Re: /-

[Guest guest]

Well no adverse effects so far from the carnitine has to be a good sign -

slowly does it increasing, and hopefully he will only get good results from it's

introduction. Trying to remember how long it took for 's ketones to shoot

up too high after introducing it here, I think it was when we got to about 3

capsules a day, so between 30-40 mgs per kg in his case - he was a lot older and

heavier than when we tried it. But they prob all respond differently to

it, so dunno how useful that info actually is

And yes, prob a couple of weeks for elimination of anything they react

adversely to, like the sorbitol etc would be about right, and I do remember

reading that sometimes their reaction can be worse while it is on it's way out,

but we haven't really had anything like that with that I know of, so not

100% sure.

He is actually pretty laid back about whether he goes to school or not btw -

it is me that gets stressed when he is to and fro, lol, not him...I just took

his lunch down to school now actually (ran out of time to pack it this morn, as

I often do...) and I could see thru the classroom window that he was head down

busy doing somthing, so that was good to see

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

From: michelle paulson

Well... am sure you are anxiously awaiting the

results. Make sure you let us know when you get them.

Got a bit anxious myself, but know it takes at least

a week or 10 days to get results from a 24 hour

reading. Ugh...

Sounds like pure " luck " that shall be returning

to school just before a school holiday. But... no

seizures. It has to be a bit stressful missing a

whole week of school and then returning - which you

know is yet another trigger. I'd actually be eladed

after each illness or stressful event knowing

made it through w/out seizure activity. Adrenaline

rush, I'm sure.

's doing great w/ the Carnitor. I'm going super

slow - still only giving him one 330mg. pill per day

but may increase tomorrow. He had about 10 myoclonic

jerks on Sat. which was a bit " shocking " . Honestly

though, we started giving him lactose free yogurt

cream about 3 wks. ago and for the past week, were

seeing (or hearing) about 1-3 myoclonic jerks every

other day. I " think " that, perhaps, he just can't

handle the polysorbate 80 as he, in the past, has

reacted terribly to any " sorbitol " . Have taken it

away but expect it to last for up to a couple of weeks

before it's eliminated from his system. Don't think

the jerks are related to the Carnitor in the least so

that's the good news. Also back to meal plans that we

are sure are OK for the time being. Very limited but

plan on introducing things one at a time from here on

out.

Hope enjoys this week now that he is feeling

better. You are in my thoughts.

[Guest guest]

Nope, no ECG results yet, appt looming with neuro tomorrow though, he might

have a report that hasn't been copied to me - if not, I will get him to chase it

up, as the cardiac work ups come under the keto umbrella for .

Another week after this still of school hols they only started this Mon

here, but because of D's illness before the last week of term, it feels like it

has been for a lot longer.......

Escaping shortly with my 10 yr old to do some birthday pressie shopping for

her friend's party tonight, so hubby (day off today) will be on and

watch here while we go and hit the shops - can't complain tooooo much about that

Everything crossed that carries on going upwards and onwards, how

wonderful if this carnitine was his last tweak needed....touching some wood for

you

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

From: michelle paulson

Hi -

Thanks for thinking of . I was scared to make

this last increase - thinking he's around 30-40mg./kg

now and remembered that's where you thought

started having trouble. It's day 3 of the last

increase and so far, so good.

I have, indeed, noticed a difference w/increased

energy and w/better coordination so am thankful I

decided to supplement. Hoping he continues to get

stronger as we get closer to a therapeutic range.

Didn't do anything to the diet w/cals. or ratio. With

each increase has had 3 days of diarrhea/poop

blow outs but then his BM's have returned to normal so

am hoping the same holds true this time (tomorrow

being the 3rd day) as I plan to hold at 990mg for a

good bit before I make another increase just to see

what happens to the diet and w/seizure control.

Haven't checked blood ketones the past 5 days. Didn't

notice a difference at all when he was getting 660mg.

But only have 2 sticks left until my next order

arrives this week so have been holding off checking

them until he's at this dose for a few days.

He does seem heavier to me - have noticed his pants

fitting VERY snug the past couple of days and meant to

get over to the Dr. for a weight check but didn't have

time today. Will do so tomorrow. I'll let you know.

So, 's on Holiday, how's that going? Did you

ever get his results from the ECG? Have just been

wondering about him and thought you may have gotten

some news.

Hopefully you are finding some time to enjoy

yourselves. This is 's last week to be home, I

believe.

Hope all continues to go well w/. Keep us

updated.

[Guest guest]

Yep, you read it right - started the dep wean on Sat night. And yes, it was

because of his carnitine deficiency. Had a neuro appt last Thurs, and he

although he agreed that is not currently symptomatic, he is worried that

if his levels keep falling much lower he might soon be. So it was either add

carn again, or start getting rid of the depakote. As it was probably gonna be

the one we started weaning first in Dec anyway, the unanimous decision (makes a

nice change was to bring it forward a few mths and cross fingers basically.

He was on 500 mgs per day, so roughly 18 mgs per kilo, and we took 50 mgs away

from his midnight dose - aim is to stop these midnight wakings for that dose as

well asap, (had enough of that, so has ...) so a bit of tweaking with

other doses to even blood levels out as we reduce is gonna have to be done too.

Keeping close to 10% decremental reductions if poss, shouldn't be too hard as he

is on 100 mg scored crushable tabs that break up fairly evenly. Prob reduce

every 10-14 days, and if that seems to be too fast, we'll slow it down I guess.

Dep can have the effect of reducing topomax levels, so we have to see what

happens with that one, and of course we also have to see what effect the wean is

going to have on the diet, may have to tweak that too, but so far I haven't

noticed any difference in urine ketones, need to get some blood strips to know

for sure though.

Day 5 today on the lower dose and I haven't seen anything seizure wise, (have

him sleeping with us at the mo to keep a close eye on the sleep seizure side of

things, as this is prob where it will happen with if it is going to)

though his behaviour tells me he isn't getting away with it all totally

scott-free. Ugh - but I can live with it, and hope it is only temporary, he

should come right as his blood levels even out towards the end of ther week.

That's the plan anyway

And nope, still no 24 hr ECG holter result, neuro hadn't heard anything yet

either

How is the carnitine working out for - what dose are you up to, and

does it look like it is doing it's job?

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

From: michelle paulson

Hi -

Did I read that correctly - that you've decided to

wean 's Depakote? That's awesome on one hand

but scary, I know. Have you started yet? Just wanted

you to know I'm thinking of you. What dosage is he

on? Did you decide to do this b/c of the Carnitine

deficiency?

Results from the ECG yet?

('s mom)

__________________________________________________

[Guest guest]

Hi , glad he is picking up again, and I think you are doing the right

thing by giving it all a bit more time. Has anyone suggested carn blood levels

as he goes thru the incrementing up, or is that on hold till you think he is in

the right place clinically? There is no point doing them here to check before

increasing or decreasing as the results can take anywhere from 7 days to 3 mths

(!) to come back, but not sure how soon you guys get them there. Plus they are

an indication only, it will tell you what effect supplementing has had so far

blood-wise, but it won't tell you if it is where needs to be to have the

optimum effect. Like he may need 100 mg per kg, some may only need 50 mgs per

kg, sort of thing...

Re 's dep wean, got to the point of deciding to go midway, like a 25 mg

reduction last night instead of a 50 mg one, (so still plodding on with getting

the levels down but hopefully not too much to take at once reaction wise before

we go away) then had a major mix up with his Dad... I fell asleep before his

midnight dose was due, so did last night's dosing. I checked this morn,

and he said he had given the old level......

Soooo, that has me a spin again, like mebbe that was meant to be and I should

just leave it alone till we get back. Which is where I think I'm at. Perhaps.

Yes well, that's how decisive I am on this one, dunno basically

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

From: michelle paulson

Hey -

Printed your message - read and reread all of your

thoughts - thanks for taking the time to jot them down

for me.

I'm taking your advice and will take things super

slow. is doing amazingly well now that he is

over his virus. Am thinking of increasing his

Carnitor one more time - sitting tight for two wks. to

see if we get increased ketones. Don't believe he is

in a therapeutic range right now. Also will wait to

see if he drops some of this weight before I adjust

cals/ratio. I'll go another 3-4 wks. and then make my

decision. Who knows if it is the right one but gotta

take a chance.

Hoping 's 7th night w/the reduction went well.

What did you decide to do about the next reduction?

Did you do it or did you decide to wait until after

vacation? I'm sure that was certainly a dilemma.

I've been there before.

HUGS!

[Guest guest]

Hi ,

Vacation was good thanx, tiring and kinda stressful being in a smallish

holiday apartment for a week with my full-on tribe, but overall, very glad we

went.

We were on the Gold Coast in Brisbane Australia, so did the theme parks there

- Movie World, Dream World, Sea World...each one needs a whole day there to fit

it all in, and even then we left thinking we could have done another full day at

each place to get the full benefit

had an overheating reaction after his first day out in the heat there,

so that was a bit of a worry, he swelled up like a balloon (heat edema) with a

rash (picking my friend topomax was the cause of such an extreme reaction, the

other kiddies were fine..) that took 3 days to dissipate, so we had to be very

careful keeping him out of the heat, indoor air con stuff, and keeping him

hydrated etc. Lesson learnt...

He bounced back fine though and kept up fairly well with everyone, did quite a

few rides at the theme parks (the ones than Mother Hen here would let him go

on...) and it was lovely to see him be able to enjoy it all with the others. The

keto part was a bit of a pain in the you know what, but it was do-able.

and I are trying to figure out now how to get away for a kid free hol in the

near future to recover

Yes, we did the 2nd dep reduction the day after we got home, day 7 today and

so far so good, though has developed a cold, which isn't what we need

right now....but fingers crossed he'll get thru it ok. He didn't have any

seizures with all the triggers of the vacation, the overheating incident, extra

exertion, change in med/diet routine, flying etc, so I'm hoping the same will

apply with this cold. Could have done without it tho....

I won't ask if 's streak is continuing but if it is....yes, I think

you are wise to touch nothing at this stage. I would have thought those diet

changes would have shown something by now too, but I guess a month is a good

benchmark time wise. If the good streak ends though, then maybe then would be a

good time to try tweaking the carn up, but for now I s'pose you have to follow

the adage if it aint broke, don't try to fix.....Patient hat on

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

From: michelle paulson

Hi -

First off, how was your vacation? Where did you go?

How did do? Did you make another reduction

after you returned?

's AOK. We've actually been out-of-town so just

sat down to 180plus messages. Won't get thru all of

them but will scan many.

Turned out that Coop caught a cold which explained his

higher glucose readings. He hasn't had any seizures

since he first came down w/his illness so it has been

12 days now seizure free (knock wood). This is

getting into dangerous territory as he hasn't made it

more than 14 days in the past. Hasn't been acting

" weird " or " off " like normal when we get this many

days seizure free behind us. Hopefully the electrical

activity hasn't been building since making the change

w/ratio/calories/protein. It's been 2 wks. now that

we made that change and we haven't seen ANY difference

w/ketones. Granted, the first wk. he was sick so

wouldn't expect to see higher ketones but he's

perfectly healthy now and his ketones are still 1.4

upon rising and 5. something before bed. Don't know

how long before the metabolism stabilizes to the point

of recognizing ketone change. Seems like I should be

noticing a difference by now if there was going to be

one. He's still at 990mg. of Carnitor. I keep

waffling on increasing his dosage. Would love to if

it continued to help w/coordination and increasing

ketones but don't want to give too much to the point

where I'm wasting it. No difference in height or wt.

either. Hopefully after a month or so.

Nice to have you back - hope you enjoyed some down

time!

[Guest guest]

That is very strange - no weight loss at all despite lowering calories and

adding the carnitine. What is he doing...

Mind you, he has stopped gaining, so the changes must have done something....

When we play with calories here, we usually only do it in 25 cal steps, but

most of our changes over the yrs have been upwards, not down. So my dietician is

one who would probably agree with a 20 cal shift, but logically looking at it,

it seems kinda hard to imagine that small a change would make much impact

doesn't it?

Right now it will be too hard to assess anything, as if he is ill, not v

active and hardly eating anything things are gonna be way out of whack cal wise

anyway. Perhaps you are right and the illness might be the 'push' needed for a

bit of weight loss that sets him on the right track. I think you would need to

to wait at least 2 weeks on the new cal level once he is well again to know for

sure if it has done anything, and if not, then perhaps try another 20-25 cals

lower. Surely that would then see some shift on the scales - it would have to??

We have been down at this 350 mg dep level before with , and he seemd to

do ok till we got to about 250-300. He didn't used to have daytime withdrawal

seizures on dep, but the night ones always increased, so we will be videotaping

him again from now on to make sure nothing is gonna sneak through this time....

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

From: michelle paulson

Hi -

That's the hypothesis - too many calories over time

results in stored glycogen which leads to a biggy

every so often. Coop hasn't lost any weight in 6 wks.

nor gotten any taller (although he hasn't gained any

either!). He is 37 lbs. and 37 in. ideal calorie

range is from 930-1000 (calculated by my dietician).

I thought I'd reduce by just 20 which happens to be

the number of calories we started the diet on over 1

year ago (we've come full circle).

was getting 250 cals. x4 meals per day - so

yes, he was getting plenty of cals. before bed. I

never did anything w/spacing OVER TIME but there have

been days that he'd eat his 4pm meal then fall asleep

and we'd wake him anywhere from 9-11 to feed him his

last meal and he'd STILL have a seizure from 4-6am.

That's why my first inclination was NOT to add a snack

during the day. He eats about every 4 hours. BUT...

do you think cutting calories by only 20 per day will

be enough to even make a difference? Should I go a

bit lower given his range?

The Dr. thinks has Mono. preliminary blood

work suggests it. He came down w/this bug Sunday

morning - woke up having jerk after jerk which we

hadn't seen in so long - I thought it was the

introduction of spinach I had been giving him the last

4 days that had somehow built up in his system (I'm on

a " build-up " bandwagon - hee hee) ended up having to

give him Diastat to stop them. Later that afternoon -

he had 104temp and I couldn't get the temp down for

some time w/the infant Tylenol. Stopped eating that

night and has only eaten about 5-6 bites of food since

then. He's in a true metabolic state of starvation.

He's absolutely miserable. Maintaining 102 temp

daily. Only one t/c that first day though - so am

holding my breath that we see no more throughout this

ordeal. He is drinking plenty of water - so at least

that. He sleeps basically all day except for when I'm

trying to pry food in his mouth. Maybe he'll drop a

pound or so when this is all said and done. UGHH....

I'm just PRAYING my other 3 don't get this!

Especially my 18 month old.

Sorry to hear that Jake is sick w/sinusitus. He's 4,

right? I'm sure he is miserable. If it's not one

kid, it's another!

On the flip side, that's AWESOME that you've gone 1

wk. w/no fall out. You're reducing every 2 wks.,

right? Wow, wow, wow! Have you ever gotten down to

this current dosage when weaning? If so, I'm assuming

you started to see w/d by now?

Best wishes for a healthy household - big hugs and

prayers to throughout your wean. Bet you can't

WAIT to get rid of Depakote!