RE: and -Jill and all

December 2, 2003

,

My heart just goes out to you. Just remember that kids are so resilient

............it is amazing. I have seen Jake when he has had bouts of 3 hour

non stop status and was beginning to have breathing difficulties etc etc and

thought we were going to lose him. Then when he woke up out of the drug

induced coma I thought will be this be my Jake and each time he just bounces

back. This of course if a far more critical situation but will

surprise you. Keep thinking positively. Remember it is proven that people

can hear even when in a coma and somewhere in that subconscious he can hear

you. Keep telling him that everything is going to be OK and that once he is

better you are going to take him back home. He will pull through, you have

to believe that. Keep doing what you are doing .................. he is so

lucky to have such a knowledgeable and dedicated mum. Give him a big hug

from us. Thank you so much for taking the time to update us. I am sorry I

don't have any answers for you, just keep fighting the fight. Stay strong

and take care of yourself too.

Regards,

Re: and -Jill and all

Home for a while Jill, haven't really been here as we have been in PICU

most

of the time.

now very critical, so unfortunately I have no good news to pass on

at

all. Home briefly so I will fill you all in, but bear with me -

complicated

as usual....

He took a long time to come out of the thiopental coma, and when he did,

his

EEG showed multifocal spikes, which is not 's 'usual' Doose EEG. The

ACTH course may have worked to clear his Doose ones again, which hadn't

been

too bad before all this hit the fan anyway. The tonic status that the coma

inducement was for, never came back, so we assume by removing the benzos

we

did remove the cause of those ones.

As the spikes after the coma were not his usual ones, we agreed to retry

with some depakote, (loading dose IV) and we don't know whether it was

this

or not, but the next day's EEG had improved a fair bit, so kept depakote

on

board just in case it was. He was still pretty unresponsive though and on

his birthday (Sat) he had a perfectly NORMAL EEG. No spikes, no

epileptiform

activity, background well developed, etc. Ketones virtually non existent,

(had been for days) so wasn't from that. He started to open his eyes and

follow with them a bit, showed response to pain (crying when changing

plasters etc) and squeezed 's hand on command a couple of times.

But the EEG result from Sun morn showed background had developed diffuse

slowing, even though there was still no seizure activity present. Then Sun

afternoon he started showing seizure activity and also 'abnormal' body

movements that were not seizures.

BHB took a huge leap from Sat night to Sun night, by 6 pm Sun it was 6.2.

Obviously this was not from caloric intake (had been reduced to allow for

comatose state), so our fear is he burnt a lot of body fat to reach this

highly ketotic state, and with it released meds stored from fatty tissues

(both benzos and thiopental) and in conjunction with high bhb, and by then

theraputic level of depakote, it tipped him back into 'whatever' caused

all

this to start in the first place. Drs are not convinced there is a tie in

with this latest crisis, but agreed we had to drop ketones quickly, which

we

have done - keeping them below a BHB of 2.0.

I don't know the answer, it may be the cold turky diaz withdrawal has

given

the multi focal spikes, that may have resolved in time without any drug

intervention, and by intorducing medication it may now be a toxicity issue

again, it may that any state he was in up on the ward before the coma has

now changed his brain activity, but if that were the case, it doesn't

explain his normal EEG in between. It may be something underlying that we

will never know the answer to.

Because the EEG deteriorated over the last few days (changing focuses in

the

brain - not a good prognostic sign) and clinical seizures escalated, more

meds were of course loaded up (we had no choice - the convulsive

componenet

means leaving him places too much strain on his heart). Last night he had

phenytoin loads on top of an increased depakote dose, the convulsive

componenet dulled a bit, but possibly only because the muscles were that

sedated they are not moving as much. Our only hope is that as these are

not

his 'usual' seizures, that meds that would usually aggravate his condition

could work on these new ones, but I am not that hopeful. If it is a

toxicity

issue again, he is too deeply into the meds and seizure cycle to come out

of

it without intervention like induced coma again, and everyone is loath to

do

this because of the pneumonia he contracted during the first one.

Benzos, which of course would have usually been tried by now, may trigger

a

tonic crisis again, and no one wants to take this risk, but I have to say

I

am coming close to even resorting to that.

He has remained unresponsive since Sat morn, and is showing signs of

neurolgical dysfunction, possibly from the seizures not allowing usual

functioning, but possibly from brain damage. Repeat MRI today, may or may

not show damage, (doesn't alway show specific changes even when damage has

occurred) his one 2 weeks ago was normal. Spinal tap done last night in

case

he developed something secondary whilst in the coma (brain

infection/abcess

or something) to bring all this on, but the Drs say the appearance of the

spinal fluid (clear etc) and the intial testing looked like this was not

the

cause. Sent away for cultures, may take 5-7 days for a result.

My feelings? That this is med/diet related, but unable to find a way out

of

it. He is an 'unknown' for Drs, they have not seen this situation before,

and accordingly they can only try what do they 'know'.

His survival chances are not that promising at this point, but even if we

are able to stop these seizures, it is doubtful he will come out of this

as

the '' that we know. Still a chance, as neuro says, as has

faced some pretty precarious situations before and bounced back, but he

his

brain and body are very tired, and I believe his usual strength and

ability

to fight is waning.

Fairly devastated as you can imagine, a bit numb to be honest, hard to

believe that a few short weeks ago he was the best we had seen him for

ages,

both cognitively and seizure wise.

Heading back in now to join , will update when I can,

PS - his repeat carntine level taken the day he was admitted after 2 weeks

of 'theraputic' dose showed total carn level as 122 (!!) before it was

ditched - so it had skyrocketed as we had presumed. Free level was high as

well, acyl ratio was v high, but can't remember actual figure.

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

> Hi

> Has anyone heard from lately? I am wondering how is going.

I

> think it's about a week since posted to the list so I'm a

> bit concerned.

>

> If you read this , I hope that things are improving for .

> Take care and big hugs to you all.

> Jill &

>

December 2, 2003

((((((((((((())))))))))))))

Have nothing to say that can help but just know that we are all praying

over here

& Hill wrote:

>

> Home for a while Jill, haven't really been here as we have been in

> PICU most

> of the time.

> now very critical, so unfortunately I have no good news to pass

> on at

> all. Home briefly so I will fill you all in, but bear with me -

> complicated

> as usual....

December 2, 2003

,

I just wanted you and your husband to know how hard I am praying for

you and . We are all thinking, hoping and praying for you...

>

> Home for a while Jill, haven't really been here as we have been in

PICU most

> of the time.

> now very critical...

December 2, 2003

susan -- so terribly sorry to hear the recent news about daniel. i can only

imagine how devastated and terrified you both must feel. across the

atlantic, we're are praying and hoping for daniels recovery. with love,

jane

l Message-----

From:

sentto-467350-29012-1070396203-janepraeger=compuserve.com@...

oo.com

[mailto:sentto-467350-29012-1070396203-janepraeger=compuserve.com@...

oups.yahoo.com] On Behalf Of & Hill

Sent: Tuesday, December 02, 2003 3:15 PM

To: ketogenic

Subject: Re: and -Jill and all

Home for a while Jill, haven't really been here as we have been in PICU most

of the time.

now very critical, so unfortunately I have no good news to pass on at

all. Home briefly so I will fill you all in, but bear with me - complicated

as usual....

He took a long time to come out of the thiopental coma, and when he did, his

EEG showed multifocal spikes, which is not 's 'usual' Doose EEG. The

ACTH course may have worked to clear his Doose ones again, which hadn't been

too bad before all this hit the fan anyway. The tonic status that the coma

inducement was for, never came back, so we assume by removing the benzos we

did remove the cause of those ones.

As the spikes after the coma were not his usual ones, we agreed to retry

with some depakote, (loading dose IV) and we don't know whether it was this

or not, but the next day's EEG had improved a fair bit, so kept depakote on

board just in case it was. He was still pretty unresponsive though and on

his birthday (Sat) he had a perfectly NORMAL EEG. No spikes, no epileptiform

activity, background well developed, etc. Ketones virtually non existent,

(had been for days) so wasn't from that. He started to open his eyes and

follow with them a bit, showed response to pain (crying when changing

plasters etc) and squeezed 's hand on command a couple of times.

But the EEG result from Sun morn showed background had developed diffuse

slowing, even though there was still no seizure activity present. Then Sun

afternoon he started showing seizure activity and also 'abnormal' body

movements that were not seizures.

BHB took a huge leap from Sat night to Sun night, by 6 pm Sun it was 6.2.

Obviously this was not from caloric intake (had been reduced to allow for

comatose state), so our fear is he burnt a lot of body fat to reach this

highly ketotic state, and with it released meds stored from fatty tissues

(both benzos and thiopental) and in conjunction with high bhb, and by then

theraputic level of depakote, it tipped him back into 'whatever' caused all

this to start in the first place. Drs are not convinced there is a tie in

with this latest crisis, but agreed we had to drop ketones quickly, which we

have done - keeping them below a BHB of 2.0.

I don't know the answer, it may be the cold turky diaz withdrawal has given

the multi focal spikes, that may have resolved in time without any drug

intervention, and by intorducing medication it may now be a toxicity issue

again, it may that any state he was in up on the ward before the coma has

now changed his brain activity, but if that were the case, it doesn't

explain his normal EEG in between. It may be something underlying that we

will never know the answer to.

Because the EEG deteriorated over the last few days (changing focuses in the

brain - not a good prognostic sign) and clinical seizures escalated, more

meds were of course loaded up (we had no choice - the convulsive componenet

means leaving him places too much strain on his heart). Last night he had

phenytoin loads on top of an increased depakote dose, the convulsive

componenet dulled a bit, but possibly only because the muscles were that

sedated they are not moving as much. Our only hope is that as these are not

his 'usual' seizures, that meds that would usually aggravate his condition

could work on these new ones, but I am not that hopeful. If it is a toxicity

issue again, he is too deeply into the meds and seizure cycle to come out of

it without intervention like induced coma again, and everyone is loath to do

this because of the pneumonia he contracted during the first one.

Benzos, which of course would have usually been tried by now, may trigger a

tonic crisis again, and no one wants to take this risk, but I have to say I

am coming close to even resorting to that.

He has remained unresponsive since Sat morn, and is showing signs of

neurolgical dysfunction, possibly from the seizures not allowing usual

functioning, but possibly from brain damage. Repeat MRI today, may or may

not show damage, (doesn't alway show specific changes even when damage has

occurred) his one 2 weeks ago was normal. Spinal tap done last night in case

he developed something secondary whilst in the coma (brain infection/abcess

or something) to bring all this on, but the Drs say the appearance of the

spinal fluid (clear etc) and the intial testing looked like this was not the

cause. Sent away for cultures, may take 5-7 days for a result.

My feelings? That this is med/diet related, but unable to find a way out of

it. He is an 'unknown' for Drs, they have not seen this situation before,

and accordingly they can only try what do they 'know'.

His survival chances are not that promising at this point, but even if we

are able to stop these seizures, it is doubtful he will come out of this as

the '' that we know. Still a chance, as neuro says, as has

faced some pretty precarious situations before and bounced back, but he his

brain and body are very tired, and I believe his usual strength and ability

to fight is waning.

Fairly devastated as you can imagine, a bit numb to be honest, hard to

believe that a few short weeks ago he was the best we had seen him for ages,

both cognitively and seizure wise.

Heading back in now to join , will update when I can,

PS - his repeat carntine level taken the day he was admitted after 2 weeks

of 'theraputic' dose showed total carn level as 122 (!!) before it was

ditched - so it had skyrocketed as we had presumed. Free level was high as

well, acyl ratio was v high, but can't remember actual figure.

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

> Hi

> Has anyone heard from lately? I am wondering how is going. I

> think it's about a week since posted to the list so I'm a

> bit concerned.

>

> If you read this , I hope that things are improving for .

> Take care and big hugs to you all.

> Jill &

>

December 3, 2003

,

Thank you for taking time to update all of us. I think about you and

often and keep hoping and praying that things will work out

for you. I feel so bad about all you are going through right now.

You are an amazing mom. Stay strong and keep fighting. Miracles do

happen.

>

> Home for a while Jill, haven't really been here as we have been in

PICU most

> of the time.

> now very critical, so unfortunately I have no good news to

pass on at

> all. Home briefly so I will fill you all in, but bear with me -

complicated

> as usual....

> He took a long time to come out of the thiopental coma, and when he

did, his

> EEG showed multifocal spikes, which is not 's 'usual' Doose

EEG. The

> ACTH course may have worked to clear his Doose ones again, which

hadn't been

> too bad before all this hit the fan anyway. The tonic status that

the coma

> inducement was for, never came back, so we assume by removing the

benzos we

> did remove the cause of those ones.

> As the spikes after the coma were not his usual ones, we agreed to

retry

> with some depakote, (loading dose IV) and we don't know whether it

was this

> or not, but the next day's EEG had improved a fair bit, so kept

depakote on

> board just in case it was. He was still pretty unresponsive though

and on

> his birthday (Sat) he had a perfectly NORMAL EEG. No spikes, no

epileptiform

> activity, background well developed, etc. Ketones virtually non

existent,

> (had been for days) so wasn't from that. He started to open his

eyes and

> follow with them a bit, showed response to pain (crying when

changing

> plasters etc) and squeezed 's hand on command a couple of

times.

> But the EEG result from Sun morn showed background had developed

diffuse

> slowing, even though there was still no seizure activity present.

Then Sun

> afternoon he started showing seizure activity and also 'abnormal'

body

> movements that were not seizures.

> BHB took a huge leap from Sat night to Sun night, by 6 pm Sun it

was 6.2.

> Obviously this was not from caloric intake (had been reduced to

allow for

> comatose state), so our fear is he burnt a lot of body fat to reach

this

> highly ketotic state, and with it released meds stored from fatty

tissues

> (both benzos and thiopental) and in conjunction with high bhb, and

by then

> theraputic level of depakote, it tipped him back into 'whatever'

caused all

> this to start in the first place. Drs are not convinced there is a

tie in

> with this latest crisis, but agreed we had to drop ketones quickly,

which we

> have done - keeping them below a BHB of 2.0.

> I don't know the answer, it may be the cold turky diaz withdrawal

has given

> the multi focal spikes, that may have resolved in time without any

drug

> intervention, and by intorducing medication it may now be a

toxicity issue

> again, it may that any state he was in up on the ward before the

coma has

> now changed his brain activity, but if that were the case, it

doesn't

> explain his normal EEG in between. It may be something underlying

that we

> will never know the answer to.

> Because the EEG deteriorated over the last few days (changing

focuses in the

> brain - not a good prognostic sign) and clinical seizures

escalated, more

> meds were of course loaded up (we had no choice - the convulsive

componenet

> means leaving him places too much strain on his heart). Last night

he had

> phenytoin loads on top of an increased depakote dose, the convulsive

> componenet dulled a bit, but possibly only because the muscles were

that

> sedated they are not moving as much. Our only hope is that as these

are not

> his 'usual' seizures, that meds that would usually aggravate his

condition

> could work on these new ones, but I am not that hopeful. If it is a

toxicity

> issue again, he is too deeply into the meds and seizure cycle to

come out of

> it without intervention like induced coma again, and everyone is

loath to do

> this because of the pneumonia he contracted during the first one.

> Benzos, which of course would have usually been tried by now, may

trigger a

> tonic crisis again, and no one wants to take this risk, but I have

to say I

> am coming close to even resorting to that.

> He has remained unresponsive since Sat morn, and is showing signs of

> neurolgical dysfunction, possibly from the seizures not allowing

usual

> functioning, but possibly from brain damage. Repeat MRI today, may

or may

> not show damage, (doesn't alway show specific changes even when

damage has

> occurred) his one 2 weeks ago was normal. Spinal tap done last

night in case

> he developed something secondary whilst in the coma (brain

infection/abcess

> or something) to bring all this on, but the Drs say the appearance

of the

> spinal fluid (clear etc) and the intial testing looked like this

was not the

> cause. Sent away for cultures, may take 5-7 days for a result.

> My feelings? That this is med/diet related, but unable to find a

way out of

> it. He is an 'unknown' for Drs, they have not seen this situation

before,

> and accordingly they can only try what do they 'know'.

> His survival chances are not that promising at this point, but even

if we

> are able to stop these seizures, it is doubtful he will come out of

this as

> the '' that we know. Still a chance, as neuro says, as

has

> faced some pretty precarious situations before and bounced back,

but he his

> brain and body are very tired, and I believe his usual strength and

ability

> to fight is waning.

> Fairly devastated as you can imagine, a bit numb to be honest, hard

to

> believe that a few short weeks ago he was the best we had seen him

for ages,

> both cognitively and seizure wise.

> Heading back in now to join , will update when I can,

>

> PS - his repeat carntine level taken the day he was admitted after

2 weeks

> of 'theraputic' dose showed total carn level as 122 (!!) before it

was

> ditched - so it had skyrocketed as we had presumed. Free level was

high as

> well, acyl ratio was v high, but can't remember actual figure.

>

> ----- Original Message -----

> From: " Jill " <jill@i...>

>

> > Hi

> > Has anyone heard from lately? I am wondering how is

going. I

> > think it's about a week since posted to the list so I'm a

> > bit concerned.

> >

> > If you read this , I hope that things are improving for

.

> > Take care and big hugs to you all.

> > Jill &

> >

December 3, 2003

...

I'm so sorry for all you and and your whole family are going

through. Poor little guy! Sounds like a roller coaster to say the

least. I know you must be tired past the point of exhaustion but you

just keep fighting and pushing for an idea...you are truly an amazing

mom. I will be praying for a miracle for you all...you guys surely

need a break in this long chain of events. Keep us posted when you

can...Hugs and prayers and positive vibes...Nan

December 3, 2003

Well just when we thought things couldn't get any MORE

complicated......Focal status has disappeared to show no epileptiform

activity whatsoever on the EEG yesterday, with the background on it's way

back up again. This in a kiddie who we were told 24 hrs prior appears

totally intractable to any treatment seizure wise and may not survive the

current seizures.

No one has a clue what is going on, and the most complicated part is that he

is still 'clinically' displaying 'seizures'.

No Doose /MAE activity whatsoever still (so prob ACTH still doing it's

thing) either clinically or on the EEG, the good thing about this (apart

from the obvious...) is that the meds that usually aggravate Doose seizure

types, we seem to be currently be getting away with using, ie - phenytoin.

As this one (which threw into virtual NCS when trialled 2 yrs ago) is

the only 'new' thing introduced since his EEG was so poor 24 hrs prior, we

have to all assume it is what has stopped the focal seizures - which it

apparently is usually quite successful in doing. And no TCs either (which

have yet to be captured on the EEG) in the past 24 hrs, so obviously no one

wants to touch anything right now.

If this is a cold turkey diaz withdrawal reaction we are seeing, then my

hope would be that these 'spasms' are somehow related to that, but they

certainly visisbly seen to go a bit beyond any 'muscle contraction'

description found on benzo withdrawal phenomonon. He is also still in the

main unresponsive, although he is crying again now when things are done to

him, and moves his feet away now if you tickle them - this wasn't happening

a couple of days ago.

Something very strange is definitely going on with him, (well duh, that is a

bit of an understatement) his current neurological state would normally have

indicated an MRI showing quite widespread brain damage, this was not the

case yesterday either. Some changes in frequency in the left temporal lobe

where the seizures were focused 2 days ago, but our Dr said you can see this

as a transient thing, and it is not always permanent - so a wait and see

one. Rest of the MRI - perfectly normal - another big surprise for his Drs

yesterday, who I think are ready to start investigating what planet he has

come down from

He is also having eposidic apneas, he is still not really 'sleeping' and

they occur in the main as his eyelids 'try' to close. So - looks like we now

have some movement disorder or something mixed into the bag, where he

clinically isn't sleeping, but may actually be going though sleep phases.

I asked if the apparent 'spasms' may be as a result of some damage that has

occurred though all of this, they say no, to be this marked they would

expect to see MRI changes, and that his overall clinical pattern does not

reflect anything like that.

So even though he didn't have the expected horrific EEG and MRI results

fully expected yesterday, something very serious still at play

neurologically, and as you may have figured by now.....each day sees

something very different happening. They have all gone into 'wait and see

mode' with him for today, I get the feeling they don't really know what else

to do...

I'm sure my next update will have something completely different added, but

for now I am grateful that whatever brought on these 'new' seizures gave him

a break, even if it was some coincidental temporary lapse in the timing of

the EEG.

I am of course frantically scambling round cyberland trying myself to find

out what the h*** is going on with him, and the only conclusions I can come

to so far are a nasty drug reaction (this will never be far from the top of

any of my lists) or some sort of mini stroke scenario (ischemic attacks)

that so far hasn't shown itself on the MRI. Hoping I am way off base with

that one....

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

To: <ketogenic >

> Hi

> Thanks for taking the time to update us about . I am so sorry to

hear

> that his condition is still so critical. My heart aches for you all.

> I can only begin to imagine how difficult things must be for you. I hope

> all the positive thoughts being sent to from all his Keto friends

> around the world results in some positive changes soon.

> Take care of yourself and try to stay strong.

> Hugs to you all

> Jill &

December 3, 2003

& Hill wrote:

> Well just when we thought things couldn't get any MORE

> complicated......Focal status has disappeared to show no epileptiform

> activity whatsoever on the EEG yesterday, with the background on it's

> way

> back up again.

Unbelievable......geez, what can we say but keep on hanging in

(((((((Sue and ))))))))

December 3, 2003

,

My heart just broke reading this message. I know this is a dark

time for you, but please know that you are not alone. There are

lots of keto families out here praying for you guys. Hang in there

and don't give up the fight! I sincerely hope confounds the

doctors yet again with a speedy and complete recovery!!

We're thinking of you!

, mom to Langan

>

> Home for a while Jill, haven't really been here as we have been in

PICU most

> of the time.

> now very critical, so unfortunately I have no good news to

pass on at

> all. Home briefly so I will fill you all in, but bear with me -

complicated

> as usual....

> He took a long time to come out of the thiopental coma, and when

he did, his

> EEG showed multifocal spikes, which is not 's 'usual' Doose

EEG. The

> ACTH course may have worked to clear his Doose ones again, which

hadn't been

> too bad before all this hit the fan anyway. The tonic status that

the coma

> inducement was for, never came back, so we assume by removing the

benzos we

> did remove the cause of those ones.

> As the spikes after the coma were not his usual ones, we agreed to

retry

> with some depakote, (loading dose IV) and we don't know whether it

was this

> or not, but the next day's EEG had improved a fair bit, so kept

depakote on

> board just in case it was. He was still pretty unresponsive though

and on

> his birthday (Sat) he had a perfectly NORMAL EEG. No spikes, no

epileptiform

> activity, background well developed, etc. Ketones virtually non

existent,

> (had been for days) so wasn't from that. He started to open his

eyes and

> follow with them a bit, showed response to pain (crying when

changing

> plasters etc) and squeezed 's hand on command a couple of

times.

> But the EEG result from Sun morn showed background had developed

diffuse

> slowing, even though there was still no seizure activity present.

Then Sun

> afternoon he started showing seizure activity and also 'abnormal'

body

> movements that were not seizures.

> BHB took a huge leap from Sat night to Sun night, by 6 pm Sun it

was 6.2.

> Obviously this was not from caloric intake (had been reduced to

allow for

> comatose state), so our fear is he burnt a lot of body fat to

reach this

> highly ketotic state, and with it released meds stored from fatty

tissues

> (both benzos and thiopental) and in conjunction with high bhb, and

by then

> theraputic level of depakote, it tipped him back into 'whatever'

caused all

> this to start in the first place. Drs are not convinced there is a

tie in

> with this latest crisis, but agreed we had to drop ketones

quickly, which we

> have done - keeping them below a BHB of 2.0.

> I don't know the answer, it may be the cold turky diaz withdrawal

has given

> the multi focal spikes, that may have resolved in time without any

drug

> intervention, and by intorducing medication it may now be a

toxicity issue

> again, it may that any state he was in up on the ward before the

coma has

> now changed his brain activity, but if that were the case, it

doesn't

> explain his normal EEG in between. It may be something underlying

that we

> will never know the answer to.

> Because the EEG deteriorated over the last few days (changing

focuses in the

> brain - not a good prognostic sign) and clinical seizures

escalated, more

> meds were of course loaded up (we had no choice - the convulsive

componenet

> means leaving him places too much strain on his heart). Last night

he had

> phenytoin loads on top of an increased depakote dose, the

convulsive

> componenet dulled a bit, but possibly only because the muscles

were that

> sedated they are not moving as much. Our only hope is that as

these are not

> his 'usual' seizures, that meds that would usually aggravate his

condition

> could work on these new ones, but I am not that hopeful. If it is

a toxicity

> issue again, he is too deeply into the meds and seizure cycle to

come out of

> it without intervention like induced coma again, and everyone is

loath to do

> this because of the pneumonia he contracted during the first one.

> Benzos, which of course would have usually been tried by now, may

trigger a

> tonic crisis again, and no one wants to take this risk, but I have

to say I

> am coming close to even resorting to that.

> He has remained unresponsive since Sat morn, and is showing signs

of

> neurolgical dysfunction, possibly from the seizures not allowing

usual

> functioning, but possibly from brain damage. Repeat MRI today, may

or may

> not show damage, (doesn't alway show specific changes even when

damage has

> occurred) his one 2 weeks ago was normal. Spinal tap done last

night in case

> he developed something secondary whilst in the coma (brain

infection/abcess

> or something) to bring all this on, but the Drs say the appearance

of the

> spinal fluid (clear etc) and the intial testing looked like this

was not the

> cause. Sent away for cultures, may take 5-7 days for a result.

> My feelings? That this is med/diet related, but unable to find a

way out of

> it. He is an 'unknown' for Drs, they have not seen this situation

before,

> and accordingly they can only try what do they 'know'.

> His survival chances are not that promising at this point, but

even if we

> are able to stop these seizures, it is doubtful he will come out

of this as

> the '' that we know. Still a chance, as neuro says, as

has

> faced some pretty precarious situations before and bounced back,

but he his

> brain and body are very tired, and I believe his usual strength

and ability

> to fight is waning.

> Fairly devastated as you can imagine, a bit numb to be honest,

hard to

> believe that a few short weeks ago he was the best we had seen him

for ages,

> both cognitively and seizure wise.

> Heading back in now to join , will update when I can,

>

> PS - his repeat carntine level taken the day he was admitted after

2 weeks

> of 'theraputic' dose showed total carn level as 122 (!!) before it

was

> ditched - so it had skyrocketed as we had presumed. Free level was

high as

> well, acyl ratio was v high, but can't remember actual figure.

>

> ----- Original Message -----

> From: " Jill " <jill@i...>

>

> > Hi

> > Has anyone heard from lately? I am wondering how is

going. I

> > think it's about a week since posted to the list so I'm a

> > bit concerned.

> >

> > If you read this , I hope that things are improving for

.

> > Take care and big hugs to you all.

> > Jill &

> >

December 3, 2003

-- more complicated, yes, but more hopeful than yesterday's report.

i'm feeling guardedly encouraged. hang in there! jane