need help

[Guest guest]

Hi

I felt the need to reply to your letter. This is NOT meant to be negative,

or put any influences on you. Just wanted to share that my Jessy didn't

stay on the diet for more than 8 months. Things just never came quite

right, not necessarily with the seizure control, but just with all kinds of

upsets and crying, and me never knowing what was going on.

This whole story with ketones, and meds, and trying to constantly know

EXACTLY what the problem is at any time, is VERY complicated. Very very

complicated. What I CAN say, is you're doing okay. We have to know that

we, for some reason, have been given our special needs children to take care

of, and we are doing the very best that we can.

The knowledge of all the drugs, their actions, their side effects, their

combined effects, the ketones, THEIR combined effects with the drugs, are

not even known to the DOCTORS, let alone us.

Personally, our Jessy was just not happy on the diet. In OUR case, we found

that the ketones were just too high, no matter what we did. Acidosis is

FARRRRRRRRR more serious than anyone seems to give it credit for. I was

always told, " Don't worry, you'll know - there are symptoms, " etc etc. The

problem was, Jessy being as she is, often showed these sorts of behavioural

patterns ANYWAY. Lethargy, crying, vomiting bits, etc. How could I EVER

know if they were symptoms of too high ketosis, or other things ? Run to

hospitals every day for bloods ?

Turned out she was just too ketotic ALL the time, whether we reduced drugs,

reduced ratio's, whatever. In fact, in taking her off the diet, it took her

almost TWO WEEKS to come OUT of ketosis.

It's a very personal thing, I believe, and each child is an individual and

reacts differently to anything. The best advice I can give is to follow

your heart, your gut feel.

From the start of the diet Jessy just cried all day, and constantly said,

" mo more, mo more " (no more). I stopped listening to doctors, and other

people. I finally decided to listen to JESSY. And I took her off the

diet.

I know we are now once again at increased risk of bad seizures. But day to

day, Jessy is happy and laughing again.

Just wanted to share my story.

Love Janice and Jessy (cp, optic atrophy, and seizure disorder)

need help

> Hi everyone,

>

> Ally's been on the diet since 4/01. Not seizure free, but

> improved. Only has seizures in sleep. Decided to wean

> phenobarb starting 11/28/01 (I didn't think it was helping

> her for various reasons). We reduced from 60 to 45mg (she

> only takes it at night) w/o a problem. After 2 weeks,

> reduced again to 30mg. Within 2 days she was drooling.

> Increasingly slower speech and difficulty with balance.

> Then on Saturday (5 days after decrease) she had a tonic

> clonic seizure at 7pm. Hubby and I decided we weren't ready

> to ride this out yet, so we icreased her back to 45mg. The

> next 2 nights she again seized aroung 7pm. Increased her

> back to 60mg.

> Also gave 0.5mg clonazepam last night (the 3rd night of

> tonic clonic in PM). She still acts drugged today, I

> thought the clonazepam would have been worn off by now.

> During the day, she acts " post ictal " or " subclinical " =

> drowsy, slowed speech, ataxic, drooling. Do you think this

> is still from the decrease to 30 mg?

> Nothing else has changed, except we changed her to stevia

> sweetened tea(no additives) from diet pop about a month ago

> (before the weaning). Should we continue to hold off, give

> her more time, or should we give her more meds? The neuro

> wanted us to add Keppra before weaning, which I didn't. I

> can add it now, but it takes a while to work (he said about

> a month to get to the right levels). She is also on

> Topamax. Her ketones remain large.

> Your comments, support, and ideas would be much

> appreciated!

> Thank you

>

>

> __________________________________________________

>

[Guest guest]

Sue, when I am feeling very depressed (about

vulvodynia, most of the time), I force myself to keep

busy. Keeping my mind occupied helps me a lot. So

does meditation. A good cry *can* be cleansing, as

long as it doesn't go on and on, if you know what I

mean. However, if you are feeling seriously depressed

(and it sounds like you do feel that way), don't be

afraid to ask your doctor for some meds to help you

out. I don't know if you are currently on any meds or

not, but they do have their role to play. We all need

some help some times!

Please keep in touch. I find that keeping in touch

with this group helps me over some of the bad times.

Take care.

Suzy

--- suebee wrote:

> Since my mom passed away and especially over the

> holiday season I have been

> really depressed, so much so that's it's affecting

> how much I do. If I

> didn't have children I think I would be in bed a lot

> more. I also find

> myself eating a lot and when I look at the scale

> that just depresses me

> further. I know this isn't exactly VV related but

> if someone has had a

> similar experience and can help I would appreciate

> it. Thanks, Sue

>

>

__________________________________________________

[Guest guest]

Hi everyone,

Ally's been on the diet since 4/01. Not seizure free, but

improved. Only has seizures in sleep. Decided to wean

phenobarb starting 11/28/01 (I didn't think it was helping

her for various reasons). We reduced from 60 to 45mg (she

only takes it at night) w/o a problem. After 2 weeks,

reduced again to 30mg. Within 2 days she was drooling.

Increasingly slower speech and difficulty with balance.

Then on Saturday (5 days after decrease) she had a tonic

clonic seizure at 7pm. Hubby and I decided we weren't ready

to ride this out yet, so we icreased her back to 45mg. The

next 2 nights she again seized aroung 7pm. Increased her

back to 60mg.

Also gave 0.5mg clonazepam last night (the 3rd night of

tonic clonic in PM). She still acts drugged today, I

thought the clonazepam would have been worn off by now.

During the day, she acts " post ictal " or " subclinical " =

drowsy, slowed speech, ataxic, drooling. Do you think this

is still from the decrease to 30 mg?

Nothing else has changed, except we changed her to stevia

sweetened tea(no additives) from diet pop about a month ago

(before the weaning). Should we continue to hold off, give

her more time, or should we give her more meds? The neuro

wanted us to add Keppra before weaning, which I didn't. I

can add it now, but it takes a while to work (he said about

a month to get to the right levels). She is also on

Topamax. Her ketones remain large.

Your comments, support, and ideas would be much

appreciated!

Thank you

__________________________________________________

[Guest guest]

,

When we weaned our daughter off the Pheno we at first tried taking 5ml every

week and we ran into a rash of seizures about two or three days later. We

also noticed that she was more irritable and did not sleep well. We then

decided to withdraw 1ml every four days and we did not have any seizures.

Also, 's mood was improved weaning slower. I seem to remember that

from earlier posts that Topamax and the KD do not mix well. I could be

wrong about the Topamax.

Dan, father to 3 1/2, keto kid since 8/01, med free, seizure free

three weeks

need help

Hi everyone,

Ally's been on the diet since 4/01. Not seizure free, but

improved. Only has seizures in sleep. Decided to wean

phenobarb starting 11/28/01 (I didn't think it was helping

her for various reasons). We reduced from 60 to 45mg (she

only takes it at night) w/o a problem. After 2 weeks,

reduced again to 30mg. Within 2 days she was drooling.

Increasingly slower speech and difficulty with balance.

Then on Saturday (5 days after decrease) she had a tonic

clonic seizure at 7pm. Hubby and I decided we weren't ready

to ride this out yet, so we icreased her back to 45mg. The

next 2 nights she again seized aroung 7pm. Increased her

back to 60mg.

Also gave 0.5mg clonazepam last night (the 3rd night of

tonic clonic in PM). She still acts drugged today, I

thought the clonazepam would have been worn off by now.

During the day, she acts " post ictal " or " subclinical " =

drowsy, slowed speech, ataxic, drooling. Do you think this

is still from the decrease to 30 mg?

Nothing else has changed, except we changed her to stevia

sweetened tea(no additives) from diet pop about a month ago

(before the weaning). Should we continue to hold off, give

her more time, or should we give her more meds? The neuro

wanted us to add Keppra before weaning, which I didn't. I

can add it now, but it takes a while to work (he said about

a month to get to the right levels). She is also on

Topamax. Her ketones remain large.

Your comments, support, and ideas would be much

appreciated!

Thank you

__________________________________________________

[Guest guest]

I would seriously, seriously consider sticking with

weaning the pheno... it's known to become stronger in

children on the diet and it did with my son. I would

change back to whatever you were doing with the diet

pop - and not change anything diet wise so you're only

dealing with the one variable of weaning pheno. If

you do one thing one week, another thing the next

week, and then something happens you really don't know

what the cause is.. and drugs can take a couple of

weeks to cause a reaction.

It's hard, I know, but my son acted drugged -- slept a

lot, fell asleep at school, would stare and not talk

-- for about 2 weeks after his final wean from pheno.

It made me realize just how powerful that drug really

was.

Just my experience, but I would think 60mg pheno is

too much with the diet. IF the seizures are gone

except for night, it may be all you need to do is add

a night time snack so that the diet keeps working

overnight.. I've heard of other people on this list

make adjustments for that reason.

Hope things get better!

Sheri - mom to Tyler, 9 and Sara, 6

--- cindy atler wrote:

> Hi everyone,

>

> Ally's been on the diet since 4/01. Not seizure

> free, but

> improved. Only has seizures in sleep. Decided to

> wean

> phenobarb starting 11/28/01 (I didn't think it was

> helping

> her for various reasons). We reduced from 60 to 45mg

> (she

> only takes it at night) w/o a problem. After 2

> weeks,

> reduced again to 30mg. Within 2 days she was

> drooling.

> Increasingly slower speech and difficulty with

> balance.

> Then on Saturday (5 days after decrease) she had a

> tonic

> clonic seizure at 7pm. Hubby and I decided we

> weren't ready

> to ride this out yet, so we icreased her back to

> 45mg. The

> next 2 nights she again seized aroung 7pm. Increased

> her

> back to 60mg.

> Also gave 0.5mg clonazepam last night (the 3rd

> night of

> tonic clonic in PM). She still acts drugged today, I

> thought the clonazepam would have been worn off by

> now.

> During the day, she acts " post ictal " or

> " subclinical " =

> drowsy, slowed speech, ataxic, drooling. Do you

> think this

> is still from the decrease to 30 mg?

> Nothing else has changed, except we changed her to

> stevia

> sweetened tea(no additives) from diet pop about a

> month ago

> (before the weaning). Should we continue to hold

> off, give

> her more time, or should we give her more meds? The

> neuro

> wanted us to add Keppra before weaning, which I

> didn't. I

> can add it now, but it takes a while to work (he

> said about

> a month to get to the right levels). She is also on

> Topamax. Her ketones remain large.

> Your comments, support, and ideas would be much

> appreciated!

> Thank you

>

>

> __________________________________________________

>

[Guest guest]

Weaning is SO HARD. . . I don't blame you for deciding

not to try right now -- but I'd suggest pressing

forward as soon as you're ready, maybe after the

holidays. If your goal is to get her off meds, you

might as well try sooner, rather than later. My

theory with the diet and drugs is that the higher fat

slows the metabolism, so you see reactions later than

you would typically think you would. Good luck!--D

__________________________________________________

[Guest guest]

How long has she been on the phenobarb? My son had lots of problems

when we tried to wean too fast. (Almost ended up back in hospital)

We tried a wean of 15mg decreased every two weeks (far far too fast for

my son and he has only been on this med since May '01)

I was told (not by the neuro but by someone who is familiar with phenobarb

weans - not to say that the neuro isnt I do love my son's neuro but there

are just going to be something things I will have to deal with on my own)

Anyway I was told by this person that for my son we should try a wean of

7mg (1/2 a 15mg tab) every month. If there is a problem, increase

the dose you just took away and wait til the body stablizes. I hate

increases because every increase means at some point a decrease and I hate

decreases even more. I was told once that there was a child on phenobarb

and a full year after a full wean the phenobarb was still sitting at theraputic

levels in this child's blood. I guess this stuff is pretty

powerful!

We are working on a dilantin wean on my son - I have halted it over

the holidays but will continue it after christmas and I have noticed that

things are pretty much fine until about the 3rd week when I think his body

is dumping what is left into his system and I have been noticing more seizures

lately. I am sure they will calm down (we had one tonic-clonic a

day for about a week while working on this wean but they stopped on their

own) One good thing for my son is that his dilantin level was only

7 (not theraputic) before we started the wean so I dont think it was doing

much good to him anyway. After we get thru this wean we are going

to work on the phenobarb again. I hope to have him off both of these

before he starts school next september. He is also on clonazapam

but we will have to live with that one for a while I think.

Good luck.

Jenn

cindy atler wrote:

Hi everyone,

Ally's been on the diet since 4/01. Not seizure free, but

improved. Only has seizures in sleep. Decided to wean

phenobarb starting 11/28/01 (I didn't think it was helping

her for various reasons). We reduced from 60 to 45mg (she

only takes it at night) w/o a problem. After 2 weeks,

reduced again to 30mg. Within 2 days she was drooling.

Increasingly slower speech and difficulty with balance.

Then on Saturday (5 days after decrease) she had a tonic

clonic seizure at 7pm. Hubby and I decided we weren't ready

to ride this out yet, so we icreased her back to 45mg. The

next 2 nights she again seized aroung 7pm. Increased her

back to 60mg.

Also gave 0.5mg clonazepam last night (the 3rd night of

tonic clonic in PM). She still acts drugged today, I

thought the clonazepam would have been worn off by now.

During the day, she acts "post ictal" or "subclinical"=

drowsy, slowed speech, ataxic, drooling. Do you think this

is still from the decrease to 30 mg?

Nothing else has changed, except we changed her to stevia

sweetened tea(no additives) from diet pop about a month ago

(before the weaning). Should we continue to hold off, give

her more time, or should we give her more meds? The neuro

wanted us to add Keppra before weaning, which I didn't. I

can add it now, but it takes a while to work (he said about

a month to get to the right levels). She is also on

Topamax. Her ketones remain large.

Your comments, support, and ideas would be much

appreciated!

Thank you

__________________________________________________

[Guest guest]

Dear Sheri, Jenn, DeEtte,Dan, etc...

Thanks for your replies!

Everything makes sense about slower metabolism, etc and I

do plan to wean eventually... I just think we are not ready

for it mentally (to see her this way again reminds us of

the hospital stay in April=drug coma/status). I was

thinking after things stabilize we may try the topomax wean

first. Since is is not as compatible with the diet and she

is on a high dose.

Sheri, she actually started at 90mg of pheno when released

from the above mentioned hospital stay. She has had her

blood levels checked and the last 2 (at 60 and 45 mg doses)

were around 14 (low therapeutic) so I doubt the pheno is

making her toxic right now. When i go this route again, i

will definitely be looking to you for support! I will also

go slower (which I thought I was!)

BTW, I changed to stevia 3 weeks before this wean, is that

enough time?

Thank you for your input, it really make me feel better.

ps congrats DeEtte on your pregnancy!

__________________________________________________