/ - Carnitor dilemma

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Hi , below somewhere in ****s

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

From: michelle paulson

>Bet it feels strange being able to sleep thru the

night w/out waking for meds.

**Nowhwere near there yet, so pass The midnight dose is what we are

targeting first, but it was a 175 mg dose that we are chipping away at, so ask

me again in a few weeks/months time....

>It's a good sign that you are at day 5 w/no seizure activity. It was

typically days 2-3, 7, and 10 for us (about) while

weaning.

**Been taking a wander down memory/nightmare lane by reading back about how

he fared during the last depakote weans in 2002 and 2003. Not as definte a

pattern as we used to see with say lamictal or benzo reductions, but his fallout

duration was usually roughly between day 3-12, usually day 3-5 is where we

started seeing night nasties.

Day 7 today with still nothing seizure wise, and that was pretty rare in the

past to get that far unscathed, so a good sign But then again, he is still

above a level (450 mgs a day now) where I wouldn't expect to see much anyway in

that dept. When he was on this med with the benzos, he used to seize if we

didn't have him below a certain level, so a bit of a different scenario this

time round, unchartered territory I guess you'd say. Hate that....

>He's gone nearly a year now seizure free so

keeping my fingers crossed that his brain " forgot " how

to seize. It will be interesting to see what you have

to do w/the Topamax to compensate for the

Dep.reductions and if tweaking the diet will be

necessary.

**No change whatsoever so far in either topomax or diet effects, but early

days of the wean yet I spose. Bit of a dilemma coming up, as we are heading off

for a week's holiday in 10 days time. Do I tweak again tonight and get another

reduction out the way before we go, or do I wait till after we get back on the

20th. Waiting till his midnight dose tonight to decide, lol, nothing like a

decision on the spur of the moment. Hoping my gut will kick in when the time

comes

>Carnitor. Hmmmm.... Increased Carnitor to 990mg. 7

days ago. came down w/a cold virus 5 days ago

and for the next four nights (or early mornings, I

should say) he's had a seizure each night. Funny

thing is, he had 2 partials - which I haven't seen in

a good 3 months. Don't know if I should blame it on

the increased Carnitor or the illness. TYPICALLY when

gets sick, we only see one seizure right before

he comes down with the virus. He hasn't slept well at

all so I somewhat chalked the seizures up to sleep

deprivation.

**Well that has muddied the waters a bit hasn't it

An illness coinciding with the increase means you really have no way of

knowing, cos I know what you mean by typically - doesn't mean that 'this' time

he hasn't responded adversely during the illness, too hard to separate the 2.

>Now, in addition, he has gained another

lb. he is now up to 37 lbs. (over the 95% for wt.)

and is only 36 inches tall (25% for ht.)

***So he has done the opp of what most find, that carnitine addition usually

causes weight loss. Um....

But - weight loss/gain can take up to a month to be seen on the scales, so

that might still be a reflection of the cal metabolism etc before the carnitine

got to a theraputic level mebbe?

>We just had him weighed and got a truly accurate ht. measurement

which is actually one inch shorter than we thought.

We had an apt. today w/a new keto team and the neuro.

wasn't sure about the Carnitor causing the increased

seizures or the weight gain. And, get this, I was

just telling him that we haven't seen a myoclonic jerk

since eliminating his cream and, low and behold,

had a jerk in his office.

**Oh God, I HATE that. Hate the fact a seizure appeared in the first place

of course, but even worse after telling a new Doc about something that does an

about face on you then and there. Empathy, sympathy, you have it from here, been

there

>I'm sure the Dr. thought I was dilusional (he has had 3 now today)

UGH... But.... my gut tells me the increased seizure

activity might be due to him metabolizing the fat

differently w/the addition of the carnitor. He has

definitely gained weight since starting the

supplement. Plus, he is a bundle of energy. In fact,

a bit on the hyper side which I'm concerned about.

Definitely noticing improvements w/all around

development. Even starting to say some words. So, am

not ready to reduce the Carnitor just yet but am going

to sit tight at the current dosage.

**Yeah, I think you will have to sit tight - you are seeing some definite

benefits all round, and thinking about the weight issue again - what 'sort' of

weight is/was being gained could be a confusing issue - like if he was

previously abnormally storing fat because it wasn't metabolising properly, then

he would have been short on cals that were able to be effectively used, so poss

he was previously using some muscle tissue probably to top up fuel/energy

requirements. If all cals are now 'going to' where they need to, then you may be

seeing a true indication of how he is weight wise on that level. Like - no

muscle mass being lost (and muscle weighs heavier than fat) , have you seen any

glucose clues to say this could be the case, as in previously highish glucose on

waking, now down in a good keto range? Cripes - did that make sense?

>3 days ago, I reduced his calories by 50 and cut his

protein by 2g./day. My " new " dietician wants to cut

more calories and increase his ratio. At first she

said to 4:1 then said she's think about a 3.5:1. I

truly don't know what to do.

**Changing a ratio and another calorie drop that soon after already recently

altering them, with an illness and a recent carnitine increase - would be

overload in the changes dept I think.

>I asked her if the jerk(s) could be related to the decreased calories but

she said " no way " . The only other thing was that when

we first saw the jerks disapear - it was after

" increasing " calories - thus I thought he was on too

few calories and needed the extra for better control.

So, I guess I have a few questions for you. I'd

really like your opinion. Should I reduce the

Carnitor? Or, reduce the calories and increase the

ratio like the dietician wants to do? I'm leaning

toward keeping the carnitor since I'm seeing lots of

fun new things, developmentally and I'm OK reducing

calories, I guess, but am really scared to increase

ratio.

**You may have to end up going in both directions, but I don't think I would

do any of them right now. A 50 cal change is going to take a week or 2, maybe

longer, to reflect weight wise, and if that 50 cal decrease starts him burning

thru some excess body fat, his ketones will start climbing, meaning doing a

ratio increase now might just have to be reversed anyways. If the aim is to get

him to lose some weight, and get some height growth going, then carnitine

starting to take effect might help that process. And kiddies often gain weight

then 'grow into it' height wise, so he may well now use some of that excess

weight for that process? So you wouldn't want to leave him tooooo short cal

wise?

Have to say though, 's reaction to carnitine happened pretty quickly

in the weight and ketone dept, but then he was in hindsight prob short on cals

when it was introduced, whereas isn't.

PS - guess I should also say that I haven't noticed a

difference w/blood ketones. Have only checked them 2

days since this recent increase in Carnitor and they

are around 2.0 in the am and 5.4 before bed.

**Like I said above, we def had seen a big diff in ketones by the stage you

are at now, so maybe, just maybe, he actually needs to go up further still on

the carnitor, to a point where burning excess body fat and producing higher

ketones all round results. Not that you want that evening bhb to go much further

upwards...

But by lowering cals you may have already started that ball rolling, and

increasing carn at this point might lead to overkill. It probably isn't very

helpful, but my advice is to make one small change at a time, and as you have

already done one cal decrease, with the rule of thumb being wait one to two

weeks in between each change, I am not sure I would do another cal decrease so

soon afterwards. What meal did you take the 50 cals off? Or was it from across

the whole day?

That 2.0 is still a pretty low waking ketone reading, is he eating a fairly

substantial meal right before bed at night? Like are you pretty sure you have

the meal spacing set where he needs to be? Not that any of us ever know right

where that is of course - I wish...but I do know that seems to need a

largish meal right before going to sleep to carry him thru till the morn. I know

he is on more cals than , and is a lot older/heavier, but his last meal of

the day is 300 cals, which isn't a lot different to all his others. Just seems

that it is a v big variation between the 2.0 and 5.4, perhaps a spacing change

rather than a total cal change might be the next move instead?

Thanks, - and anyone else reading this is more

than welcome to add their 2 cents. All opinions are

greatly appreciated.

Continue to keep us updated on 's wean.

(mom to - 2.5yrs. old - ketokid since

6/03 - med free since 3/27/04)

**