Re: decline on diet-

[Guest guest]

The carnitine issue is the only common denominator I can think of here re

regression/hypotonia etc and lack of growth on the diet - have you had

his levels re-tested since you started supplementing? Maybe he has been

deficient all along, and still needs more?

Otherwise a metabolic issue like a fatty oxidation disorder or something, but

I'm pretty sure you would have seen his seizures worsen not improve (as they

eventually have with ) on keto. Same goes I guess for carnitine issues

though, like usually any other problems would go hand in hand with either no

improvement in, or an increase in seizures?

Complete lack of height growth is not normal on the diet no - slowed yes, but

none at all in a yr would usually send warning bells that all is not right.

Has he been seen by an endrocinologist or metabolic specialist since he

started keto? These would be the 2 areas I would zoom in on and ask for help

from before making a firm decision about weaning the diet.

And yes, I too am itching to know how would be off the diet right now -

does he still need it, is he controlled by meds instead now, has he maybe

outgrown his syndrome - which is it helping his seizures - dunno.

We never saw any physical or developmental regression from keto though, any of

that was as a direct result of meds and/or toxicity, so at this point I am

leaving it as is.

We haven't had to go down the weaning/whole milk path yet, so can't help with

that one, but when and if the time comes I'll be asking on here too

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

From: michelle paulson

Hi gang-

For whatever reason, I've been questioning the

efficacy of the diet lately and wonder how much

is benefiting. I'm sure some of you may wonder from

time to time how your children may respond " off " the

diet if their seizures are somewhat controlled or 100%

controlled. I guess now I'm having some doubts

whether fully adjusting to running on ketones

vs. glucose.

I just can't forget how not only regressed

cognitively but physically after starting this diet.

I don't believe in coincidence at all and just thing

it's plum strange how one wk. after being on keto, he

turned into a dif. kid. At first, he had huge

coordination issues and lots more seizure activity.

Then he started to lose words, regress cognitively,

then the hypotonia started in.

's growth has also been affected. He hasn't

grown (taller) in one year and has remained the same

shoe size for one year. Is this normal?

In addition, it seems I've recognized a trend w/him

coming down w/illnesses every two wks. which bring on

a seizure at the onset of the illness. Granted, we

have 4 children so we are probably germ infested but

this also doesn't seem normal.

's been on the diet for 1.5 years (started the

diet at the age of 1.5).

I guess I'm wondering if any of you can think of

anything metabolically that could be going on that

might have been unmasked by the diet.

Hmmm.... or is it possible for the brain to just

resist ketones?? I have read that though the brain

naturally prefers glucose, it can adapt to ketones.

Yes, I know that but something tells me this diet

might have brought on whatever the underlying cause

for the seizures are.

I read in Freeman's book that if you are a parent who

wonders how their child will do off the diet - to give

them whole milk in place of the cream for 2 wks. which

lowers the ratio to 3:1. If they tolerate it, wait

two more wks. then give skim milk in place of the

whole milk. Has anyone ever tried this?

Well, thanks for listening - I just can't seem to

shake the feeling that has really declined

while being on the diet. The good news is, his

seizures are down to one every two wks. or so (and

occur between 4-6am) and the diet has allowed us to

get off of medication. Do these declines seem normal?

Thanks! (mom to )

__________________________________________________

[Guest guest]

Was the actual total to free ratio checked as well though? Didn't you think he

had improved motor wise etc when did you did start supplementing?

Will be interested to see what his bloods show tomorrow, and yes, GI team def

a good idea - checking for malabsorption etc? Has he had a fecal fat test done

yet? If that comes back as abnormal, meaning he may not have been 'absorbing'

all the caloric fat content part from his diet, his fat soluble vitmain levels

could also be suffering - A D E and K, Or are those showing as in an ok range?

I am past the wondering about the diet stage, def closer to the itching to

wean part I guess Christmas coming is making me feel a bit more like that,

but stifling it for now...

Dep wean is going well here, but v slowly, lots of reductions to go yet, only

doing 25 mgs a week at the mo, and we still have another 250 mgs to go - so

doing the math Feb still before we can change anything else. Assuming he goes

ok with the rest of it of course.

School is going ok too, but I have requested that he could repeat his last

school yr, as most of the past 11 mths has been spent catching up on the prev 2

yrs he missed so much of. They eventually agreed, (not usually done here, but

they made an exception) so next yr will hopefully see him closer to the level of

the other kids in his class. He got his report yest, which was understandably on

the low side comparing him to other kids in his class, but the effort part saw A

s and B's - with a comment that tremendous academic progress has made in 2004.

So happy with that - more than happy

6 week long Christmas Summer vacation starts here on Thurs, um - not really

looking forward to it with 3 of 'em to keep busy, but I'm sure we'll make it

thru

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

From: michelle paulson

Hi -

Nope - not the Carnitor - in fact - just had it

checked - he was at 116 which is just slightly

" elevated " . Metabolic specialist said not to worry if

he's not having diarrhea.

I've wondered about fatty oxidation - will have to see

an endocrinologist for that one or some GI team which

is my next team of Dr.s to visit. Already working on

that one.

I'm not " itching " to wean the diet - just recently

have been " wondering " but won't get ahead of myself.

That will take time and a lot of planning.

Obsessed w/vitamins/minerals - have a gut feeling on

this one - it's just finding the right Dr.s to help.

Have a call in to my nutrionist.

OH.... forgot to mention the latest w/him in my other

messages.

5 days ago, stopped eating. He has been super

lethargic and just wants to sleep all day. First

thought tummy bug or ear infection. Well... 5 days

later - ruled out tummy bug - no diarrhea or vomiting.

Went to the Dr. today and ruled out every obvious

virus - clear everything. Ped. wondered if he's ill

due to the " disease progression " like it's rearing

it's ugly head in the form of lethargy and refusal to

eat. Thought about this - b/c I haven't been able to

get ANY vitamins in him for 5 days. Spits them right

out. Ketones are crazy all over the place. SOMETHING

is going on w/him and I have to figure it out. His

little body is like " mush " . Will fast him tomorrow

morning and am going to have a lipid profile test,

CBC, B12, and folate checked. It's a starting point.

Figure something is out of whack for sure.

I'll keep you posted!

How's that wean coming along? How's doing

these days? School? Anything new/exciting?

HUGS and many thanks!

[Guest guest]

Our neuro always specifies it , he puts 'carnitine profile including

free and total' on the lab form. So yep, I think this still needs doing with

, at least to completely cross it off the list, as the levels taken on

their own are really not that useful at all

K, so fecal fat is ok, so was 's which was a relief. I can remember

thinking back when he was tested, okaaaaaay I have a kid on a mainly fat content

diet, have had for over 2 yrs with the possibility that he can't properly

metabolise the damn stufff....

Congrats on that normal EEG - that is wonderful! I know it is frustrating when

all these things come back as normal, but cripes - an EEG being normal is one

thing we do like to hear

Has he had a sleep one done recently too? That is what Jill was referring to I

think with the ESIS - stands for electrical status in sleep, also known as CSWS

(?) continual spike and wave in sleep. If he was having this, it might explain

him not being a good state during the day afterwards, but the fact his awake one

was perfectly normal would have to be encouraging I think - like there was no

abnormal background indicating a lot of post-ictal slowing?

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

From: michelle paulson

No - total to free ratio was not checked - having

blood drawn tomorrow so will ask the tech. if the Dr.

has to specify testing to include total and free

ratio. The number (116) I got was one solid number.

Ugh... something else to argue about.

Recently had a fecal fat test done - came back normal.

Also JUST had an awake EEG done - NORMAL. Luckily,

everything we've EVER had tested has come back normal

- and not that I'd ever wish for anything but NORMAL -

it's still so frustrating. I think all of his tests

have made Dr.s lazy w/searching for the answers. So

many just want to treat symptoms. That's why I'm so

angry. Clearly, something is going on. Haven't had

his fat soluble vit. checked in about a year but they,

too, came back w/in normal limits after having been

on the diet. The only thing we haven't tested for are

the B vitamins, folate, and micronutrients and that's

where I'm headed now. One day at a time.

I laughed when I read that you are past the wondering

stage. I bet you are leaning toward " itching " . Don't

blame you one bit. has come so far in one

year's time - he's an inspiration for all of us.

But... might he even be " better " if he were on a

regular diet. W/all the credit I give this diet for

enabling our children to become med free and for

improving the quality of life for many - it still has

it's disadvantages which are plentiful. Especially

for the older kids who would love to share a big

pepperoni pizza w/friends. Well... February's not

that far off given the big scheme of things - You

start weaning the diet after he's over the elimination

of med hump and in 3-6 months time - he'll be home

free. WOW!!!

How exciting that is doing so well in school.

Even if he has to repeat the year - it sounds like

he's making bigger strides. The fact that he's making

up 2 years in 11 months is HUGE. And it sounds like

he's more or less functioning at age level. I can't

hardly believe this given his history. WOWZERS!

Again, inspirational. I love success stories. He's

got to feel so good about himself - I'm sure you've

seen changes in his self confidence/esteem w/the

success that he's experienced. I'm sure you will even

see more once the Depakote is out of his system. Life

is good and I'm so pleased/excited for you. I'm sure

his interactions/relations w/his siblings has also

strengthened - I'm sure you and are loving

that!

6 wks. of vacation, eh, 3 at home - boy will your life

change. At least it's warm there - kids can play

outside. Wishing that were the case here. Just

recently have had to start wearing winter coats here

in NY and can't say I'm looking forward to getting

those boots out. We're actually headed for the

midwest for 2 wks. for Christmas vacation on Saturday.

Hoping to get stabilized by then. It's a 16

hour car trip so not fun to look forward to.

Always glad to hear 's doing great w/his wean.

He deserves to enjoy life as a kid.

HUGS!