Makes sense to me, and it makes sense that anything that

interferes with how the food is processed into their systems (and

eliminated) would interfere with the success of the diet. Rhonda

Ackerman has given a lot of good information on this for the group.

Her daughter is on a combination of Keto, Atkins, and the Specific

Carbohydrate Diet.

I think the Lamictal could definitely still be an issue. The

diet completely changes everything about metabolism. As I've told

you before, I don't think doctors take into account that it changes

the way their bodies use these drugs, too. She was on such a small

dose before you started, right? This may sound drastic, but what if

you stopped the diet, got her stable again with her constipation

issues, and then slowly weaned her off the lamictal? Once the

lamictal is gone, you could go after the diet again, knowing the

medication issue was resolved. I know this is MUCH easier said than

done, and you can't predict what weaning the lamictal and being

without any treatment for a short period might do. I know that

restarting the diet won't be such a big deal for you all as it is for

some, because you did the mini-fast at home, and she got into ketosis

easily.

I also know how very frustrating it is for you to be trying to

figure all this out for yourself without much guidance from the keto

team. I saw on a list once that there is a program at Memphis. Do

you know anything about it, and would that be a possiblity to check

into doing it there?

Wishing you all the best. Keep us posted.

Glenna

[Guest guest]

We were instructed to give diastat after 4-5 minutes. Langan's seizures in the

past have only lasted 3-4 minutes. Now, even after the diastat, they are

lasting 9 minutes or so.

My husband and I made a commitment to try for a minimum of 3 months no matter

what. I think it is just really hard for him to see Langan having these long

seizures every other day when she was going 7-10 days before the diet and the

seizures were shorter.

There is no chance I am giving up. I have no plans to do that- I was just

venting a little frustration after a nasty seizure and yet another night of no

sleep. It gets really hard when we have no support from our neuro- it is

impossible to reach him. We were willing to travel to a keto center that was

more user friendly, but no other center would take us (including Hopkins) b/c we

had a Hopkins trained neuro here. So it feels like I am playing God with my

child and I am terrified about that. But giving up is not in our blood.

Thanks for the suggestions. I am hoping the dietician can call back today with

some guidance as well. At least we had a seizure-free night last night. = )

Re: Frustration Setting In....

No one can give you a definitive answer, just suggestions. Fine tuning

involves, after eliminating errors, raising or lowering calories and

ratio among other things. Usually for morning seizures people give a

late night snack possibly at a higher ratio. To get calories correct,

you have to take careful weights and adjust gradually up or down. Some

people take blood ketone measurements, we didn't. People usually wait

one or two weeks to evaluate the effects of any changes.

I can't quite see how you are ready to give up after 3 weeks. You are

just getting started. Many people have problems with constipation,

vomiting and reflux at this point.

People normally give a 3 or 6 month commitment to the diet. Didn't your

husband agree to that before you started?

How long do they last that you use diastat?

If you went 16 days seizure free at the beginning of the diet, then you

are far ahead of most people of this list and have an excellent chance

of the diet working, but you must work hard and be patient.

Bill

tuckerwing@... wrote:

> Langan had another seizure at 5:30am today. I am so frustrated. On

> the positive side, her next urine output (at 7:45am) showed very low

> ketones so maybe there is the clue as to what is going on. On the

> negative side, this is more seizures than we have had EVER since

> getting diagnosed, they are lasting long enough to require diastat

> every time, we went from using diastat twice in a year to using it 3

> times a week and I hate that AND this seizure was 9 1/2 hours after

> her last lamictal dose so that theory gets thrown out of the window.

> Ugh. My husband is ready to throw in the towel but I am not a

> quitter and I feel in my heart that this can work for us. 16 days

> seizure free was not my imagination, and during that time Langan's

> ketones stayed high. Now we are having trouble keeping them high in

> the early morning hours and, while I know that is somewhat normal, it

> is when the seizures seem to be happening. SOOOO any bright ideas?

> We raised the ratio from 3.4:1 to 3.6:1 and she has been on the new

> ratio only one day. She is still on 75mg of lamictal a day, 25 mg 3X

> a day. I was going to wean but decided to wait and get the ketones

> consistent first. Who knows if that was the right thing or not.

> Would changing her fat source help? We mainly use cream, butter and

> corn oil for her fats. Did I imagine reading somewhere that there

> are different kinds of fats and some break down slower and keep

> ketosis longer? Anyone an expert on that stuff? If only I had known

> about all this way back I could have skipped law school and gotten a

> degree in chamistry and maybe I would sort of understand this

> stuff.... ; )

>

> Can someone please tell me that this is not the time to give up hope

> and that those 16 days meant SOMETHING....

>

> Thanks!

>

> , mom to Langan, 19 months old on Friday and 3 weeks on keto

>

>

> " 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]

Thanks, Glenda. I need to check into that specific carb diet. Patience has

never been my strong point, either. Luckily, being stubborn as a mule is on the

top 5 list for me so we'll see this through.

I would love to go to Memphis or just about anywhere. My father-in-law is at

Brown so we tried to go there. We also tried Boston Children's since it is

right there. Neither wanted to take us b/c of the concern about follow-up.

Well, makes a lot of sense to be 15 minutes away from the keto neuro when you

can't get to him, doesn't it??? I knew this would be a problem- it's the reason

we left this neuro department initially. But it was here or nowhere so here we

are. I spend all of my time researching this stuff and making medical decisions

for my child's BRAIN.... That is a scary thing for us. And my husband, being

the son of a doctor, is a little nervous about that, too. But we've gone too

far to turn back now and we're going to figure this out.

Thanks for the tip about specific carb. I need to check that out.

Hope all is better with Macie. Did you guys get in to Cincinnati? We'll miss

sharing docs with you but understand completely. PS Has he returned yesterday

morning's email yet?? Of course not!!

Re: Frustration Setting In....

Hi ,

I can definitely understand your frustration. I'm thankful we

had great success early on, because I'm not sure how long I would

have plugged away at this without seeing immediate benefit. I have

to keep reminding myself now during this fine tuning to be patient,

not my strong suit (ask my husband!), and I've seen what the diet can

do for Macie! Even though Langan's seizures are worse now, I can't

help but feel like there's an explanation. As Bill said, the

constipation could be a lingering issue, and I read some of your

posts about her tummy issues....

Some of the parents here on the group also use a form of the

Specific Carbohydrate Diet, usually used for autism. There is strong

support for the idea that the stomach/gut and brain are closely

linked. Makes sense to me, and it makes sense that anything that

interferes with how the food is processed into their systems (and

eliminated) would interfere with the success of the diet. Rhonda

Ackerman has given a lot of good information on this for the group.

Her daughter is on a combination of Keto, Atkins, and the Specific

Carbohydrate Diet.

I think the Lamictal could definitely still be an issue. The

diet completely changes everything about metabolism. As I've told

you before, I don't think doctors take into account that it changes

the way their bodies use these drugs, too. She was on such a small

dose before you started, right? This may sound drastic, but what if

you stopped the diet, got her stable again with her constipation

issues, and then slowly weaned her off the lamictal? Once the

lamictal is gone, you could go after the diet again, knowing the

medication issue was resolved. I know this is MUCH easier said than

done, and you can't predict what weaning the lamictal and being

without any treatment for a short period might do. I know that

restarting the diet won't be such a big deal for you all as it is for

some, because you did the mini-fast at home, and she got into ketosis

easily.

I also know how very frustrating it is for you to be trying to

figure all this out for yourself without much guidance from the keto

team. I saw on a list once that there is a program at Memphis. Do

you know anything about it, and would that be a possiblity to check

into doing it there?

Wishing you all the best. Keep us posted.

Glenna

" 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]

When we started the diet, the seizures changed dramatically in their

appearance. The worst was when we weaned the drug. But even then we had

other periods when we had many many seizures. We never did figure out

what was the reason for them. When we gave Ativan, nothing much happened

for several hours. I wonder if the diet affects how even these types of

interventions operate. When my daughter had many seizures in a row, if

she was breathing okay and recovering, more or less, in between

seizures, it didn't seem to harm her.

If you look in Dr. Freeman's book, you can see that some patients had a

big increase in seizures upon starting the diet and then gained good

control. In his study, there were more people seizure free after 12

months, than after 6 months.

It's more like playing enstein than God, which is even more scary.

God has an idea about what is going to happen. Just remember that the

doctors' don't know much about what is going on with your child.

Bill

Tucker wrote:

> We were instructed to give diastat after 4-5 minutes. Langan's

> seizures in the past have only lasted 3-4 minutes. Now, even after

> the diastat, they are lasting 9 minutes or so.

>

> My husband and I made a commitment to try for a minimum of 3 months

> no matter what. I think it is just really hard for him to see Langan

> having these long seizures every other day when she was going 7-10

> days before the diet and the seizures were shorter.

>

> There is no chance I am giving up. I have no plans to do that- I was

> just venting a little frustration after a nasty seizure and yet

> another night of no sleep. It gets really hard when we have no

> support from our neuro- it is impossible to reach him. We were

> willing to travel to a keto center that was more user friendly, but

> no other center would take us (including Hopkins) b/c we had a

> Hopkins trained neuro here. So it feels like I am playing God with

> my child and I am terrified about that. But giving up is not in our

> blood.

>

> Thanks for the suggestions. I am hoping the dietician can call back

> today with some guidance as well. At least we had a seizure-free

> night last night. = )

>

> Re: Frustration Setting In....

>

[Guest guest]

I know I am an emotional wreck when reading this message makes me cry.... What

a wimp...

I hope your daughter is doing well. I HATE that these innocent little children

have to go through this and we are so helpless to stop it. Well, maybe not

helpless if we can figure out the mystery of this diet, but you know what I

mean.

My big worry (well, one of many) is that no one can tell me how or if or under

what circumstances a seizure causes damage. I have heard everything from " it

would take many hours " to " more than 5 minutes is dangerous " so after every

seizure we hold our breath. For some reason Langan usually seems MORE alert and

interactive after seizures but that could be me just so relieved that she is ok.

Who knows.

I spend much of my time with my nose in Dr. Freeman's book but didn't notice the

stats about kids getting better control over the long haul. I think those 16

days just gave me some false hope that it would be this easy. Apparently it

won't be. But I know that anything worth having is worth working for and I

would walk through fire, eat glass, WHATEVER to get Langan some seizure control

so we'll keep on keeping on. Thanks for the tip on the spaghetti squash. That

was a big oops. I wonder if it has had an effect.... So many factors. I do

feel like Dr. enstein.... Yikes.... But my daughter is way cuter than his

monster... ; )

Thanks for everything!

Re: Frustration Setting In....

>

" 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

------------------------------------------------------------------------------