Re: Help--need info on Lamictal

[Guest guest]

Dear

I'm sorry to hear the diet isn't working out. At least you know

you've given it your best shot.

This was our experience with lamictal pre-diet and may not apply to

you when lamictal is acting alone.

Pre-diet, lamictal was introduced to Isabella's drug regime after

depakote alone was proving unsuccessful. (According to her nuero, a

small amount of lamictal can boost the effectiveness of depakote

usually without boosting the adverse side effects of depakote. It's

like having more depakote without the risk of toxicity.)

Isabella was on 400 mg of depakote and 80 mg of lamictal. With every

increase in lamictal we experienced a brief honeymoon period -

anything between 5 days to a few weeks - then things would return

to " uncontrolled " . So it really wasn't useful but we kept trying to

juggle things hoping to get the balance right. Whilst on lamictal

pre-diet there were minimal adverse side effects. We have a feeling

it exaggerated her myoclonics and made her quite jittery at times.

One thing we did observe is that it had a nice upper effect - almost

counteracting the sedative effect of epilim. I thought of it as

artificial or heightened intelligence and was more noticeable in the

honeymoon periods we experienced and lessened once the dose level

stabilised. (This is actually one of the reasons her neuro likes the

drug because it can have this effect and make some children more

alert.)

For us, lamictal on the diet was another story - I grew to despise

the stuff.

Anyway, I hope this helps even a bit. Let us know how things go.

With kind regards, le, Australia

Mum to Isabella - keto kid since November 2000

> The diet is not working and the doctor has said that our next step

is to try

> Lamictal. I know I've read many horror stories about Lamictal and

it's

> weaning, but I didn't think they applied to me so I didn't save

them. Could

> anyone out there who has any experiences (both good and bad) with

it, please

> post. You can email me privately if you want, or put it on the

group.

>

> Thanks a bunch.

>

>

>

______________________________________________________________________

___

> Get Your Private, Free E-mail from MSN Hotmail at

http://www.hotmail.com.

[Guest guest]

Hannah had been taking Lamictal for more thnan 2 years when we weaned it

late last year. She was taking 100mg am and 100mg pm. Neuro suggested

weaning 50mg per week, meaning she'd be off it in a month, but we noticed a

few extra partial sz after each drop, and each time we waited till Hannah

had returned to " normal " pre-drop sz frequency. In the end it took 3.5

months. Ten days after the final dose was given Hannah had a 30second tonic

clonic sz, and over the next 2.5 months they became more frequent (up to

about 10 per week) and longer lasting (up to 10 minutes), and we used rectal

valium a couple of times. I knew they were withdrawal sz as nothing else had

changed, and Hannah had not had tonic clonic sz for well over 2 years. There

was no tapering off for these tonic clonics, they just stopped all of a

sudden, and we havent seen any since. Hannah has about the same sz control,

is more alert, and is generally more settled than when using lamictal. I'm

so glad she's off it, and never realised how it affected her until it was

removed.

( Hannah's mum, Australia)

Help--need info on Lamictal

> The diet is not working and the doctor has said that our next step is to

try

> Lamictal. I know I've read many horror stories about Lamictal and it's

> weaning, but I didn't think they applied to me so I didn't save them.

Could

> anyone out there who has any experiences (both good and bad) with it,

please

> post. You can email me privately if you want, or put it on the group.

>

> Thanks a bunch.

>

>

> _________________________________________________________________________

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

>

>

> " 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]

Hannah had been taking Lamictal for more thnan 2 years when we weaned it

late last year. She was taking 100mg am and 100mg pm. Neuro suggested

weaning 50mg per week, meaning she'd be off it in a month, but we noticed a

few extra partial sz after each drop, and each time we waited till Hannah

had returned to " normal " pre-drop sz frequency. In the end it took 3.5

months. Ten days after the final dose was given Hannah had a 30second tonic

clonic sz, and over the next 2.5 months they became more frequent (up to

about 10 per week) and longer lasting (up to 10 minutes), and we used rectal

valium a couple of times. I knew they were withdrawal sz as nothing else had

changed, and Hannah had not had tonic clonic sz for well over 2 years. There

was no tapering off for these tonic clonics, they just stopped all of a

sudden, and we havent seen any since. Hannah has about the same sz control,

is more alert, and is generally more settled than when using lamictal. I'm

so glad she's off it, and never realised how it affected her until it was

removed.

( Hannah's mum, Australia)

Help--need info on Lamictal

> The diet is not working and the doctor has said that our next step is to

try

> Lamictal. I know I've read many horror stories about Lamictal and it's

> weaning, but I didn't think they applied to me so I didn't save them.

Could

> anyone out there who has any experiences (both good and bad) with it,

please

> post. You can email me privately if you want, or put it on the group.

>

> Thanks a bunch.

>

>

> _________________________________________________________________________

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

>

>

> " 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]

Lamictal was the fourth drug we tried. My daughter was on it for about 10 months -- just got off it two weeks ago.

Immediately, I noticed that she became aggressive and very restless. She also started having night terrors -- had never had a single one until a few days after starting Lamictal. She'd wake up with a blood-curdling scream. . . we'd run to her room, hug her and she'd go right back to sleep. . . meanwhile we (me, my husband and her younger sister who sleeps in her room would lie awake trembling for the rest of the night). It was a horrible way to be awakened. She began having nighttime seizures on Lamictal, too -- which goes along with some of the things I've heard on this list. She started hitting a lot and would do odd things like bang her head against things. With all this said, it was the best of the worst, in terms of side effects. But, we never had decent control on it. The only drug that ever gave us control was Topomax -- but that rendered her virtually like an infant.

She started Topomax in August of 2000. We began weaning in March 2001. We took three months to wean 150 mg./day. Our neuro had suggested one tablet a week. We went 1/2 tablet a week and sometimes more slowly. She had withdrawl seizures -- including one grand mal that required diastat -- and went through a myriad of behavioral quirks that we're still working through.

Now that she's off, she seems to be a bit clearer cognitively and her speech is better -- but we're still dealing with behavior issues. She's also having a seizure between 4 and 6 a.m. that we can't "shake" -- we're hoping it's withdrawl, but it's now been over 2 weeks. I saw that e-mailed you -- the tonic clonics that Hannah started off Lamictal took a couple months to work their way out.

Sorry to paint a rather bleak picture. . .have to say I haven't heard much good about Lamictal (heard much better about Zonagram, which would have been our next drug option). . . but, as we know so well. . .everyone's different.

You say the diet's not working. . . I'm assuming you feel you've exhausted all the fine tuning options and various supplement options (B6, digestive enzymes, lowering/raising ratio, food allergies, etc.). Most times that's not something a doctor, or even a dietician will offer. . . . but there are a lot of options. You know what's best. Best of luck.--DeEtte

-----Original Message-----From: McLauchlan Sent: Monday, July 09, 2001 2:36 PMTo: ketogenic Subject: Help--need info on LamictalThe diet is not working and the doctor has said that our next step is to try Lamictal. I know I've read many horror stories about Lamictal and it's weaning, but I didn't think they applied to me so I didn't save them. Could anyone out there who has any experiences (both good and bad) with it, please post. You can email me privately if you want, or put it on the group.Thanks a bunch._________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. "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]

Lamictal was the fourth drug we tried. My daughter was on it for about 10 months -- just got off it two weeks ago.

Immediately, I noticed that she became aggressive and very restless. She also started having night terrors -- had never had a single one until a few days after starting Lamictal. She'd wake up with a blood-curdling scream. . . we'd run to her room, hug her and she'd go right back to sleep. . . meanwhile we (me, my husband and her younger sister who sleeps in her room would lie awake trembling for the rest of the night). It was a horrible way to be awakened. She began having nighttime seizures on Lamictal, too -- which goes along with some of the things I've heard on this list. She started hitting a lot and would do odd things like bang her head against things. With all this said, it was the best of the worst, in terms of side effects. But, we never had decent control on it. The only drug that ever gave us control was Topomax -- but that rendered her virtually like an infant.

She started Topomax in August of 2000. We began weaning in March 2001. We took three months to wean 150 mg./day. Our neuro had suggested one tablet a week. We went 1/2 tablet a week and sometimes more slowly. She had withdrawl seizures -- including one grand mal that required diastat -- and went through a myriad of behavioral quirks that we're still working through.

Now that she's off, she seems to be a bit clearer cognitively and her speech is better -- but we're still dealing with behavior issues. She's also having a seizure between 4 and 6 a.m. that we can't "shake" -- we're hoping it's withdrawl, but it's now been over 2 weeks. I saw that e-mailed you -- the tonic clonics that Hannah started off Lamictal took a couple months to work their way out.

Sorry to paint a rather bleak picture. . .have to say I haven't heard much good about Lamictal (heard much better about Zonagram, which would have been our next drug option). . . but, as we know so well. . .everyone's different.

You say the diet's not working. . . I'm assuming you feel you've exhausted all the fine tuning options and various supplement options (B6, digestive enzymes, lowering/raising ratio, food allergies, etc.). Most times that's not something a doctor, or even a dietician will offer. . . . but there are a lot of options. You know what's best. Best of luck.--DeEtte

-----Original Message-----From: McLauchlan Sent: Monday, July 09, 2001 2:36 PMTo: ketogenic Subject: Help--need info on LamictalThe diet is not working and the doctor has said that our next step is to try Lamictal. I know I've read many horror stories about Lamictal and it's weaning, but I didn't think they applied to me so I didn't save them. Could anyone out there who has any experiences (both good and bad) with it, please post. You can email me privately if you want, or put it on the group.Thanks a bunch._________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. "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]

le:

Thank you for the information. You seem to indicate you had problems with

Lamictal on the diet. We are supposed to introduce Lamictal while we are

weaning from the diet. Do you think we'll have the same problems you had?

What were those problems?

>For us, lamictal on the diet was another story - I grew to despise

>the stuff.

_________________________________________________________________________

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[Guest guest]

:

Thanks for the response.

For the two years that Hannah was on it did you observe any side effects? I

assume you weaned it because she was on the diet and for no other reason, it

this true?

>Hannah had been taking Lamictal for more thnan 2 years when we weaned it

>late last year. Hannah has about the same sz control,

>is more alert, and is generally more settled than when using lamictal. >I'm

>so glad she's off it, and never realised how it affected her until >it was

>removed.

>

> ( Hannah's mum, Australia)

_________________________________________________________________________

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[Guest guest]

Dear Sandy:

Here are the warnings on Lamictal issue by Glaxo Wellcome-the manufacturer

Antiepileptic drug indicated for adjunctive therapy of partial seizures in

ADULTS with Epilepsy. These new warnings pertain to reports severe,

potentially life threatening rash including s- syndrome, and

rarely toxic epidermal necrolysis reported in association with the use of

Lamictal.

The revised labeling now includes a boxed warning which emphasizes that

Lamictal is not indicated for use in patients below 16 years.

Specifically reports from clinical trials suggest that as many as 1 in 50 to

1 in 100 pediatric patients treated with Lamictal develop a potentially

life-threatening rash, as compared with a rate of approx. 1 in every 1000

adults.

Other than age there are as yet no factors identified that are known to

predict the risk of occurrence of the severity of the rash associated with

Lamictal. There are suggestions that the risk may also increase by

coadministration with Valproic Acid, also exceeding the recommended dose

escalation,

Hypersensitivity reactions;

Hypersensitivity reactions some fatal or life threatening have also

occurred. Some of these reactions have included clinical features of

multiorgan dysfunction such as heptic abnormalities and evidence of

disseminated intravascular coagulation.

Sorry to give this to you-but it was my least favorite drug-to say the

least.

May-be the diet needs more fine tuning-I definitely would knock myself out

on the diet before I tried this drug.

Diane

Help--need info on Lamictal

> The diet is not working and the doctor has said that our next step is to

try

> Lamictal. I know I've read many horror stories about Lamictal and it's

> weaning, but I didn't think they applied to me so I didn't save them.

Could

> anyone out there who has any experiences (both good and bad) with it,

please

> post. You can email me privately if you want, or put it on the group.

>

> Thanks a bunch.

>

>

> _________________________________________________________________________

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

>

>

> " 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]

DeEtte:

Thanks for the response.

Yes, we have tried some fine tuning. As for the B6 I haven't tried it but

figured it wouldn't have to be paired with the diet. Am I wrong? I plan to

try it.

We have the added problem of a kid who is rebelling big time. For him it's

a quality of life thing (almost 12 years old, with no other medical problems

and he's afraid to be a regular kid because the seizures won't stop). We

have much worse control on the diet than off. At least before the diet he

wasn't afraid to do things like ride his bike, or even walk across the

street! It's really hard for my husband and me because we held out such

hope for the diet, but it's very hard on our son to be on the diet and have

to tolerate much more fine tuning. The neurologist has seen no improvement

at all and feels that any more fine tuning would just be torturing him for

no good reason.

I don't want to go back to drugs and all their side effects, but at this

time I don't think we have a choice. I hope we don't end up with side

effects as you have described them. I'm leary of starting Lamictal based on

what I've read, but we've exhausted a lot of other drugs.

>Now that she's off, she seems to be a bit clearer cognitively

I didn't think Lamictal dulled cognitive ability. For us Topamax was

horrible for this.

_________________________________________________________________________

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

[Guest guest]

DeEtte:

Thanks for the response.

Yes, we have tried some fine tuning. As for the B6 I haven't tried it but

figured it wouldn't have to be paired with the diet. Am I wrong? I plan to

try it.

We have the added problem of a kid who is rebelling big time. For him it's

a quality of life thing (almost 12 years old, with no other medical problems

and he's afraid to be a regular kid because the seizures won't stop). We

have much worse control on the diet than off. At least before the diet he

wasn't afraid to do things like ride his bike, or even walk across the

street! It's really hard for my husband and me because we held out such

hope for the diet, but it's very hard on our son to be on the diet and have

to tolerate much more fine tuning. The neurologist has seen no improvement

at all and feels that any more fine tuning would just be torturing him for

no good reason.

I don't want to go back to drugs and all their side effects, but at this

time I don't think we have a choice. I hope we don't end up with side

effects as you have described them. I'm leary of starting Lamictal based on

what I've read, but we've exhausted a lot of other drugs.

>Now that she's off, she seems to be a bit clearer cognitively

I didn't think Lamictal dulled cognitive ability. For us Topamax was

horrible for this.

_________________________________________________________________________

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

[Guest guest]

Diane:

Thanks for the information. I'm very confused right now. You're right,

this drug sounds dangerous! I will definitely call the neuro tomorrow

morning. I knew from reading things on this list that I didn't like

Lamictal (in my notes at home I had big *****'s beside my notes on it about

how awful everyone seemed to say it was). However in the Neuro's office

today she called it Lamotrigine and I didn't even connect the two or I would

have questioned her more than I did. Basically she said my choices were

extremely limited since we've tried just about all of the drugs for his type

of seizure (partial complex) and there were problems with all (except that

he's still on Dilantin and she wants to pair it with the Lamotrigine).

Tegretol worked wonderfully except that he became allergic to it. It had

" no " side effects for 4 years until his white blood count went very, very

low and we were told we had to take him off it. So here we are with few

options. I will be checking out the Epilepsycured group very closely and

trying B6 and I'll keep looking, but right now I'm just confused!

_________________________________________________________________________

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[Guest guest]

Diane:

Thanks for the information. I'm very confused right now. You're right,

this drug sounds dangerous! I will definitely call the neuro tomorrow

morning. I knew from reading things on this list that I didn't like

Lamictal (in my notes at home I had big *****'s beside my notes on it about

how awful everyone seemed to say it was). However in the Neuro's office

today she called it Lamotrigine and I didn't even connect the two or I would

have questioned her more than I did. Basically she said my choices were

extremely limited since we've tried just about all of the drugs for his type

of seizure (partial complex) and there were problems with all (except that

he's still on Dilantin and she wants to pair it with the Lamotrigine).

Tegretol worked wonderfully except that he became allergic to it. It had

" no " side effects for 4 years until his white blood count went very, very

low and we were told we had to take him off it. So here we are with few

options. I will be checking out the Epilepsycured group very closely and

trying B6 and I'll keep looking, but right now I'm just confused!

_________________________________________________________________________

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

[Guest guest]

Dear :

Can you tell us what has been happening with the diet? May-be we can help?

Have you ever heard of Clobazam-Frisum I believe-it is much less dangerous

than the Lamictal.

How many drugs had you tried before you started the diet? They could

possibly have caused digestion problems or may-be a ratio

change..............I'm sorry to confuse you but it was the Lamictal that

sent us to the diet after he got the rash. It was difficult to wean and

gave him nocturnal seizures and anxiety attacks etc.

Lean on this list, they are so intelligent. We were at 9 months on the

diet before we became seizure free. Believe it or not-the combination of

herbal supplements and the diet stopped Josh's seizures. We are now 125

days free and it is sooooooooooooooooo wonderful.

Please review your child's history and his diet experience for us.

Hugs

Diane

Re: Help--need info on Lamictal

> Diane:

> Thanks for the information. I'm very confused right now. You're right,

> this drug sounds dangerous! I will definitely call the neuro tomorrow

> morning. I knew from reading things on this list that I didn't like

> Lamictal (in my notes at home I had big *****'s beside my notes on it

about

> how awful everyone seemed to say it was). However in the Neuro's office

> today she called it Lamotrigine and I didn't even connect the two or I

would

> have questioned her more than I did. Basically she said my choices were

> extremely limited since we've tried just about all of the drugs for his

type

> of seizure (partial complex) and there were problems with all (except that

> he's still on Dilantin and she wants to pair it with the Lamotrigine).

> Tegretol worked wonderfully except that he became allergic to it. It had

> " no " side effects for 4 years until his white blood count went very, very

> low and we were told we had to take him off it. So here we are with few

> options. I will be checking out the Epilepsycured group very closely and

> trying B6 and I'll keep looking, but right now I'm just confused!

>

>

>

> _________________________________________________________________________

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

>

>

> " 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]

Lamictal was the last medication we tried with before deciding to do the diet. He did not react well to any of the medications, but his seizures increased the most when we tried to begin him on Lamictal. We were not even able to bring him up to a therapeutic level. He reacted to it immediately. At least it made the decision to start the diet pretty obvious!

I hope your child tolerates the Lamictal.

RE: Help--need info on Lamictal

Lamictal was the fourth drug we tried. My daughter was on it for about 10 months -- just got off it two weeks ago.

Immediately, I noticed that she became aggressive and very restless. She also started having night terrors -- had never had a single one until a few days after starting Lamictal. She'd wake up with a blood-curdling scream. . . we'd run to her room, hug her and she'd go right back to sleep. . . meanwhile we (me, my husband and her younger sister who sleeps in her room would lie awake trembling for the rest of the night). It was a horrible way to be awakened. She began having nighttime seizures on Lamictal, too -- which goes along with some of the things I've heard on this list. She started hitting a lot and would do odd things like bang her head against things. With all this said, it was the best of the worst, in terms of side effects. But, we never had decent control on it. The only drug that ever gave us control was Topomax -- but that rendered her virtually like an infant.

She started Topomax in August of 2000. We began weaning in March 2001. We took three months to wean 150 mg./day. Our neuro had suggested one tablet a week. We went 1/2 tablet a week and sometimes more slowly. She had withdrawl seizures -- including one grand mal that required diastat -- and went through a myriad of behavioral quirks that we're still working through.

Now that she's off, she seems to be a bit clearer cognitively and her speech is better -- but we're still dealing with behavior issues. She's also having a seizure between 4 and 6 a.m. that we can't "shake" -- we're hoping it's withdrawl, but it's now been over 2 weeks. I saw that e-mailed you -- the tonic clonics that Hannah started off Lamictal took a couple months to work their way out.

Sorry to paint a rather bleak picture. . .have to say I haven't heard much good about Lamictal (heard much better about Zonagram, which would have been our next drug option). . . but, as we know so well. . .everyone's different.

You say the diet's not working. . . I'm assuming you feel you've exhausted all the fine tuning options and various supplement options (B6, digestive enzymes, lowering/raising ratio, food allergies, etc.). Most times that's not something a doctor, or even a dietician will offer. . . . but there are a lot of options. You know what's best. Best of luck.--DeEtte

-----Original Message-----From: McLauchlan Sent: Monday, July 09, 2001 2:36 PMTo: ketogenic Subject: Help--need info on LamictalThe diet is not working and the doctor has said that our next step is to try Lamictal. I know I've read many horror stories about Lamictal and it's weaning, but I didn't think they applied to me so I didn't save them. Could anyone out there who has any experiences (both good and bad) with it, please post. You can email me privately if you want, or put it on the group.Thanks a bunch._________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. "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]

Lamictal was the last medication we tried with before deciding to do the diet. He did not react well to any of the medications, but his seizures increased the most when we tried to begin him on Lamictal. We were not even able to bring him up to a therapeutic level. He reacted to it immediately. At least it made the decision to start the diet pretty obvious!

I hope your child tolerates the Lamictal.

RE: Help--need info on Lamictal

Lamictal was the fourth drug we tried. My daughter was on it for about 10 months -- just got off it two weeks ago.

Immediately, I noticed that she became aggressive and very restless. She also started having night terrors -- had never had a single one until a few days after starting Lamictal. She'd wake up with a blood-curdling scream. . . we'd run to her room, hug her and she'd go right back to sleep. . . meanwhile we (me, my husband and her younger sister who sleeps in her room would lie awake trembling for the rest of the night). It was a horrible way to be awakened. She began having nighttime seizures on Lamictal, too -- which goes along with some of the things I've heard on this list. She started hitting a lot and would do odd things like bang her head against things. With all this said, it was the best of the worst, in terms of side effects. But, we never had decent control on it. The only drug that ever gave us control was Topomax -- but that rendered her virtually like an infant.

She started Topomax in August of 2000. We began weaning in March 2001. We took three months to wean 150 mg./day. Our neuro had suggested one tablet a week. We went 1/2 tablet a week and sometimes more slowly. She had withdrawl seizures -- including one grand mal that required diastat -- and went through a myriad of behavioral quirks that we're still working through.

Now that she's off, she seems to be a bit clearer cognitively and her speech is better -- but we're still dealing with behavior issues. She's also having a seizure between 4 and 6 a.m. that we can't "shake" -- we're hoping it's withdrawl, but it's now been over 2 weeks. I saw that e-mailed you -- the tonic clonics that Hannah started off Lamictal took a couple months to work their way out.

Sorry to paint a rather bleak picture. . .have to say I haven't heard much good about Lamictal (heard much better about Zonagram, which would have been our next drug option). . . but, as we know so well. . .everyone's different.

You say the diet's not working. . . I'm assuming you feel you've exhausted all the fine tuning options and various supplement options (B6, digestive enzymes, lowering/raising ratio, food allergies, etc.). Most times that's not something a doctor, or even a dietician will offer. . . . but there are a lot of options. You know what's best. Best of luck.--DeEtte

-----Original Message-----From: McLauchlan Sent: Monday, July 09, 2001 2:36 PMTo: ketogenic Subject: Help--need info on LamictalThe diet is not working and the doctor has said that our next step is to try Lamictal. I know I've read many horror stories about Lamictal and it's weaning, but I didn't think they applied to me so I didn't save them. Could anyone out there who has any experiences (both good and bad) with it, please post. You can email me privately if you want, or put it on the group.Thanks a bunch._________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. "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]

As for the B6 I haven't tried it but figured it wouldn't have to be paired with the diet. Am I wrong? I plan to try it.[Person, DeEtte] B6 does not need to be administered with the diet.

I didn't think Lamictal dulled cognitive ability. For us Topamax was horrible for this.[Person, DeEtte] Personally, I think all the drugs dulled cognitively -- especially Topomax. But I'd say with Lamictal, too. It's kind of a chicken/egg thing. . . was so hyper on Lamictal that she couldn't settle down to concentrate.

-- It sounds like you're looking at this from all angles, which is good. Having a 12 year-old is a whole different ball game than having a six year-old on the diet. Even at six, I've noticed that this is the first time I really felt like she was different -- it's so obvious when they can't eat anything that anyone else can. We're not seizure free, but we're a lot better off than when pre-diet. Right now, I'm trying for best control possible while still searching for other answers. We're working with a homeopathic physician and a chiropractor doing cranio sacral work, too. There's lots of options. . .it's just so frustrating because there's no clear-cut answers as to what causes these seizures. Best of luck to you and please continue to post. We'll try to help you through no matter what your decision.--D

[Guest guest]

As for the B6 I haven't tried it but figured it wouldn't have to be paired with the diet. Am I wrong? I plan to try it.[Person, DeEtte] B6 does not need to be administered with the diet.

I didn't think Lamictal dulled cognitive ability. For us Topamax was horrible for this.[Person, DeEtte] Personally, I think all the drugs dulled cognitively -- especially Topomax. But I'd say with Lamictal, too. It's kind of a chicken/egg thing. . . was so hyper on Lamictal that she couldn't settle down to concentrate.

-- It sounds like you're looking at this from all angles, which is good. Having a 12 year-old is a whole different ball game than having a six year-old on the diet. Even at six, I've noticed that this is the first time I really felt like she was different -- it's so obvious when they can't eat anything that anyone else can. We're not seizure free, but we're a lot better off than when pre-diet. Right now, I'm trying for best control possible while still searching for other answers. We're working with a homeopathic physician and a chiropractor doing cranio sacral work, too. There's lots of options. . .it's just so frustrating because there's no clear-cut answers as to what causes these seizures. Best of luck to you and please continue to post. We'll try to help you through no matter what your decision.--D

[Guest guest]

, we weaned the lamictal as the diet was giving much better control, and I want Hannah on a little med'n as possible. We were happy at the time she started it, as there were no obvious side effects, but we did notice improvements when she came off it, more alert and happy.

-- Re: Help--need info on Lamictal

:Thanks for the response.For the two years that Hannah was on it did you observe any side effects? I assume you weaned it because she was on the diet and for no other reason, it this true?>Hannah had been taking Lamictal for more thnan 2 years when we weaned it>late last year. Hannah has about the same sz control,>is more alert, and is generally more settled than when using lamictal. >I'm >so glad she's off it, and never realised how it affected her until >it was >removed.>> ( Hannah's mum, Australia)________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com."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]

, we weaned the lamictal as the diet was giving much better control, and I want Hannah on a little med'n as possible. We were happy at the time she started it, as there were no obvious side effects, but we did notice improvements when she came off it, more alert and happy.

-- Re: Help--need info on Lamictal

:Thanks for the response.For the two years that Hannah was on it did you observe any side effects? I assume you weaned it because she was on the diet and for no other reason, it this true?>Hannah had been taking Lamictal for more thnan 2 years when we weaned it>late last year. Hannah has about the same sz control,>is more alert, and is generally more settled than when using lamictal. >I'm >so glad she's off it, and never realised how it affected her until >it was >removed.>> ( Hannah's mum, Australia)________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com."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]

ketogenic@y..., " McLauchlan " <slmclauchlan@h...> wrote:

> The diet is not working and the doctor has said that our next step

is to try

> Lamictal. I know I've read many horror stories about Lamictal and

it's

> weaning, but I didn't think they applied to me so I didn't save

them. Could

> anyone out there who has any experiences (both good and bad) with

it, please

> post. You can email me privately if you want, or put it on the

group.

>

> Thanks a bunch.

>

>

> _My son Blair had a 10 week seizure fer " honeymoon " with lamictal,

it took us forever ( 4 months) to get up to theraputic dose due to

worries of allergic reaction (the dreaded lamictal rash)then it just

stopped working. No dramatic behavor problems for us, but 3 mo after

starting the diet and then again about 6 mo later he had scary toxic

episodes and we had to drop it FAST, he got off it with no problems

or side effect nightmares. Of all the drugs we have tried, the

lamictal is the only one that had any affect on sz (which regretably

did not last) The toxic episodes were not plesant, the biggest

problem was convincing the docs it was not the flu!!!) If you try

this med please keep in touch.

Jill Blair's mom keto kid since 8/99 not sz free (yet) but doing

great!!

______________________________________________________________________

__

> Get Your Private, Free E-mail from MSN Hotmail at

http://www.hotmail.com.

[Guest guest]

Yes, we have tried some fine tuning. As for the B6 I haven't tried it but figured it wouldn't have to be paired with the diet. Am I wrong? I plan to try it.

,

Ive been trying to follow your posts...Im not sure that IVe got all the facts...IVe been at this

list a long, long time, but having been off for 6 months Ive lost track of who is who, and have

given up on trying to remember who has what kid and what their situation is...

I also have an older kid on the diet, was 11 when we started and will be turning

16 this fall...(good grief, my baby will be 16??????? :^O ) But anyhoo...I can totally

relate to the quality of life issues... is pretty easy going, and after fine tuning

and getting him totally off the drugs, he felt so good that 'he' continued to stick with

it. One of the things that has really helped...was bribery!!! he has made quite a

bit of money by getting paid for when we eat out, for milestones like 6 months, 1 year,

ect, on the diet, I also have had to be rather creative with his diet...coming up with

different things cuz the better he felt, the more he complained about the foods.

I feel that you have to at least commit to a longer term on the diet...at least long enough

to wean drugs and fine tune...usually that takes about 1 -2 years...depending

on how many drugs!!

Something I really want you to consider is nutritional intervention! the digestive

enzymes we were discussing...checking into yeast, and adding 'quality' mulit

vit and other supplements like the Bs, taurine, and EFAs! These are things

that made a HUGE difference with .

Cant help ya with your discussion on Lamictal...thats bout the only one we

didnt try!

cya

Barb....s mom 15 year old keto kid for 4+ years

[Guest guest]

Yes, we have tried some fine tuning. As for the B6 I haven't tried it but figured it wouldn't have to be paired with the diet. Am I wrong? I plan to try it.

,

Ive been trying to follow your posts...Im not sure that IVe got all the facts...IVe been at this

list a long, long time, but having been off for 6 months Ive lost track of who is who, and have

given up on trying to remember who has what kid and what their situation is...

I also have an older kid on the diet, was 11 when we started and will be turning

16 this fall...(good grief, my baby will be 16??????? :^O ) But anyhoo...I can totally

relate to the quality of life issues... is pretty easy going, and after fine tuning

and getting him totally off the drugs, he felt so good that 'he' continued to stick with

it. One of the things that has really helped...was bribery!!! he has made quite a

bit of money by getting paid for when we eat out, for milestones like 6 months, 1 year,

ect, on the diet, I also have had to be rather creative with his diet...coming up with

different things cuz the better he felt, the more he complained about the foods.

I feel that you have to at least commit to a longer term on the diet...at least long enough

to wean drugs and fine tune...usually that takes about 1 -2 years...depending

on how many drugs!!

Something I really want you to consider is nutritional intervention! the digestive

enzymes we were discussing...checking into yeast, and adding 'quality' mulit

vit and other supplements like the Bs, taurine, and EFAs! These are things

that made a HUGE difference with .

Cant help ya with your discussion on Lamictal...thats bout the only one we

didnt try!

cya

Barb....s mom 15 year old keto kid for 4+ years

[Guest guest]

Yes, we have tried some fine tuning. As for the B6 I haven't tried it but figured it wouldn't have to be paired with the diet. Am I wrong? I plan to try it.

,

Ive been trying to follow your posts...Im not sure that IVe got all the facts...IVe been at this

list a long, long time, but having been off for 6 months Ive lost track of who is who, and have

given up on trying to remember who has what kid and what their situation is...

I also have an older kid on the diet, was 11 when we started and will be turning

16 this fall...(good grief, my baby will be 16??????? :^O ) But anyhoo...I can totally

relate to the quality of life issues... is pretty easy going, and after fine tuning

and getting him totally off the drugs, he felt so good that 'he' continued to stick with

it. One of the things that has really helped...was bribery!!! he has made quite a

bit of money by getting paid for when we eat out, for milestones like 6 months, 1 year,

ect, on the diet, I also have had to be rather creative with his diet...coming up with

different things cuz the better he felt, the more he complained about the foods.

I feel that you have to at least commit to a longer term on the diet...at least long enough

to wean drugs and fine tune...usually that takes about 1 -2 years...depending

on how many drugs!!

Something I really want you to consider is nutritional intervention! the digestive

enzymes we were discussing...checking into yeast, and adding 'quality' mulit

vit and other supplements like the Bs, taurine, and EFAs! These are things

that made a HUGE difference with .

Cant help ya with your discussion on Lamictal...thats bout the only one we

didnt try!

cya

Barb....s mom 15 year old keto kid for 4+ years

[Guest guest]

Hi ,

I didn't notice much change in Gillian going on lamictal untill we started

weaning then I realize how flat she'd become. We couldn't get her to smile

or respond to us in any way. Thinking back thats when she was most

miserable. It didn't help the siezures. Some days she'd have big clusters

of siezures and cry all day. However, I remember thinking in the beginning

how nice it was that it didn't make her so drowsy as the other AED's.

Anyways, coming off has been really crappy up until we introduced large

dose of B6 daily now she's breezing through pretty well. Also I think her

ketones are climbing with each decrease.

That's our experience,

TTFN

Liz

Help--need info on Lamictal

> The diet is not working and the doctor has said that our next step is to

try

> Lamictal. I know I've read many horror stories about Lamictal and it's

> weaning, but I didn't think they applied to me so I didn't save them.

Could

> anyone out there who has any experiences (both good and bad) with it,

please

> post. You can email me privately if you want, or put it on the group.

>

> Thanks a bunch.

>

>

> _________________________________________________________________________

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

>

>

> " 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 didn't notice much change in Gillian going on lamictal untill we started

weaning then I realize how flat she'd become. We couldn't get her to smile

or respond to us in any way. Thinking back thats when she was most

miserable. It didn't help the siezures. Some days she'd have big clusters

of siezures and cry all day. However, I remember thinking in the beginning

how nice it was that it didn't make her so drowsy as the other AED's.

Anyways, coming off has been really crappy up until we introduced large

dose of B6 daily now she's breezing through pretty well. Also I think her

ketones are climbing with each decrease.

That's our experience,

TTFN

Liz

Help--need info on Lamictal

> The diet is not working and the doctor has said that our next step is to

try

> Lamictal. I know I've read many horror stories about Lamictal and it's

> weaning, but I didn't think they applied to me so I didn't save them.

Could

> anyone out there who has any experiences (both good and bad) with it,

please

> post. You can email me privately if you want, or put it on the group.

>

> Thanks a bunch.

>

>

> _________________________________________________________________________

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

>

>

> " 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

>

>

>

>