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Hi, .

Actually, Langan is not having trouble with the meal sizes. I was surprised

because before the diet she ate more than I did with each meal! Before we

changed keto centers and ratios, she was hungry sometimes and would refuse

to eat at other times. Now, she is pretty good with her meals, except that

she occasionally isn't hungry at all. I think that before she was going in

and out of ketosis and so her appetite was coming and going. (The meal

planner was apparently not accurate and her meals ranged, according to our

new dietician, from 2.8 to 3.8, even though we thought they were all 3.6).

I think it has something to do with ketosis suppressing appetite?? I have

actually thought that they may lower her calories soon to see what happens.

I have heard of older kids on even less. Langan is 20 months old and 22

pounds but looks much chunkier than that.

I hope all goes well with you and that your child adjusts soon! Good luck!

>

>Reply-To: ketogenic

>To: ketogenic

>Subject: Re: Thoughts?

>Date: Tue, 30 Mar 2004 09:22:08 -0800 (PST)

>

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Guest guest

Hi, .

Actually, Langan is not having trouble with the meal sizes. I was surprised

because before the diet she ate more than I did with each meal! Before we

changed keto centers and ratios, she was hungry sometimes and would refuse

to eat at other times. Now, she is pretty good with her meals, except that

she occasionally isn't hungry at all. I think that before she was going in

and out of ketosis and so her appetite was coming and going. (The meal

planner was apparently not accurate and her meals ranged, according to our

new dietician, from 2.8 to 3.8, even though we thought they were all 3.6).

I think it has something to do with ketosis suppressing appetite?? I have

actually thought that they may lower her calories soon to see what happens.

I have heard of older kids on even less. Langan is 20 months old and 22

pounds but looks much chunkier than that.

I hope all goes well with you and that your child adjusts soon! Good luck!

>

>Reply-To: ketogenic

>To: ketogenic

>Subject: Re: Thoughts?

>Date: Tue, 30 Mar 2004 09:22:08 -0800 (PST)

>

_________________________________________________________________

Check out MSN PC Safety & Security to help ensure your PC is protected and

safe. http://specials.msn.com/msn/security.asp

Link to comment
Share on other sites

Guest guest

Hi, .

Actually, Langan is not having trouble with the meal sizes. I was surprised

because before the diet she ate more than I did with each meal! Before we

changed keto centers and ratios, she was hungry sometimes and would refuse

to eat at other times. Now, she is pretty good with her meals, except that

she occasionally isn't hungry at all. I think that before she was going in

and out of ketosis and so her appetite was coming and going. (The meal

planner was apparently not accurate and her meals ranged, according to our

new dietician, from 2.8 to 3.8, even though we thought they were all 3.6).

I think it has something to do with ketosis suppressing appetite?? I have

actually thought that they may lower her calories soon to see what happens.

I have heard of older kids on even less. Langan is 20 months old and 22

pounds but looks much chunkier than that.

I hope all goes well with you and that your child adjusts soon! Good luck!

>

>Reply-To: ketogenic

>To: ketogenic

>Subject: Re: Thoughts?

>Date: Tue, 30 Mar 2004 09:22:08 -0800 (PST)

>

_________________________________________________________________

Check out MSN PC Safety & Security to help ensure your PC is protected and

safe. http://specials.msn.com/msn/security.asp

Link to comment
Share on other sites

Guest guest

I think the only way to know , is to maybe stop the wean and see if

the same pattern follows.

But it depends on which way you want to tackle it - like get rid of it

all, then give her a settling down period, or try and get things to settle

before you push on with weaning the last wee bit....

With the previous reductions as regular as they have been, you probably

haven't had time in between to see exactly what happens when you are not

touching the meds, so I personally think it is way to soon to consider

putting any back.

Pretty airy fairy answer I know, but basically there is no right answer in

this kind of situation, often it has to be trial and error either way before

you know really what the cause is/was of the remaining seizures.

I do know that our experience has been that the last of any of 's

med weans were always the toughest and most prolonged, you may be seeing a

bit of a cumulative withdrawl fallout happening from the last few reductions

that hasn't had time to settle yet, or you may on the other hand be seeing a

reaction in her that is saying - get rid of the last of this stuff, it is

aggravating, not helping my seizures....

Go with your gut is the only real advice I have, make a decision which way

to go, and if it doesn't sit right, then rethink and change the plan....

----- Original Message -----

> Hello all. I am hoping for some advice from the experts here. Langan

is down to 5 mg of lamictal- 2 1/2 in the a.m. and 2 1/2 in the p.m. If all

goes ok, we are planning to stop it completely on Sunday. We have been

reducing by 5 mg every week to 10 days for a while now, per our new keto

team's suggestion.

>

> Langan is continuing to have one of her " big " seizures every 4 days. We

are really seeing a pattern now. She will have two great days- no problems

at all and sleeps like a baby. Then she'll have a night where she can't

sleep- either tosses and turns or just plays but is really manic. The next

day, she'll have a seizure as soon as she is asleep for 30 minutes. The

next day, each nap and at night she will wake up after 30 minutes, either

crying or doing this shiver thing that we think is a simple partial. Then

2 days of nothing and then it repeats.

>

> Since lowering the lamictal this last time, we are also seeing periods

where she just seems to gloss over while sitting and playing. It's like

what I would think an absence seizure would look like except she still looks

around and it lasts several minutes- hard to explain but she is just sort of

" checked out " .

>

> So, could this be medicine related? It seems to me like something is

building up in her- whether there's some metabolic thing going on and

whatever it is she isn't breaking down or whatever is building up. So

scientific, I know, but it's what my gut tells me. Should I contact the

keto folks about this? I don't want them to tell me to up the meds but at

the same time I don't want to do anything that would hurt Langan. She seems

to be doing really well, development-wise, these days but I just know if we

could get these things under control she would do even better. She is on a

4:1 ratio right now, 4 meals, 860 calories. She is on prilosec for reflux

and that seems to be resolved. She is on cal-mag-zinc III and is now having

a BM every morning on her own.

>

> Any advice? Thanks!

>

> , mom to Langan, 20 months old and keto kid since 11/03 but with

new keto center since 3/9/04

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Share on other sites

Guest guest

I think the only way to know , is to maybe stop the wean and see if

the same pattern follows.

But it depends on which way you want to tackle it - like get rid of it

all, then give her a settling down period, or try and get things to settle

before you push on with weaning the last wee bit....

With the previous reductions as regular as they have been, you probably

haven't had time in between to see exactly what happens when you are not

touching the meds, so I personally think it is way to soon to consider

putting any back.

Pretty airy fairy answer I know, but basically there is no right answer in

this kind of situation, often it has to be trial and error either way before

you know really what the cause is/was of the remaining seizures.

I do know that our experience has been that the last of any of 's

med weans were always the toughest and most prolonged, you may be seeing a

bit of a cumulative withdrawl fallout happening from the last few reductions

that hasn't had time to settle yet, or you may on the other hand be seeing a

reaction in her that is saying - get rid of the last of this stuff, it is

aggravating, not helping my seizures....

Go with your gut is the only real advice I have, make a decision which way

to go, and if it doesn't sit right, then rethink and change the plan....

----- Original Message -----

> Hello all. I am hoping for some advice from the experts here. Langan

is down to 5 mg of lamictal- 2 1/2 in the a.m. and 2 1/2 in the p.m. If all

goes ok, we are planning to stop it completely on Sunday. We have been

reducing by 5 mg every week to 10 days for a while now, per our new keto

team's suggestion.

>

> Langan is continuing to have one of her " big " seizures every 4 days. We

are really seeing a pattern now. She will have two great days- no problems

at all and sleeps like a baby. Then she'll have a night where she can't

sleep- either tosses and turns or just plays but is really manic. The next

day, she'll have a seizure as soon as she is asleep for 30 minutes. The

next day, each nap and at night she will wake up after 30 minutes, either

crying or doing this shiver thing that we think is a simple partial. Then

2 days of nothing and then it repeats.

>

> Since lowering the lamictal this last time, we are also seeing periods

where she just seems to gloss over while sitting and playing. It's like

what I would think an absence seizure would look like except she still looks

around and it lasts several minutes- hard to explain but she is just sort of

" checked out " .

>

> So, could this be medicine related? It seems to me like something is

building up in her- whether there's some metabolic thing going on and

whatever it is she isn't breaking down or whatever is building up. So

scientific, I know, but it's what my gut tells me. Should I contact the

keto folks about this? I don't want them to tell me to up the meds but at

the same time I don't want to do anything that would hurt Langan. She seems

to be doing really well, development-wise, these days but I just know if we

could get these things under control she would do even better. She is on a

4:1 ratio right now, 4 meals, 860 calories. She is on prilosec for reflux

and that seems to be resolved. She is on cal-mag-zinc III and is now having

a BM every morning on her own.

>

> Any advice? Thanks!

>

> , mom to Langan, 20 months old and keto kid since 11/03 but with

new keto center since 3/9/04

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Share on other sites

Guest guest

I think the only way to know , is to maybe stop the wean and see if

the same pattern follows.

But it depends on which way you want to tackle it - like get rid of it

all, then give her a settling down period, or try and get things to settle

before you push on with weaning the last wee bit....

With the previous reductions as regular as they have been, you probably

haven't had time in between to see exactly what happens when you are not

touching the meds, so I personally think it is way to soon to consider

putting any back.

Pretty airy fairy answer I know, but basically there is no right answer in

this kind of situation, often it has to be trial and error either way before

you know really what the cause is/was of the remaining seizures.

I do know that our experience has been that the last of any of 's

med weans were always the toughest and most prolonged, you may be seeing a

bit of a cumulative withdrawl fallout happening from the last few reductions

that hasn't had time to settle yet, or you may on the other hand be seeing a

reaction in her that is saying - get rid of the last of this stuff, it is

aggravating, not helping my seizures....

Go with your gut is the only real advice I have, make a decision which way

to go, and if it doesn't sit right, then rethink and change the plan....

----- Original Message -----

> Hello all. I am hoping for some advice from the experts here. Langan

is down to 5 mg of lamictal- 2 1/2 in the a.m. and 2 1/2 in the p.m. If all

goes ok, we are planning to stop it completely on Sunday. We have been

reducing by 5 mg every week to 10 days for a while now, per our new keto

team's suggestion.

>

> Langan is continuing to have one of her " big " seizures every 4 days. We

are really seeing a pattern now. She will have two great days- no problems

at all and sleeps like a baby. Then she'll have a night where she can't

sleep- either tosses and turns or just plays but is really manic. The next

day, she'll have a seizure as soon as she is asleep for 30 minutes. The

next day, each nap and at night she will wake up after 30 minutes, either

crying or doing this shiver thing that we think is a simple partial. Then

2 days of nothing and then it repeats.

>

> Since lowering the lamictal this last time, we are also seeing periods

where she just seems to gloss over while sitting and playing. It's like

what I would think an absence seizure would look like except she still looks

around and it lasts several minutes- hard to explain but she is just sort of

" checked out " .

>

> So, could this be medicine related? It seems to me like something is

building up in her- whether there's some metabolic thing going on and

whatever it is she isn't breaking down or whatever is building up. So

scientific, I know, but it's what my gut tells me. Should I contact the

keto folks about this? I don't want them to tell me to up the meds but at

the same time I don't want to do anything that would hurt Langan. She seems

to be doing really well, development-wise, these days but I just know if we

could get these things under control she would do even better. She is on a

4:1 ratio right now, 4 meals, 860 calories. She is on prilosec for reflux

and that seems to be resolved. She is on cal-mag-zinc III and is now having

a BM every morning on her own.

>

> Any advice? Thanks!

>

> , mom to Langan, 20 months old and keto kid since 11/03 but with

new keto center since 3/9/04

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,

I would slow down and wait for Langan to " stabilize. " The last part of the

wean is the most difficult because you are weaning a higher percentage of

the medication then at the beginning. With Langan showing some developments

that may be seizure related, I would wait until they subside and then wean

only a fraction. We weaned tegretol at a similar pace. It set us up for

failure. The seizures came back with a vengence after the last drop. A

year later we still haven't weaned that last drop due to being afraid of

repeating what happened previously. We kept her off meds for 3 weeks and

she became nearly paralysed on the left side due to seizure activity. We

gave her back the small amount and the seizures nearly resolved. We are

actually now planning to try to wean the last little bit but we will not

rush it. I want to give it every chance to work even if it takes 6 months

to wean.

Rhonda

Mom to Shan, age 9, keto kid 2 years

Hello all. I am hoping for some advice from the experts here. Langan is

down to 5 mg of lamictal- 2 1/2 in the a.m. and 2 1/2 in the p.m. If all

goes ok, we are planning to stop it completely on Sunday. We have been

reducing by 5 mg every week to 10 days for a while now, per our new keto

team's suggestion.

Langan is continuing to have one of her " big " seizures every 4 days. We are

really seeing a pattern now. She will have two great days- no problems at

all and sleeps like a baby. Then she'll have a night where she can't sleep-

either tosses and turns or just plays but is really manic. The next day,

she'll have a seizure as soon as she is asleep for 30 minutes. The next

day, each nap and at night she will wake up after 30 minutes, either crying

or doing this shiver thing that we think is a simple partial. Then 2 days

of nothing and then it repeats.

Since lowering the lamictal this last time, we are also seeing periods where

she just seems to gloss over while sitting and playing. It's like what I

would think an absence seizure would look like except she still looks around

and it lasts several minutes- hard to explain but she is just sort of

" checked out " .

So, could this be medicine related? It seems to me like something is

building up in her- whether there's some metabolic thing going on and

whatever it is she isn't breaking down or whatever is building up. So

scientific, I know, but it's what my gut tells me. Should I contact the

keto folks about this? I don't want them to tell me to up the meds but at

the same time I don't want to do anything that would hurt Langan. She seems

to be doing really well, development-wise, these days but I just know if we

could get these things under control she would do even better. She is on a

4:1 ratio right now, 4 meals, 860 calories. She is on prilosec for reflux

and that seems to be resolved. She is on cal-mag-zinc III and is now having

a BM every morning on her own.

Any advice? Thanks!

, mom to Langan, 20 months old and keto kid since 11/03 but with new

keto center since 3/9/04

Link to comment
Share on other sites

Guest guest

,

I would slow down and wait for Langan to " stabilize. " The last part of the

wean is the most difficult because you are weaning a higher percentage of

the medication then at the beginning. With Langan showing some developments

that may be seizure related, I would wait until they subside and then wean

only a fraction. We weaned tegretol at a similar pace. It set us up for

failure. The seizures came back with a vengence after the last drop. A

year later we still haven't weaned that last drop due to being afraid of

repeating what happened previously. We kept her off meds for 3 weeks and

she became nearly paralysed on the left side due to seizure activity. We

gave her back the small amount and the seizures nearly resolved. We are

actually now planning to try to wean the last little bit but we will not

rush it. I want to give it every chance to work even if it takes 6 months

to wean.

Rhonda

Mom to Shan, age 9, keto kid 2 years

Hello all. I am hoping for some advice from the experts here. Langan is

down to 5 mg of lamictal- 2 1/2 in the a.m. and 2 1/2 in the p.m. If all

goes ok, we are planning to stop it completely on Sunday. We have been

reducing by 5 mg every week to 10 days for a while now, per our new keto

team's suggestion.

Langan is continuing to have one of her " big " seizures every 4 days. We are

really seeing a pattern now. She will have two great days- no problems at

all and sleeps like a baby. Then she'll have a night where she can't sleep-

either tosses and turns or just plays but is really manic. The next day,

she'll have a seizure as soon as she is asleep for 30 minutes. The next

day, each nap and at night she will wake up after 30 minutes, either crying

or doing this shiver thing that we think is a simple partial. Then 2 days

of nothing and then it repeats.

Since lowering the lamictal this last time, we are also seeing periods where

she just seems to gloss over while sitting and playing. It's like what I

would think an absence seizure would look like except she still looks around

and it lasts several minutes- hard to explain but she is just sort of

" checked out " .

So, could this be medicine related? It seems to me like something is

building up in her- whether there's some metabolic thing going on and

whatever it is she isn't breaking down or whatever is building up. So

scientific, I know, but it's what my gut tells me. Should I contact the

keto folks about this? I don't want them to tell me to up the meds but at

the same time I don't want to do anything that would hurt Langan. She seems

to be doing really well, development-wise, these days but I just know if we

could get these things under control she would do even better. She is on a

4:1 ratio right now, 4 meals, 860 calories. She is on prilosec for reflux

and that seems to be resolved. She is on cal-mag-zinc III and is now having

a BM every morning on her own.

Any advice? Thanks!

, mom to Langan, 20 months old and keto kid since 11/03 but with new

keto center since 3/9/04

Link to comment
Share on other sites

Guest guest

,

I would slow down and wait for Langan to " stabilize. " The last part of the

wean is the most difficult because you are weaning a higher percentage of

the medication then at the beginning. With Langan showing some developments

that may be seizure related, I would wait until they subside and then wean

only a fraction. We weaned tegretol at a similar pace. It set us up for

failure. The seizures came back with a vengence after the last drop. A

year later we still haven't weaned that last drop due to being afraid of

repeating what happened previously. We kept her off meds for 3 weeks and

she became nearly paralysed on the left side due to seizure activity. We

gave her back the small amount and the seizures nearly resolved. We are

actually now planning to try to wean the last little bit but we will not

rush it. I want to give it every chance to work even if it takes 6 months

to wean.

Rhonda

Mom to Shan, age 9, keto kid 2 years

Hello all. I am hoping for some advice from the experts here. Langan is

down to 5 mg of lamictal- 2 1/2 in the a.m. and 2 1/2 in the p.m. If all

goes ok, we are planning to stop it completely on Sunday. We have been

reducing by 5 mg every week to 10 days for a while now, per our new keto

team's suggestion.

Langan is continuing to have one of her " big " seizures every 4 days. We are

really seeing a pattern now. She will have two great days- no problems at

all and sleeps like a baby. Then she'll have a night where she can't sleep-

either tosses and turns or just plays but is really manic. The next day,

she'll have a seizure as soon as she is asleep for 30 minutes. The next

day, each nap and at night she will wake up after 30 minutes, either crying

or doing this shiver thing that we think is a simple partial. Then 2 days

of nothing and then it repeats.

Since lowering the lamictal this last time, we are also seeing periods where

she just seems to gloss over while sitting and playing. It's like what I

would think an absence seizure would look like except she still looks around

and it lasts several minutes- hard to explain but she is just sort of

" checked out " .

So, could this be medicine related? It seems to me like something is

building up in her- whether there's some metabolic thing going on and

whatever it is she isn't breaking down or whatever is building up. So

scientific, I know, but it's what my gut tells me. Should I contact the

keto folks about this? I don't want them to tell me to up the meds but at

the same time I don't want to do anything that would hurt Langan. She seems

to be doing really well, development-wise, these days but I just know if we

could get these things under control she would do even better. She is on a

4:1 ratio right now, 4 meals, 860 calories. She is on prilosec for reflux

and that seems to be resolved. She is on cal-mag-zinc III and is now having

a BM every morning on her own.

Any advice? Thanks!

, mom to Langan, 20 months old and keto kid since 11/03 but with new

keto center since 3/9/04

Link to comment
Share on other sites

Guest guest

Thanks so much, . I am really having a tough time with this. Langan

had another seizure last night- the second time since we sped up the wean

that she has had them on consecutive days. I really hope it is the wean.

My husband is a wreck and is ready to get back on the meds. We compromised

with an agreement that I would call the neuro, but now I am worried that

she'll say the same thing. I really don't think we'll ever know unless we

try the diet off the meds but it is so hard to see her go through this in

the meantime. Her seizures are so LONG now- almost 10 minutes. They were

much shorter pre-diet but the post-ictal that lasted 12 hours is now gone.

Who knows what the right answer is. I lobbied with the nurse to get the

neuro to agree that we just need to slow down the wean, so now I'm waiting

to see what she says. Can 5 mg really make that much difference? Part of

me thinks it can't, but then if it can't then how can it be causing such bad

withdrawal? Just seems like it should be easier than this....

Thanks for the support! It means a lot.

>

>Reply-To: ketogenic

>To: <ketogenic >

>Subject: Re: Thoughts?

>Date: Wed, 31 Mar 2004 17:30:52 +1200

>

_________________________________________________________________

Find a broadband plan that fits. Great local deals on high-speed Internet

access.

https://broadband.msn.com/?pgmarket=en-us/go/onm00200360ave/direct/01/

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Guest guest

Thanks so much, . I am really having a tough time with this. Langan

had another seizure last night- the second time since we sped up the wean

that she has had them on consecutive days. I really hope it is the wean.

My husband is a wreck and is ready to get back on the meds. We compromised

with an agreement that I would call the neuro, but now I am worried that

she'll say the same thing. I really don't think we'll ever know unless we

try the diet off the meds but it is so hard to see her go through this in

the meantime. Her seizures are so LONG now- almost 10 minutes. They were

much shorter pre-diet but the post-ictal that lasted 12 hours is now gone.

Who knows what the right answer is. I lobbied with the nurse to get the

neuro to agree that we just need to slow down the wean, so now I'm waiting

to see what she says. Can 5 mg really make that much difference? Part of

me thinks it can't, but then if it can't then how can it be causing such bad

withdrawal? Just seems like it should be easier than this....

Thanks for the support! It means a lot.

>

>Reply-To: ketogenic

>To: <ketogenic >

>Subject: Re: Thoughts?

>Date: Wed, 31 Mar 2004 17:30:52 +1200

>

_________________________________________________________________

Find a broadband plan that fits. Great local deals on high-speed Internet

access.

https://broadband.msn.com/?pgmarket=en-us/go/onm00200360ave/direct/01/

Link to comment
Share on other sites

Guest guest

Thanks so much, . I am really having a tough time with this. Langan

had another seizure last night- the second time since we sped up the wean

that she has had them on consecutive days. I really hope it is the wean.

My husband is a wreck and is ready to get back on the meds. We compromised

with an agreement that I would call the neuro, but now I am worried that

she'll say the same thing. I really don't think we'll ever know unless we

try the diet off the meds but it is so hard to see her go through this in

the meantime. Her seizures are so LONG now- almost 10 minutes. They were

much shorter pre-diet but the post-ictal that lasted 12 hours is now gone.

Who knows what the right answer is. I lobbied with the nurse to get the

neuro to agree that we just need to slow down the wean, so now I'm waiting

to see what she says. Can 5 mg really make that much difference? Part of

me thinks it can't, but then if it can't then how can it be causing such bad

withdrawal? Just seems like it should be easier than this....

Thanks for the support! It means a lot.

>

>Reply-To: ketogenic

>To: <ketogenic >

>Subject: Re: Thoughts?

>Date: Wed, 31 Mar 2004 17:30:52 +1200

>

_________________________________________________________________

Find a broadband plan that fits. Great local deals on high-speed Internet

access.

https://broadband.msn.com/?pgmarket=en-us/go/onm00200360ave/direct/01/

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Share on other sites

Guest guest

Thanks, Rhonda. Can such a small amount of meds really cause this much

trouble? This is scary stuff! Langan has been on AEDs since she was 6

weeks old. I just want to see what she is like without them. But nothing

is worth putting her in danger. I hate this!

>

>Reply-To: ketogenic

>To: <ketogenic >

>Subject: RE: Thoughts?

>Date: Wed, 31 Mar 2004 21:18:55 +1000

>

_________________________________________________________________

MSN Toolbar provides one-click access to Hotmail from any Web page – FREE

download! http://toolbar.msn.com/go/onm00200413ave/direct/01/

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Guest guest

Thanks, Rhonda. Can such a small amount of meds really cause this much

trouble? This is scary stuff! Langan has been on AEDs since she was 6

weeks old. I just want to see what she is like without them. But nothing

is worth putting her in danger. I hate this!

>

>Reply-To: ketogenic

>To: <ketogenic >

>Subject: RE: Thoughts?

>Date: Wed, 31 Mar 2004 21:18:55 +1000

>

_________________________________________________________________

MSN Toolbar provides one-click access to Hotmail from any Web page – FREE

download! http://toolbar.msn.com/go/onm00200413ave/direct/01/

Link to comment
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Guest guest

Thanks, Rhonda. Can such a small amount of meds really cause this much

trouble? This is scary stuff! Langan has been on AEDs since she was 6

weeks old. I just want to see what she is like without them. But nothing

is worth putting her in danger. I hate this!

>

>Reply-To: ketogenic

>To: <ketogenic >

>Subject: RE: Thoughts?

>Date: Wed, 31 Mar 2004 21:18:55 +1000

>

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I believe 5 mgs did make a difference with , it seems like near the

end - the last bits are the hardest for the body to let go, down to the real

nitty gritty as far as blood levels/addiction etc goes. Not just with

lamictal, with most meds, but lamictal was no exception as far as we were

concerned.

I think if it were me I would wait a bit longer to do that last wean you

were planning on in the weekend, any more cumulative withdrawals (if this is

what the seizures are of course, no one knows for sure) could confuse

matters even further. They may still not be withdrawal related, they may

instead be saying 'it is time for the next reduction' but I personally think

it is a bigger risk reducing again right now, than not.

But - I don't know all of Langan's history, and it is a bit different

trying to figure out the best way to go when it is not your own kiddie that

you have watched day and night to be able to guage reactions.

I have lived this one though , as many of us on here have - to reduce

or not to reduce to aid the diet, ugh, I hate it! Right now I have no choice

but to keep on is current med regime, so for the first time in ages,

I am not waking up every day with that decision, but you can bet that in the

future my posts will be closely mirroring yours again....

See what your Drs have to say - you never know, they may actually say

something that helps with your decision, stranger things have happened :)

----- Original Message -----

> Thanks so much, . I am really having a tough time with this.

Langan

> had another seizure last night- the second time since we sped up the

wean

> that she has had them on consecutive days. I really hope it is the

wean.

> My husband is a wreck and is ready to get back on the meds. We

compromised

> with an agreement that I would call the neuro, but now I am worried that

> she'll say the same thing. I really don't think we'll ever know unless

we

> try the diet off the meds but it is so hard to see her go through this

in

> the meantime. Her seizures are so LONG now- almost 10 minutes. They

were

> much shorter pre-diet but the post-ictal that lasted 12 hours is now

gone.

> Who knows what the right answer is. I lobbied with the nurse to get the

> neuro to agree that we just need to slow down the wean, so now I'm

waiting

> to see what she says. Can 5 mg really make that much difference? Part

of

> me thinks it can't, but then if it can't then how can it be causing such

bad

> withdrawal? Just seems like it should be easier than this....

>

> Thanks for the support! It means a lot.

>

>

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