Re: gotta update on the seizures

August 2, 2006

, getting off of the seizure meds is the greatest thing to

happen - for both parent and child. This is simply SUPER. I'll wait

for your post where you tell us that you don't need them anymore :-

). Truly awesome, I am very happy for you.

I was wondering what everybody thought about adding Lysine to the

mix whilst on Valtrex. Will it take the edge off the nasty rash and

bad side effects?

Gayatri

>

> my dd used to be on lamaictal four-25mg pills a day for 50mg twice

a

> day AND clonazepam 0.125( lower dose than prescribed) twice a day

as

> well

> annie has been on valtrex a month or so but we had to stop in the

> middle for an unrelated problem . i know, i didnt want to stop it

> but really did have to and now right back on it.

> after this little stoppage of 4 days, when we restarted something

> happened. we got every symptom listed and now the rash has moved

> from chest to tummy. increased stimming, sleep disturbances, yeast

> flair, constipation, even grey circles under eyes the first week.

>

> now- back on week 2 again, annie showed empathy......WOW. also

> snuggled with me 2x in 2 days.WOW. playing more with toys,is

putting

> cause and effect together and ...

> drum roll... we have reduced the meds. she is off clonazepam and

> down to one 25mg lamictal in the am only( still needs that or will

> seize) with no breakthru seizures!!!

> i cant wait to hit day 21-30ish again and see what happens.

> we have had to stop the valtrex 3x since january for very

different

> reasons- a large bleeding ulcer( obviously not from valtrex) etc

in

> which all the docs said no meds until something heals. so it has

> been frustrating to have to start and stop. my ped agrees no more

> stoppages.

> interesting that the third time on restarting we finally had the

> flurry of symptoms and some real noticable improvements. could be

> related to other pieces of the pie. supplementation, other gut

> problems blocking effects, or could be she needed to start and

stop

> to confuse those little viral critters( our theory).. we will

see...

> teresa

>

August 2, 2006

, getting off of the seizure meds is the greatest thing to

happen - for both parent and child. This is simply SUPER. I'll wait

for your post where you tell us that you don't need them anymore :-

). Truly awesome, I am very happy for you.

I was wondering what everybody thought about adding Lysine to the

mix whilst on Valtrex. Will it take the edge off the nasty rash and

bad side effects?

Gayatri

>

> my dd used to be on lamaictal four-25mg pills a day for 50mg twice

a

> day AND clonazepam 0.125( lower dose than prescribed) twice a day

as

> well

> annie has been on valtrex a month or so but we had to stop in the

> middle for an unrelated problem . i know, i didnt want to stop it

> but really did have to and now right back on it.

> after this little stoppage of 4 days, when we restarted something

> happened. we got every symptom listed and now the rash has moved

> from chest to tummy. increased stimming, sleep disturbances, yeast

> flair, constipation, even grey circles under eyes the first week.

>

> now- back on week 2 again, annie showed empathy......WOW. also

> snuggled with me 2x in 2 days.WOW. playing more with toys,is

putting

> cause and effect together and ...

> drum roll... we have reduced the meds. she is off clonazepam and

> down to one 25mg lamictal in the am only( still needs that or will

> seize) with no breakthru seizures!!!

> i cant wait to hit day 21-30ish again and see what happens.

> we have had to stop the valtrex 3x since january for very

different

> reasons- a large bleeding ulcer( obviously not from valtrex) etc

in

> which all the docs said no meds until something heals. so it has

> been frustrating to have to start and stop. my ped agrees no more

> stoppages.

> interesting that the third time on restarting we finally had the

> flurry of symptoms and some real noticable improvements. could be

> related to other pieces of the pie. supplementation, other gut

> problems blocking effects, or could be she needed to start and

stop

> to confuse those little viral critters( our theory).. we will

see...

> teresa

>

August 3, 2006

Lysine is one of those double edged swords. It works for some, not for others.

You could

try it, but I don't believe it will help the regressive-healing but it may have

some overall

benefit.

- Stan

> >

> > my dd used to be on lamaictal four-25mg pills a day for 50mg twice

> a

> > day AND clonazepam 0.125( lower dose than prescribed) twice a day

> as

> > well

> > annie has been on valtrex a month or so but we had to stop in the

> > middle for an unrelated problem . i know, i didnt want to stop it

> > but really did have to and now right back on it.

> > after this little stoppage of 4 days, when we restarted something

> > happened. we got every symptom listed and now the rash has moved

> > from chest to tummy. increased stimming, sleep disturbances, yeast

> > flair, constipation, even grey circles under eyes the first week.

> >

> > now- back on week 2 again, annie showed empathy......WOW. also

> > snuggled with me 2x in 2 days.WOW. playing more with toys,is

> putting

> > cause and effect together and ...

> > drum roll... we have reduced the meds. she is off clonazepam and

> > down to one 25mg lamictal in the am only( still needs that or will

> > seize) with no breakthru seizures!!!

> > i cant wait to hit day 21-30ish again and see what happens.

> > we have had to stop the valtrex 3x since january for very

> different

> > reasons- a large bleeding ulcer( obviously not from valtrex) etc

> in

> > which all the docs said no meds until something heals. so it has

> > been frustrating to have to start and stop. my ped agrees no more

> > stoppages.

> > interesting that the third time on restarting we finally had the

> > flurry of symptoms and some real noticable improvements. could be

> > related to other pieces of the pie. supplementation, other gut

> > problems blocking effects, or could be she needed to start and

> stop

> > to confuse those little viral critters( our theory).. we will

> see...

> > teresa

> >

>

August 3, 2006

Lysine is one of those double edged swords. It works for some, not for others.

You could

try it, but I don't believe it will help the regressive-healing but it may have

some overall

benefit.

- Stan

> >

> > my dd used to be on lamaictal four-25mg pills a day for 50mg twice

> a

> > day AND clonazepam 0.125( lower dose than prescribed) twice a day

> as

> > well

> > annie has been on valtrex a month or so but we had to stop in the

> > middle for an unrelated problem . i know, i didnt want to stop it

> > but really did have to and now right back on it.

> > after this little stoppage of 4 days, when we restarted something

> > happened. we got every symptom listed and now the rash has moved

> > from chest to tummy. increased stimming, sleep disturbances, yeast

> > flair, constipation, even grey circles under eyes the first week.

> >

> > now- back on week 2 again, annie showed empathy......WOW. also

> > snuggled with me 2x in 2 days.WOW. playing more with toys,is

> putting

> > cause and effect together and ...

> > drum roll... we have reduced the meds. she is off clonazepam and

> > down to one 25mg lamictal in the am only( still needs that or will

> > seize) with no breakthru seizures!!!

> > i cant wait to hit day 21-30ish again and see what happens.

> > we have had to stop the valtrex 3x since january for very

> different

> > reasons- a large bleeding ulcer( obviously not from valtrex) etc

> in

> > which all the docs said no meds until something heals. so it has

> > been frustrating to have to start and stop. my ped agrees no more

> > stoppages.

> > interesting that the third time on restarting we finally had the

> > flurry of symptoms and some real noticable improvements. could be

> > related to other pieces of the pie. supplementation, other gut

> > problems blocking effects, or could be she needed to start and

> stop

> > to confuse those little viral critters( our theory).. we will

> see...

> > teresa

> >

>

August 3, 2006

This is a very intersting post . We have had several families report

success after

multiple tries on Valtrex. It's interesting. What changed since the last two

times?

- Stan

>

> my dd used to be on lamaictal four-25mg pills a day for 50mg twice a

> day AND clonazepam 0.125( lower dose than prescribed) twice a day as

> well

> annie has been on valtrex a month or so but we had to stop in the

> middle for an unrelated problem . i know, i didnt want to stop it

> but really did have to and now right back on it.

> after this little stoppage of 4 days, when we restarted something

> happened. we got every symptom listed and now the rash has moved

> from chest to tummy. increased stimming, sleep disturbances, yeast

> flair, constipation, even grey circles under eyes the first week.

>

> now- back on week 2 again, annie showed empathy......WOW. also

> snuggled with me 2x in 2 days.WOW. playing more with toys,is putting

> cause and effect together and ...

> drum roll... we have reduced the meds. she is off clonazepam and

> down to one 25mg lamictal in the am only( still needs that or will

> seize) with no breakthru seizures!!!

> i cant wait to hit day 21-30ish again and see what happens.

> we have had to stop the valtrex 3x since january for very different

> reasons- a large bleeding ulcer( obviously not from valtrex) etc in

> which all the docs said no meds until something heals. so it has

> been frustrating to have to start and stop. my ped agrees no more

> stoppages.

> interesting that the third time on restarting we finally had the

> flurry of symptoms and some real noticable improvements. could be

> related to other pieces of the pie. supplementation, other gut

> problems blocking effects, or could be she needed to start and stop

> to confuse those little viral critters( our theory).. we will see...

> teresa

>

August 3, 2006

This is a very intersting post . We have had several families report

success after

multiple tries on Valtrex. It's interesting. What changed since the last two

times?

- Stan

>

> my dd used to be on lamaictal four-25mg pills a day for 50mg twice a

> day AND clonazepam 0.125( lower dose than prescribed) twice a day as

> well

> annie has been on valtrex a month or so but we had to stop in the

> middle for an unrelated problem . i know, i didnt want to stop it

> but really did have to and now right back on it.

> after this little stoppage of 4 days, when we restarted something

> happened. we got every symptom listed and now the rash has moved

> from chest to tummy. increased stimming, sleep disturbances, yeast

> flair, constipation, even grey circles under eyes the first week.

>

> now- back on week 2 again, annie showed empathy......WOW. also

> snuggled with me 2x in 2 days.WOW. playing more with toys,is putting

> cause and effect together and ...

> drum roll... we have reduced the meds. she is off clonazepam and

> down to one 25mg lamictal in the am only( still needs that or will

> seize) with no breakthru seizures!!!

> i cant wait to hit day 21-30ish again and see what happens.

> we have had to stop the valtrex 3x since january for very different

> reasons- a large bleeding ulcer( obviously not from valtrex) etc in

> which all the docs said no meds until something heals. so it has

> been frustrating to have to start and stop. my ped agrees no more

> stoppages.

> interesting that the third time on restarting we finally had the

> flurry of symptoms and some real noticable improvements. could be

> related to other pieces of the pie. supplementation, other gut

> problems blocking effects, or could be she needed to start and stop

> to confuse those little viral critters( our theory).. we will see...

> teresa

>

August 4, 2006

-what changed since the last few times? annies duodenal ulcer is

healed and she is 6 months truly absolutely gluten free. i am sure

that matters. the last trial/stoppage was just 6 weeks ago so she

had been truly gf 5 months then.

here is my own theory- those little viral critters got worn down by

the valtrex used previously then finally it could get to them

better. i know, not at all scientific but it is interesting to read

posts where valtrex is stopped then with a restart the rash and

symptoms and gains come again. almost like the first course or two

weakened the viral hold?? nothing else has been added stopped or

changed. we have not been able to reduce the meds for more than one

day in the past 4 yearsuntil this valtrex round so i guess it is

annies turn to finally respond to something.. hooray.. teresa-- In

mb12 valtrex , " Stan Kurtz " <stankurtz@...> wrote:

>

> This is a very intersting post . We have had several

families report success after

> multiple tries on Valtrex. It's interesting. What changed since

the last two times?

>

> - Stan

>

> >

> > my dd used to be on lamaictal four-25mg pills a day for 50mg

twice a

> > day AND clonazepam 0.125( lower dose than prescribed) twice a

day as

> > well

> > annie has been on valtrex a month or so but we had to stop in

the

> > middle for an unrelated problem . i know, i didnt want to stop

it

> > but really did have to and now right back on it.

> > after this little stoppage of 4 days, when we restarted

something

> > happened. we got every symptom listed and now the rash has moved

> > from chest to tummy. increased stimming, sleep disturbances,

yeast

> > flair, constipation, even grey circles under eyes the first week.

> >

> > now- back on week 2 again, annie showed empathy......WOW. also

> > snuggled with me 2x in 2 days.WOW. playing more with toys,is

putting

> > cause and effect together and ...

> > drum roll... we have reduced the meds. she is off clonazepam

and

> > down to one 25mg lamictal in the am only( still needs that or

will

> > seize) with no breakthru seizures!!!

> > i cant wait to hit day 21-30ish again and see what happens.

> > we have had to stop the valtrex 3x since january for very

different

> > reasons- a large bleeding ulcer( obviously not from valtrex) etc

in

> > which all the docs said no meds until something heals. so it has

> > been frustrating to have to start and stop. my ped agrees no

more

> > stoppages.

> > interesting that the third time on restarting we finally had the

> > flurry of symptoms and some real noticable improvements. could

be

> > related to other pieces of the pie. supplementation, other gut

> > problems blocking effects, or could be she needed to start and

stop

> > to confuse those little viral critters( our theory).. we will

see...

> > teresa

> >

>

August 4, 2006