Re: having blood not clotting~starting depakote wean

July 16, 2004

A very quick reply, no time as always...

We have just weaned Francesca off depakote and she has been drug free

for 2 months now.

We took four and a half months to wean from 700mg per day. We took

away 100mg every two weeks, then slowed it down to 50mg every two

weeks towards the end.

Seizure wise, we were very lucky - we just had one tonic seizure

lasting about 2 minutes, and 2 shorter ones - probably just 20-30

seconds each. Her myoclonic jerks didn't change at all really during

the wean.

Behaviour wise, again not too bad, I would say she was more prone to

tantrums during the wean than before, but live-able with. However,

towards the end she got really, really emotional and would just burst

into tears over the slightest little thing and then be completely

inconsolable. This lasted for about 3-4 weeks and was really awful.

That's my experience - I know there are many others here, and all

quite different I believe.

Good luck with the wean - it will be worth it in the end...

, Mum to Francesca, Keto Kid since Sept 03 drug free since May 04

> Last week Luke scratched his ear his his fingernail. It bleed &

> bleed, I remember thinking, I know I just timmed his nails, then I

> chalked it up to his ear beign very vascular. I done a finger

stick

> on him wednesday, he bled for 3 hours! I don't mean barely oozing,

I

> mean dripping blood for 3 hours! I appied direct pressure, ice &

> elavated his hand for an hour straight....it scared me! I talked

> with the neuro & he said the depakote would cause it. Last night

I

> took away one pill! I am so excited about weaning him off the med,

> but we were supposed to wait till september to start the wean. The

> neuro wanted to fine tune the diet some more. He has had 5

> consecutive seizure free days...I am praying everthing goes

> smoothly. Any experienced depakote weaners....how long does it

> usually take for any withdrawl seizures? Any advice or comments

are

> greatly appreciated!

>

> Thanks,

>

July 17, 2004

Hi

I'm afraid I have no experience of the blood not clotting but we're going

through a

drug wean (Depakote/Epilim) right now and it's proving to be quite tough.

We were on 1100mg per day at the beginning of the diet: this had been ramped up

and up due to it not reducing the seizures. I have been convinced for ages that

the

Epilim is having no effect whatsoever but I won't bore you with why as it will

take too

long! After three months on the diet we were allowed to start reducing the dose

by no

more than 200mg every 2 weeks. From what I hear off this site that's quite fast,

and I

am very much on my guard in case things deteriorate. We have found there is a

pattern so far - we reduce the meds and about a day later the number of seizures

rises and the behaviour goes haywire. It is almost like Ben is " possessed " and

will not

respond to promises of anything, or reasoning or dire threats! We are sure we've

seen

at least one tonic during these periods, and maybe there have been two but the

second one was in the middle of the night and we didn't actually witness it. (We

never

had tonics before the diet as far as we know, just atonics (rarely), jerks and

atypical

absences) Then about three or four days after the wean he perks up again and

regains the seizure control and settles down. This time (we've just reduced to

500mg)

he became really panicky and kept saying " mum I think I'm going to have a jerk,

I

think I'm going to have a jerk " so I have had to cuddle him and feed him his

meals to

try to reassure him. We used to have a real problem with jerks at mealtimes - at

one

time it was as regular as clockwork - and we had several broken plates. As he

comes

off the drug and " wakes up " I think he is starting to tune in to his seizure

patterns

and it is worrying him. Anyway today he has woken up bright and breezy and full

of

the joys of spring (well OK, summer). Thank God for the beginning of each day.

It

always feels so much better when you've had some sleep and you make a fresh

start.

Hope things go well for you.

All the best

Rose - Mum of Ben (9) - in ketosis since March 04 and aboard the drug wean

rollercoaster...

July 17, 2004

Hi

I thought I had better delete all our messages as it would get a bit confusing

so I'm

starting again with a blank screen. Today has been a good day - 2 absences and

one

myoclonic. Ben has always been volatile but particularly so with the drug wean.

I

remember when he was tiny (long before the days of epilepsy) he could be quite a

so-

and-so (determined to put it politely) but this is something else - he's not

himself.

Also he was always good at school in the old days and now we can't guarantee

that he

will be! You may have read my post about the headmaster sending us a letter

complaining about the behaviour! Well now we have had a chat with various

members

of staff and basically begged for some understanding and things seem a bit

better.

Also I just remembered a nose-bleed Ben had recently which took absolutely ages

to

stop. It worried me a great deal at the time but I had completely forgotten it

until this

afternoon. As it did eventually stop I didn't ask the doc about it. No probs in

the last

couple of weeks though.

Good evening from this side of the pond!

Rose

July 17, 2004

I'm not an experienced Depakote weaner... my daughter's currently on

480mg a day... I just wanted to wish you the best with your wean. I hope your

son stays seizure free, and everything goes smoothly. My fingers are

crossed!!

(mom to Daphne -- Infantile Spasms dx at 3 months, now 9 months old.

Ketogenic diet started 6/22)

> Last week Luke scratched his ear his his fingernail. It bleed &

> bleed, I remember thinking, I know I just timmed his nails, then I

> chalked it up to his ear beign very vascular. I done a finger stick

> on him wednesday, he bled for 3 hours! I don't mean barely oozing, I

> mean dripping blood for 3 hours! I appied direct pressure, ice &

> elavated his hand for an hour straight....it scared me! I talked

> with the neuro & he said the depakote would cause it. Last night I

> took away one pill! I am so excited about weaning him off the med,

> but we were supposed to wait till september to start the wean. The

> neuro wanted to fine tune the diet some more. He has had 5

> consecutive seizure free days...I am praying everthing goes

> smoothly. Any experienced depakote weaners....how long does it

> usually take for any withdrawl seizures? Any advice or comments are

> greatly appreciated!

>

> Thanks,

>

July 18, 2004

Hi

Sorry you're having a rough ride too. I wish I could understand why Ben

sometimes

behaves the way he does so that I can explain things to my family, but you just

have a

gut feeling that what they're doing is out of their control, don't you, and that

explanation doesn't wash! My mum is quite understanding but the others find it

difficult. Even my husband struggles with it but then he's not around very much

so

he's not observing him continually.

I have tried throughout the epilepsy (diagnosed June 99) to solve bad behaviour

problems by various means - getting cross (a no-no - Ben just panics and hides),

promising rewards (useless if he is angry enough), star charts (no good -

couldn't

seem to look far enough into the future to want to change his behaviour at the

present moment) etc etc. In fact sometimes if you told him off he looked totally

humiliated and recently when we have discussed his behaviour together he just

keeps

saying " I am such an idiot " . I think he has a really low self-esteem too. Our

neuro-

psychologist also said something very interesting when she assessed him

recently:

that children with frequent seizures regularly experience a loss of control over

their

lives (ie when they are fitting) and that they often exhibit controlling

behaviour which

can be very frustrating for people if they don't understand what's going on. A

good

example of this is Ben might try to take an unsuitable toy with us in the car,

and I will

say " Ben can you give that to me " . He will then put the toy down somewhere

instead

of giving it to me. I know this seems like a ridiculously unimportant incident

but it's

an example of understanding you want him to do something and him wanting to be

obedient but also wanting to control the situation by making a decision himself.

This

would make some members of my family mad, because it looks as though he is

deliberately not quite doing what he is told.

Ben also gets upset at extremely little things, and this can result in him

seeming to be

quite rude to me. Some members of my family are appalled at this as we have a

tradition of bringing up our kids quite strictly. I have had to learn to reason

him

through it and try not to take it too personally!

Anway I won't go on any more or I'll end up writing our life story.

Take care

Rose

July 18, 2004

Hello Rose...

I jumped in this because I watch and read when I can. Your explanation of

control and your issues are so incredibly familiar, that I was so glad (not

in that sense) to hear that I wasn't alone. It sounds exactly like my

daughter! She's almost 6 and has " periodic spasms " and the head drops are

now making her fall to the ground. She's been on the diet for a month and

I can't seem to get her high enough to tell if it's working. She won't

take the fats of the cream and it makes it extremely difficult to

control. I now reason, beyond reasoning, to get her to where she needs to

be...160. I need to see if it works and I believe she changes after the

initial hospital visit for the better. When she came down to moderate, her

head drops were hard and stronger than ever. But, when she gets higher, I

think she seems to change and the diet works. I'm struggling daily to keep

her in keto range and the " control " she works on having is exactly the way

you explained it. My family makes me crazy when they just " don't get

it " . I explain and explained for the last almost 2 years since this has

happened that it's very difficult for her and I'm certainly not happy with

the behavior, but we are working on it the best we can. Most of the time,

she's so sweet...and then ---- at a snap of a finger, she's really upset

about absolutely nothing that would make sense to you and I.

Sooo...in all, thanks for this explanation. I really felt I was doing

something wrong. Thank you for explaining to me that I'm not a bad Mom for

not yelling when people think I should or not putting up a chart. People

think I'm not working on her behavior and letting it just go. I really

don't, but it's very hard to differentiate what are the meds, behavior or

just plain confusion to her. How do you get angry for something they

really can't help sometimes? It's definitely tough.

Have a wonderful night and thank you again......

, Sheridan's Mom

At 02:57 AM 7/18/2004, you wrote:

>Hi

>

>Sorry you're having a rough ride too. I wish I could understand why Ben

>sometimes

>behaves the way he does so that I can explain things to my family, but you

>just have a

>gut feeling that what they're doing is out of their control, don't you,

>and that

>explanation doesn't wash! My mum is quite understanding but the others

>find it

>difficult. Even my husband struggles with it but then he's not around very

>much so

>he's not observing him continually.

>

>I have tried throughout the epilepsy (diagnosed June 99) to solve bad

>behaviour

>problems by various means - getting cross (a no-no - Ben just panics and

>hides),

>promising rewards (useless if he is angry enough), star charts (no good -

>couldn't

>seem to look far enough into the future to want to change his behaviour at

>the

>present moment) etc etc. In fact sometimes if you told him off he looked

>totally

>humiliated and recently when we have discussed his behaviour together he

>just keeps

>saying " I am such an idiot " . I think he has a really low self-esteem too.

>Our neuro-

>psychologist also said something very interesting when she assessed him

>recently:

>that children with frequent seizures regularly experience a loss of

>control over their

>lives (ie when they are fitting) and that they often exhibit controlling

>behaviour which

>can be very frustrating for people if they don't understand what's going

>on. A good

>example of this is Ben might try to take an unsuitable toy with us in the

>car, and I will

>say " Ben can you give that to me " . He will then put the toy down somewhere

>instead

>of giving it to me. I know this seems like a ridiculously unimportant

>incident but it's

>an example of understanding you want him to do something and him wanting

>to be

>obedient but also wanting to control the situation by making a decision

>himself. This

>would make some members of my family mad, because it looks as though he is

>deliberately not quite doing what he is told.

>Ben also gets upset at extremely little things, and this can result in him

>seeming to be

>quite rude to me. Some members of my family are appalled at this as we have a

>tradition of bringing up our kids quite strictly. I have had to learn to

>reason him

>through it and try not to take it too personally!

>

>Anway I won't go on any more or I'll end up writing our life story.

>

>Take care

>Rose

>

> " 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

>

July 18, 2004