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one thing i noticed when hassan is in the hospital! he is listless, sleeps

most of the time and is unresponsive to outside stimuli!! i even once

demanded they wake him up before i take him home, lol.

well with his frequent hospitalizations i learned he reacts this way to

illness and the hospital. within a couple of days of being home he is his

cheery self again, maybe your child has the same reaction?

he was pretty ill, laboring to breathe is exhausting but also scarey for

anyone let alone a child. maybe his body just needs rest and love!! take him

home and see if he improves maybe? i am sorry i cant help you on the drug

wean because we have never done one.....hassan is stable(for the most part)

so we dont play with it as of yet. but i do think he may be just tired and

scared and home may be just what the dr ordered:)

maggie

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- hospital

> Hi all, my 'turn' to be home, thanks for all the messages re advice on the

resp distress and those asking after .

> may be out of hospital tomorrow, am not sure if I want this or not.

Cognitively, he is 'toast', lurching everywhere, drooling, slurring, you

would swear he was in NCS, but an EEG yesterday says definitely not. It was

the same as one a couple of months ago, the odd spike and wave, more on eye

closing, but overall, one of his best in 2 yrs! I don't get it, if this is

not behaviour from frequent seizure activity, what on earth is it. Love to

think it is med toxicity, that we can eventually 'fix', but I just don't

know any more. Really quite worried that some 'damage' at some stage has

occurred over the past couple of months, or that a progressive decline is

happening with him. If the EEG is the same as the last one, after a few

depakote/lamictal withdrawls, it can't be that this has had an adverse

affect on him, or it would show in seizure activity - wouldn't it???

> Is he really getting more toxic with each reduction we do, I just am

having such a hard time with the logics, especially when trying to explain

it to 's neuro, who doesn't feel 's AED levels are at a

theraputic level any more, never mind a toxic level. (Depakote 400 mgs,

lamictal 75 mgs, nitrazepam 8.25 mgs)

> Have to decide what 'plan' to take to the hospital tomorrow, whether to

push for an extended admission to do a speedier drug reduction, our schedule

of reductions means about 7 more months (at least) to go through. If he were

doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not

showing consisitent improvement with each reduction, and I'm sort of

starting to feel maybe he was better cognitively pre diet in between

(frequent) seizures, than he is now, where we only really have seizures

(except those pesky intermittent night ones) when doing lamictal reductions,

or he becomes really ill.

> The other thought we had is that he may have developed ESIS (sleep

status), but even if he has, we wouldn't know if that is because we've

reduced his meds, or because they need reducing, same old, same old.

> Anyway, that's where we're at, 's resp issues appear resolved now,

so that wee crisis can hopefully be filed away now....just got to figure

this other business out.

> By the way, the 'awake' bout of minor motor status that had on Mon

that scared us silly (used to always have this on awakening pre diet - first

thing to 'go' when he started the diet) was I think because his ketones were

only just 1.5 .(managed to test him about an hour later). He has never been

this low before, so pretty definite this allowed the bout of status to

happen - haven't seen it since Mon, and his ketones haven't dropped like

that again. Anyway, reading his admission notes today, not one staff member

at the hospital, including his neuro, have considered this relevant enough

to document. Not mentioned anywhere, and we really stressed the point to all

the Docs (and there were many) that examined him. A few notes made about

their opinion the depakote has been taken too low, but keto treatment

obviously not considered important enough. Really capped the day off!!!

> Off to sleep on it all,

> Hill in NZ

>

>

>

>

>

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Sorry to hear this, have been trying to follow along.

Why do you think he is toxic? From his behavior?

Are you weaning all meds at once or just Lamictal? Are you trying to wean

one or all? Are you weaning to see if he'll improve?

If he's worse, as you wean, why are you continuing? Maybe he needs it?

3 meds is alot, I agree, but if he's worse without them, his stablility is

the goal, not no meds, right?

How could he be getting more toxic as you reduce? Doesn't make sense to me

at all. Also, he is not on huge amounts of meds....

I'm not trying to challenge you , you have enough stress for sure!!

Just questioning what I read here. You sound very conflicted and

overwhelmed....understandable!!! But is the weaning stressing you also? I

guess I would just think...he's not very stable right now. Why push the

weaning on top of it all? In the hopes of him improving? Just trying to

understand....

hang in there, and hoping for a better time for -

Barb Swoyer

> Is he really getting more toxic with each reduction we do, I just am

having such a hard time with the logics, especially when trying to explain

it to 's neuro, who doesn't feel 's AED levels are at a

theraputic level any more, never mind a toxic level. (Depakote 400 mgs,

lamictal 75 mgs, nitrazepam 8.25 mgs)

> Have to decide what 'plan' to take to the hospital tomorrow, whether to

push for an extended admission to do a speedier drug reduction, our schedule

of reductions means about 7 more months (at least) to go through. If he were

doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not

showing consisitent improvement with each reduction, and I'm sort of

starting to feel maybe he was better cognitively pre diet in between

(frequent) seizures, than he is now, where we only really have seizures

(except those pesky intermittent night ones) when doing lamictal reductions,

or he becomes really ill.

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Hi ,

I was not on the list for a few weeks due to e-mail problems

and got back to day to see had been in hospital.

I'm so sorry to hear about what you all have been through.

Could it still be a withdrawal from the last med drops.

It is funny you thought he was in NCS. This is exactly what

Rohan was like last Thursday and Friday. He just wasn't

responding, was vacant and " zombie-like " . It scared me

more than ever before. His Dr. had wanted us to increase

his calories/protein as he is at a crucial stage in growth, and

we'd done it about a week ago. First he started getting

sleep sz that ended in partial behaviour. Then this NCS

type thing. His ketones were 8 all day.

I reduced ratio from 2.2 to 1.8 (over 3 days) then went back

to the old values of calories/prot. Things are better now, but

he's not quite there. I don't know whether this is progressive

thing brought to a sudden head by the change in food amts.

The school has been complaining that his work has been very

poor lately. We started Diamox today.

One thing I know is he seems to do better on small amounts of

food. Sz definitely related to meals. I recall that also has

a relationship between sz and food.

Anyway, I hope he's much better now. Hang in there and slow

down on the med wean till things settle.

Love & best wishes

Saro....Rohan's mum

- hospital

> Hi all, my 'turn' to be home, thanks for all the messages re advice on the

resp distress and those asking after .

> may be out of hospital tomorrow, am not sure if I want this or not.

Cognitively, he is 'toast', lurching everywhere, drooling, slurring, you

would swear he was in NCS, but an EEG yesterday says definitely not. It was

the same as one a couple of months ago, the odd spike and wave, more on eye

closing, but overall, one of his best in 2 yrs! I don't get it, if this is

not behaviour from frequent seizure activity, what on earth is it. Love to

think it is med toxicity, that we can eventually 'fix', but I just don't

know any more. Really quite worried that some 'damage' at some stage has

occurred over the past couple of months, or that a progressive decline is

happening with him. If the EEG is the same as the last one, after a few

depakote/lamictal withdrawls, it can't be that this has had an adverse

affect on him, or it would show in seizure activity - wouldn't it???

> Is he really getting more toxic with each reduction we do, I just am

having such a hard time with the logics, especially when trying to explain

it to 's neuro, who doesn't feel 's AED levels are at a

theraputic level any more, never mind a toxic level. (Depakote 400 mgs,

lamictal 75 mgs, nitrazepam 8.25 mgs)

> Have to decide what 'plan' to take to the hospital tomorrow, whether to

push for an extended admission to do a speedier drug reduction, our schedule

of reductions means about 7 more months (at least) to go through. If he were

doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not

showing consisitent improvement with each reduction, and I'm sort of

starting to feel maybe he was better cognitively pre diet in between

(frequent) seizures, than he is now, where we only really have seizures

(except those pesky intermittent night ones) when doing lamictal reductions,

or he becomes really ill.

> The other thought we had is that he may have developed ESIS (sleep

status), but even if he has, we wouldn't know if that is because we've

reduced his meds, or because they need reducing, same old, same old.

> Anyway, that's where we're at, 's resp issues appear resolved now,

so that wee crisis can hopefully be filed away now....just got to figure

this other business out.

> By the way, the 'awake' bout of minor motor status that had on Mon

that scared us silly (used to always have this on awakening pre diet - first

thing to 'go' when he started the diet) was I think because his ketones were

only just 1.5 .(managed to test him about an hour later). He has never been

this low before, so pretty definite this allowed the bout of status to

happen - haven't seen it since Mon, and his ketones haven't dropped like

that again. Anyway, reading his admission notes today, not one staff member

at the hospital, including his neuro, have considered this relevant enough

to document. Not mentioned anywhere, and we really stressed the point to all

the Docs (and there were many) that examined him. A few notes made about

their opinion the depakote has been taken too low, but keto treatment

obviously not considered important enough. Really capped the day off!!!

> Off to sleep on it all,

> Hill in NZ

>

>

>

>

>

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,

I say this very hesitantly, knowing that I really know nothing at all, but here

goes:

I really think you should consider pursuing the drug wean, maybe even faster

than you were. My daughter has now been off meds for 3.5 weeks, and only

continues to improve. I thought it would be faster, but I am happy with what I

am seeing. I wrote this out in detail a few days ago in a post Depakote wean.

We were in a similar position to you, not knowing if it was toxicity or the

results of seizures or NCS. In fact, your EEG is of interest to me because it

sure seems to indicate toxicity, not seizures. We had it easier because we only

had one med. However, we also were on a wean schedule that would have taken all

summer. Instead, we finished the wean in 4 days. It was the best thing we ever

did.

We were supposed to have an EEG yesterday, but Hannah has a bad cold, so we

rescheduled. It isn't until June 25. I am actually glad, because it gives us

more time to stabilize before we see what's going on.

Last week, she had only one seizure in six days. This is miraculous to us! She

is having a little more now, but I will chalk it up to the cold for now. We

will see what happens when the cold is gone.

I hope all goes well for you. Take my advice with a grain of salt. I can only

advise based on my experience. You need to go with your instinct. God will

lead you in hepling your child.

Regards,

- hospital

Hi all, my 'turn' to be home, thanks for all the messages re advice on the

resp distress and those asking after .

may be out of hospital tomorrow, am not sure if I want this or not.

Cognitively, he is 'toast', lurching everywhere, drooling, slurring, you would

swear he was in NCS, but an EEG yesterday says definitely not. It was the same

as one a couple of months ago, the odd spike and wave, more on eye closing, but

overall, one of his best in 2 yrs! I don't get it, if this is not behaviour from

frequent seizure activity, what on earth is it. Love to think it is med

toxicity, that we can eventually 'fix', but I just don't know any more. Really

quite worried that some 'damage' at some stage has occurred over the past couple

of months, or that a progressive decline is happening with him. If the EEG is

the same as the last one, after a few depakote/lamictal withdrawls, it can't be

that this has had an adverse affect on him, or it would show in seizure activity

- wouldn't it???

Is he really getting more toxic with each reduction we do, I just am having

such a hard time with the logics, especially when trying to explain it to

's neuro, who doesn't feel 's AED levels are at a theraputic level

any more, never mind a toxic level. (Depakote 400 mgs, lamictal 75 mgs,

nitrazepam 8.25 mgs)

Have to decide what 'plan' to take to the hospital tomorrow, whether to push

for an extended admission to do a speedier drug reduction, our schedule of

reductions means about 7 more months (at least) to go through. If he were doing

okay, I wouldn't mind, am not 'anti drugs' at all, but he is not showing

consisitent improvement with each reduction, and I'm sort of starting to feel

maybe he was better cognitively pre diet in between (frequent) seizures, than he

is now, where we only really have seizures (except those pesky intermittent

night ones) when doing lamictal reductions, or he becomes really ill.

The other thought we had is that he may have developed ESIS (sleep status),

but even if he has, we wouldn't know if that is because we've reduced his meds,

or because they need reducing, same old, same old.

Anyway, that's where we're at, 's resp issues appear resolved now, so

that wee crisis can hopefully be filed away now....just got to figure this other

business out.

By the way, the 'awake' bout of minor motor status that had on Mon that

scared us silly (used to always have this on awakening pre diet - first thing to

'go' when he started the diet) was I think because his ketones were only just

1.5 .(managed to test him about an hour later). He has never been this low

before, so pretty definite this allowed the bout of status to happen - haven't

seen it since Mon, and his ketones haven't dropped like that again. Anyway,

reading his admission notes today, not one staff member at the hospital,

including his neuro, have considered this relevant enough to document. Not

mentioned anywhere, and we really stressed the point to all the Docs (and there

were many) that examined him. A few notes made about their opinion the depakote

has been taken too low, but keto treatment obviously not considered important

enough. Really capped the day off!!!

Off to sleep on it all,

Hill in NZ

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I have no idea if this is related or not - but the first time Mike was

admitted for breathing problems he was so tired all he did when we got a

bed was sleep. Then the next day he was happy and awake but just not

" right " and slurring words and off balance falling over his own feet.

We were discharged that day and things got better by the weekend

(discharged on Thursday). Not sure if there is some connection or not

but that is what happened with us.

richard & susan hill wrote:

> Hi all, my 'turn' to be home, thanks for all the messages re advice

> on the resp distress and those asking after .

> may be out of hospital tomorrow, am not sure if I want this or

> not. Cognitively, he is 'toast', lurching everywhere, drooling,

> slurring, you would swear he was in NCS, but an EEG yesterday says

> definitely not. It was the same as one a couple of months ago, the odd

> spike and wave, more on eye closing, but overall, one of his best in 2

> yrs! I don't get it, if this is not behaviour from frequent seizure

> activity, what on earth is it. Love to think it is med toxicity, that

> we can eventually 'fix', but I just don't know any more. Really quite

> worried that some 'damage' at some stage has occurred over the past

> couple of months, or that a progressive decline is happening with him.

> If the EEG is the same as the last one, after a few depakote/lamictal

> withdrawls, it can't be that this has had an adverse affect on him, or

> it would show in seizure activity - wouldn't it???

> Is he really getting more toxic with each reduction we do, I just am

> having such a hard time with the logics, especially when trying to

> explain it to 's neuro, who doesn't feel 's AED levels are

> at a theraputic level any more, never mind a toxic level. (Depakote

> 400 mgs, lamictal 75 mgs, nitrazepam 8.25 mgs)

> Have to decide what 'plan' to take to the hospital tomorrow, whether

> to push for an extended admission to do a speedier drug reduction, our

> schedule of reductions means about 7 more months (at least) to go

> through. If he were doing okay, I wouldn't mind, am not 'anti drugs'

> at all, but he is not showing consisitent improvement with each

> reduction, and I'm sort of starting to feel maybe he was better

> cognitively pre diet in between (frequent) seizures, than he is now,

> where we only really have seizures (except those pesky intermittent

> night ones) when doing lamictal reductions, or he becomes really ill.

> The other thought we had is that he may have developed ESIS (sleep

> status), but even if he has, we wouldn't know if that is because we've

> reduced his meds, or because they need reducing, same old, same old.

> Anyway, that's where we're at, 's resp issues appear resolved

> now, so that wee crisis can hopefully be filed away now....just got to

> figure this other business out.

> By the way, the 'awake' bout of minor motor status that had on

> Mon that scared us silly (used to always have this on awakening pre

> diet - first thing to 'go' when he started the diet) was I think

> because his ketones were only just 1.5 .(managed to test him about an

> hour later). He has never been this low before, so pretty definite

> this allowed the bout of status to happen - haven't seen it since Mon,

> and his ketones haven't dropped like that again. Anyway, reading his

> admission notes today, not one staff member at the hospital, including

> his neuro, have considered this relevant enough to document. Not

> mentioned anywhere, and we really stressed the point to all the Docs

> (and there were many) that examined him. A few notes made about their

> opinion the depakote has been taken too low, but keto treatment

> obviously not considered important enough. Really capped the day

> off!!!

> Off to sleep on it all,

> Hill in NZ

>

>

>

>

>

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Everyone certainly has an opinion, what works for some won't work for

others. My argument against proceeding w/ weaning, even faster, is that

is dealing with what seems to be a very medically unstable child.

Personally, in that situation, I would think the best thing to do first is

get him stable.

I've been following this list for a number of years. I have seen parents do

everything in their power to wean off meds, only to end up worse than before

at the end of the day.

The goal here is a healthy, stable child. Hopefully seizure free.

Something sounds very wrong with , whether or not it is showing up on

his EEG. Maybe the meds are helping and maybe not. It's a horrible thing

not to know. But, when a child is this sick and seemingly this unstable,

quickly withdrawing the meds can make a bad situation worse. My guess is

that's more the norm than the exception.

Nothing wrong with weaning, but always better to use caution.

Some kids needs the meds to be seizure free. Some kids do better without

them. My kid is almost the same either way, except his EEG looks better on

the meds. He has been both weaned completely and eventually put back on.

It really just depends on the kid. The focus is better health and fewer

seizures....many accomplish that on meds too.

Just another way of looking at it...

Barb Swoyer, Jake's mom

Re: - hospital

> ,

>

> I say this very hesitantly, knowing that I really know nothing at all, but

here goes:

>

> I really think you should consider pursuing the drug wean, maybe even

faster than you were.

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Barb,

Would be saying exactly the same, and haven't touched meds for 3 weeks, (was

in fact considering upping depakote again last week before the resp thing

hit) but his EEG is all but clear when he is awake, stopping a wean is done

because the kiddie has seizures as a result of withdrawing the meds.

This is why he had an EEG, to see if the latest reduction, or illness in the

weekend had caused a loss of (sub clinical)seizure control. Nope, definitely

(clinical) seizures in the weekend when in resp distress with low ketones,

but none visible since his hosp admission (aint that always the way).

The issue of one med rising as the other one is reduced is all I can think

of as far as AEDs go, he is not great when he wakes, but is 10 time worse an

hour later after breakfast and meds. Drooling, 'lurching', slurring,

hyperactive, 'not there'.

The only thought we had was to withhold one, or all of his morn meds for an

hour or 2 today and see if the downhill slide happens still, risky though,

still pondering.....will decide shortly, wish us luck

Hill

Re: - hospital

> Sorry to hear this, have been trying to follow along.

>

> Why do you think he is toxic? From his behavior?

> Are you weaning all meds at once or just Lamictal? Are you trying to wean

> one or all? Are you weaning to see if he'll improve?

> If he's worse, as you wean, why are you continuing? Maybe he needs it?

> 3 meds is alot, I agree, but if he's worse without them, his stablility is

> the goal, not no meds, right?

> How could he be getting more toxic as you reduce? Doesn't make sense to

me

> at all. Also, he is not on huge amounts of meds....

>

> I'm not trying to challenge you , you have enough stress for sure!!

> Just questioning what I read here. You sound very conflicted and

> overwhelmed....understandable!!! But is the weaning stressing you also?

I

> guess I would just think...he's not very stable right now. Why push the

> weaning on top of it all? In the hopes of him improving? Just trying to

> understand....

> hang in there, and hoping for a better time for -

> Barb Swoyer

>

>

> > Is he really getting more toxic with each reduction we do, I just am

> having such a hard time with the logics, especially when trying to explain

> it to 's neuro, who doesn't feel 's AED levels are at a

> theraputic level any more, never mind a toxic level. (Depakote 400 mgs,

> lamictal 75 mgs, nitrazepam 8.25 mgs)

>

> > Have to decide what 'plan' to take to the hospital tomorrow, whether to

> push for an extended admission to do a speedier drug reduction, our

schedule

> of reductions means about 7 more months (at least) to go through. If he

were

> doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not

> showing consisitent improvement with each reduction, and I'm sort of

> starting to feel maybe he was better cognitively pre diet in between

> (frequent) seizures, than he is now, where we only really have seizures

> (except those pesky intermittent night ones) when doing lamictal

reductions,

> or he becomes really ill.

>

>

>

>

>

>

> " 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

>

>

>

>

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richard & susan hill wrote:

> Is he really getting more toxic with each reduction we do, I just am

> having such a hard time with the logics, especially when trying to

> explain it to 's neuro, who doesn't feel 's AED levels are

> at a theraputic level any more, never mind a toxic level. (Depakote

> 400 mgs, lamictal 75 mgs, nitrazepam 8.25 mgs)

>

Barb S made some good points, problem is there is no way to tell whether

the kid needs the drug or they are hurting things until after the fact,

hindsight is 100%. One comment I can make - I have seen kids toxic on

the depakote with the diet, seizures out of control, drs demanding dose

be increased because its it way below theraputic values. I know of a

few parents who went the other way and reduced the drugs, things

improved, of course sometimes only after getting worse.. Seems like

with depakote, with every drop it can get worse, the lower the level,

the worse the effect until its all gone.

But its all a geussing game. Follow your gut, make a choice, try to

commit to stick it out for at least four week, preferably a little

longer and then reassess

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,

Thanks for the input, home now, big battle before we left, still no wiser.

Neuro jumped on one of my theories that may be experiencing more sub

clinical sleep seizure activity since the last few med reductions, but

refused an overnight EEG to find out for sure. Probably wouldn't help that

much anyway, haven't got an overnight baseline one to compare it to in the

past year.

Also, the hole in this theory is that although 'shaky' when he wakes up,

's balance, speech etc is nowhere near as bad as it goes after the

meds. If sleep seizures were the culprit, I would expect to see this even

more when he first wakes, and an improvement as the morn goes on, not the

other way round.

Onto the 2nd theory of somehow still being toxic, discounted it most

abruptly, I quoted some e-mails I had saved about needing to wean in tandem,

meds being more potent on the diet etc, he listened, but got really

defensive when asked if he had any medical literature on the

diet/meds combination.

Anyways, basically back to figuring it out ourselves, will keep you posted,

Hill in NZ

- hospital

>

>

> Hi all, my 'turn' to be home, thanks for all the messages re advice on

the resp distress and those asking after .

> may be out of hospital tomorrow, am not sure if I want this or

not. Cognitively, he is 'toast', lurching everywhere, drooling, slurring,

you would swear he was in NCS, but an EEG yesterday says definitely not. It

was the same as one a couple of months ago, the odd spike and wave, more on

eye closing, but overall, one of his best in 2 yrs! I don't get it, if this

is not behaviour from frequent seizure activity, what on earth is it. Love

to think it is med toxicity, that we can eventually 'fix', but I just don't

know any more. Really quite worried that some 'damage' at some stage has

occurred over the past couple of months, or that a progressive decline is

happening with him. If the EEG is the same as the last one, after a few

depakote/lamictal withdrawls, it can't be that this has had an adverse

affect on him, or it would show in seizure activity - wouldn't it???

> Is he really getting more toxic with each reduction we do, I just am

having such a hard time with the logics, especially when trying to explain

it to 's neuro, who doesn't feel 's AED levels are at a

theraputic level any more, never mind a toxic level. (Depakote 400 mgs,

lamictal 75 mgs, nitrazepam 8.25 mgs)

> Have to decide what 'plan' to take to the hospital tomorrow, whether to

push for an extended admission to do a speedier drug reduction, our schedule

of reductions means about 7 more months (at least) to go through. If he were

doing okay, I wouldn't mind, am not 'anti drugs' at all, but he is not

showing consisitent improvement with each reduction, and I'm sort of

starting to feel maybe he was better cognitively pre diet in between

(frequent) seizures, than he is now, where we only really have seizures

(except those pesky intermittent night ones) when doing lamictal reductions,

or he becomes really ill.

> The other thought we had is that he may have developed ESIS (sleep

status), but even if he has, we wouldn't know if that is because we've

reduced his meds, or because they need reducing, same old, same old.

> Anyway, that's where we're at, 's resp issues appear resolved now,

so that wee crisis can hopefully be filed away now....just got to figure

this other business out.

> By the way, the 'awake' bout of minor motor status that had on

Mon that scared us silly (used to always have this on awakening pre diet -

first thing to 'go' when he started the diet) was I think because his

ketones were only just 1.5 .(managed to test him about an hour later). He

has never been this low before, so pretty definite this allowed the bout of

status to happen - haven't seen it since Mon, and his ketones haven't

dropped like that again. Anyway, reading his admission notes today, not one

staff member at the hospital, including his neuro, have considered this

relevant enough to document. Not mentioned anywhere, and we really stressed

the point to all the Docs (and there were many) that examined him. A few

notes made about their opinion the depakote has been taken too low, but keto

treatment obviously not considered important enough. Really capped the day

off!!!

> Off to sleep on it all,

> Hill in NZ

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