Re: re:help with archives and dilantin wean info

[Guest guest]

We reduced this one quite agressively - from what I remember, altho it was

almost 3 yrs ago and he was not on it for very long. I do remember a bit of

trouble with it but at the time Mike was not seizure free so I didnt notice a

huge increase in seizures.

For Mike, he has a distinct pattern when reducing. We would reduce, then for

about 3-5 days things would be great, better than before the reduction, then he

would have an increase in seizures for about a week or so, and then things would

climb a bit better, when they took a nose dive again, it would be time to reduce

again. I am not saying this pattern works with all kids, but I can almost set

the clock and calendar by Mike when I reduce meds

I never really went with meds levels at the end of a wean, because even if the

level is less than 1 in the blood, the body is still addicted to the medication

Would be SO nice if we could just ditch when the levels were that low -

would make life so much easier on us and our kiddies, unfortunately, as I have

found these last 3 years, life is NOT easy - ah well, ce la vie.

Jenn

re:help with archives and dilantin wean info

Hello,

Can someone tell me how to get to the archives and look up past posts on

medecine withdrawals , specifically dilantin weans. I was also wondering if

anyone out there who has had experience weaning dilantin, had extreme trouble

at

the tail end of the wean. My son is down to 90mg ( 30mg 3x day) and his level

is less than one and he is having a very difficult time with this last 15mg

drop. He has been on this drug over 3 years and it has been a rollercoaster

ride

with drug levels fluctuating unbelievably. I was wondering if I should wait

until he hopefully stabilizes or should I bite the bullet and keep weaning

every 2 weeks to get rid of this small dose and low drug level which is

doing more harm than good.

Any and all thoughts would be very much appreciated.

kim Tanner

[Guest guest]

We reduced this one quite agressively - from what I remember, altho it was

almost 3 yrs ago and he was not on it for very long. I do remember a bit of

trouble with it but at the time Mike was not seizure free so I didnt notice a

huge increase in seizures.

For Mike, he has a distinct pattern when reducing. We would reduce, then for

about 3-5 days things would be great, better than before the reduction, then he

would have an increase in seizures for about a week or so, and then things would

climb a bit better, when they took a nose dive again, it would be time to reduce

again. I am not saying this pattern works with all kids, but I can almost set

the clock and calendar by Mike when I reduce meds

I never really went with meds levels at the end of a wean, because even if the

level is less than 1 in the blood, the body is still addicted to the medication

Would be SO nice if we could just ditch when the levels were that low -

would make life so much easier on us and our kiddies, unfortunately, as I have

found these last 3 years, life is NOT easy - ah well, ce la vie.

Jenn

re:help with archives and dilantin wean info

Hello,

Can someone tell me how to get to the archives and look up past posts on

medecine withdrawals , specifically dilantin weans. I was also wondering if

anyone out there who has had experience weaning dilantin, had extreme trouble

at

the tail end of the wean. My son is down to 90mg ( 30mg 3x day) and his level

is less than one and he is having a very difficult time with this last 15mg

drop. He has been on this drug over 3 years and it has been a rollercoaster

ride

with drug levels fluctuating unbelievably. I was wondering if I should wait

until he hopefully stabilizes or should I bite the bullet and keep weaning

every 2 weeks to get rid of this small dose and low drug level which is

doing more harm than good.

Any and all thoughts would be very much appreciated.

kim Tanner

[Guest guest]

Hi Kim.

was cold turkied off dilantin in hospital, but in his case, this

med is one not recommended for his syndrome, (can actually aggravate it -

found out in hindsight, as we do...) so if anything, his seizures improved.

But like Mike, he was having so many back then I probably wouldn't have

noticed too much weaning fallout anyway

So not much help there, but re the archives, go to the ketogenic group

home page, click on messages and they will all appear listed in numerical

order.

Type in your keyword where there is the space that says 'search archives',

so yours will be phenytoin/dilantin.

If none found in the most recent lot of messages, it will bring up a

question whether you want to search the next numerical group and so on. If

still no joy after going back a fair while, you could try something less

specific like 'med weans' or something like that.

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

> Hello,

> Can someone tell me how to get to the archives and look up past posts on

> medecine withdrawals , specifically dilantin weans. I was also

wondering if

> anyone out there who has had experience weaning dilantin, had extreme

trouble at

> the tail end of the wean. My son is down to 90mg ( 30mg 3x day) and his

level

> is less than one and he is having a very difficult time with this last

15mg

> drop. He has been on this drug over 3 years and it has been a

rollercoaster ride

> with drug levels fluctuating unbelievably. I was wondering if I should

wait

> until he hopefully stabilizes or should I bite the bullet and keep

weaning

> every 2 weeks to get rid of this small dose and low drug level which

is

> doing more harm than good.

>

> Any and all thoughts would be very much appreciated.

>

> kim Tanner

[Guest guest]

Hi Kim.

was cold turkied off dilantin in hospital, but in his case, this

med is one not recommended for his syndrome, (can actually aggravate it -

found out in hindsight, as we do...) so if anything, his seizures improved.

But like Mike, he was having so many back then I probably wouldn't have

noticed too much weaning fallout anyway

So not much help there, but re the archives, go to the ketogenic group

home page, click on messages and they will all appear listed in numerical

order.

Type in your keyword where there is the space that says 'search archives',

so yours will be phenytoin/dilantin.

If none found in the most recent lot of messages, it will bring up a

question whether you want to search the next numerical group and so on. If

still no joy after going back a fair while, you could try something less

specific like 'med weans' or something like that.

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

> Hello,

> Can someone tell me how to get to the archives and look up past posts on

> medecine withdrawals , specifically dilantin weans. I was also

wondering if

> anyone out there who has had experience weaning dilantin, had extreme

trouble at

> the tail end of the wean. My son is down to 90mg ( 30mg 3x day) and his

level

> is less than one and he is having a very difficult time with this last

15mg

> drop. He has been on this drug over 3 years and it has been a

rollercoaster ride

> with drug levels fluctuating unbelievably. I was wondering if I should

wait

> until he hopefully stabilizes or should I bite the bullet and keep

weaning

> every 2 weeks to get rid of this small dose and low drug level which

is

> doing more harm than good.

>

> Any and all thoughts would be very much appreciated.

>

> kim Tanner