Re: About to call it Quits!!!

[Guest guest]

Krista,

Sounds like you are doing the right thing. I wish you the best of luck. I

want to give you the web address of someone in Australia named Sutton,

he works with something called cell salts and has had a lot of success

treating kids with seizures and other neurological issues. His address is

http://www.biochemics.info/

You can correspond with him online even before you decide (if you decide) to

do an on line assessment.

I think he will be able to help you get 's health back on track, if

nothing else!

Good luck, and feel free to email me if you want more information (and the

website does have a lot of information)!

Sokulski

[Guest guest]

I can understand your frustration. We went through the same " keto hell " for

several

months. We kept on because we saw some improvements in seizures; i.e. less

frequent,

shorter and quicker recovery, we had higher lever of cognition and wanted to get

rid of

meds which were creating some problems with toxicity. Did you see any difference

during

the fast when you started the diet?

As a suggestion, I would concentrate on getting rid of the vomiting,

constipation and

crying (could be reflux or constipation or other), before worrying too much

about the

levels of ketones. That will come with fine tuning in the future.

I would move to lower the ratio say to 3.5:1 or 3:1, reduce meal sizes and give

more

frequently until you get the vomiting under control. You may only get BM's every

few

days while on the diet and this is definitely going to be more difficult with

the higher

ratio and less fibre. MOM at a higher dose should work every 4 or 5 days as a

backup or

you may have to use a suppository.

We had hair falling out too! That stopped when we switched to a vitamin and

mineral

supplement from Whole Life in California. We give it through a g-tube, but I

understand

that it can be hidden in cream. I also give 2 brazil nuts a day.

As you are discovering, some people have difficulty in getting the diet

established. Get

the big eating problems solved first. Worry about ketone levels later.

Bill

stormykrista wrote:

> I think we are about to call it quits for the diet. has been

> on it since 5/13/02 and it has bee pure hell. He creis majority of

> the time he is awake. (luckily he naps about 5 hours a day still)I'm

> getting thrown-up on every other day, some days 2x a day. HE only

> has BM's when we force on w/ baby lax (MOM isn't doing a thing). And

> the latest development is his hair is falling out. His hair on top

> his head is thinner than it was when he was born. Oh also his

> ketones are trace again and have been since Friday evening. He is on

> a 4.5:1 ratio already. We have yet to see any benifit to the diet.

> He was trying to sit and lay on his tummy supporting his upper body

> before the diet. That has gone away. He is still and cries if we

> make him bend at all. The only time he is relaxed is when he is

> asleep. I think it is time to move on.

>

> Krista

[Guest guest]

I'd agree with Bill that you need to try lowering the ratio and not worry about

ketones for the moment. It's worth a try to bring it down and see how he feels,

rather than out-and-out quitting the diet so soon..... it's only been just over

a month so there's lots of issues to get past in getting the body to accept the

diet and stop fighting ketosis. If he's crying all the time, he could be in pain

from acid reflux from such a high ratio..... or you could have issues with med

toxicity. You may need to lower his dosages because the diet changes the way

medications are metabolized. That could be getting in the way of ketosis and

seizure control. I hope you'll hang in there and let us help you through this

crisis before giving up altogether. First things first, though.... get that

ratio down.... if you do, he'll likely feel better right away.

Patti

About to call it Quits!!!

I think we are about to call it quits for the diet. has been

on it since 5/13/02 and it has bee pure hell. He creis majority of

the time he is awake. (luckily he naps about 5 hours a day still)I'm

getting thrown-up on every other day, some days 2x a day. HE only

has BM's when we force on w/ baby lax (MOM isn't doing a thing). And

the latest development is his hair is falling out. His hair on top

his head is thinner than it was when he was born. Oh also his

ketones are trace again and have been since Friday evening. He is on

a 4.5:1 ratio already. We have yet to see any benifit to the diet.

He was trying to sit and lay on his tummy supporting his upper body

before the diet. That has gone away. He is still and cries if we

make him bend at all. The only time he is relaxed is when he is

asleep. I think it is time to move on.

Krista

[Guest guest]

is on straight KetoCal, no solids. He is nearly 11 mths old.

They didn't have him fast due to his age. Ironicaly he had many of

these tummy issues when he was on breast milk. They all resolved

themselves when we moved him to Prosobee.

For 2 days wheile we were in the hospital for the diet he was drug

free and he was a different baby, but we had to put him back on the

drugs for now. We have had high ketones for a week at a time, but he

stays VERY congested on this formula (same reaction that I have to

dairy) and has had numerous ear infections. We have yet to see any

seizure improvement during those periods of high ketones. If

anything he is crankier, I got called to come and get him from day

care due to him crying for hours on end. They just put him back in

Prilosec last week. I believe it dropped the ketones, but it is

supposedly mixed so that the carbs are low enough that they don't

matter. No sweenter in it either. I tasted it. We have seen no

advantages to thei hell we are going through to warrant continuing

it. We are going to deliver an ultimatium to the docs today either

we get to try the soy version of the diet or we quit.

>

> > I think we are about to call it quits for the diet. has

been

> > on it since 5/13/02 and it has bee pure hell. He creis majority

of

> > the time he is awake. (luckily he naps about 5 hours a day still)

I'm

> > getting thrown-up on every other day, some days 2x a day. HE only

> > has BM's when we force on w/ baby lax (MOM isn't doing a thing).

And

> > the latest development is his hair is falling out. His hair on

top

> > his head is thinner than it was when he was born. Oh also his

> > ketones are trace again and have been since Friday evening. He

is on

> > a 4.5:1 ratio already. We have yet to see any benifit to the

diet.

> > He was trying to sit and lay on his tummy supporting his upper

body

> > before the diet. That has gone away. He is still and cries if we

> > make him bend at all. The only time he is relaxed is when he is

> > asleep. I think it is time to move on.

> >

> > Krista

[Guest guest]

Mike had quite a bit of trouble in the beginning too with throwing up,

diarrhea, then (and still) constipation issues. It took us 9 months

(5-6 of them not pretty) to get things working in our favor.

I still cant understand how the docs expect the child's whole metabolism

to change in 3 weeks?!? I can see 4-6 months a more realistic goal but

still some take longer.

Suppositories is what got me thru with Mike as well and psyllium husks

gave us great (altho quite messy) results.

Fiddling around with the magnesium seems to be the key for Mike with

psyllium added here and there - and I am still playing around with the

right amounts.

If you saw decrease in seizures or change for the better during the

fasting stage then I think that means the diet will give you some

results, might just take a bit with the fine tuning. We have had our 1

yr anniversary and are still not seizure free - altho doing much better

than even only 5 months ago.

I just read another of your posts - the formula he is on now, is it milk

based? Sounds to me like you are dealing with milk allergy (something I

am beginning to know quite a bit about as I have a 15 month old going

thru this right now - excessive mucous and tons of vomitting if he gets

milk - or even anything with milk as an ingredient)

Hope you can find the answers you are looking for. Please let us know

how things go with your neuro.

Jenn

stormykrista wrote:

> I think we are about to call it quits for the diet. has been

> on it since 5/13/02 and it has bee pure hell. He creis majority of

> the time he is awake. (luckily he naps about 5 hours a day still)I'm

> getting thrown-up on every other day, some days 2x a day. HE only

> has BM's when we force on w/ baby lax (MOM isn't doing a thing). And

> the latest development is his hair is falling out. His hair on top

> his head is thinner than it was when he was born. Oh also his

> ketones are trace again and have been since Friday evening. He is on

> a 4.5:1 ratio already. We have yet to see any benifit to the diet.

> He was trying to sit and lay on his tummy supporting his upper body

> before the diet. That has gone away. He is still and cries if we

> make him bend at all. The only time he is relaxed is when he is

> asleep. I think it is time to move on.

>

> Krista

>

>

>

[Guest guest]

Krista, I don't know anything about , most importantly his age, but I

have 10 1/2 month old twin boys (they don't have seizures, their sister does)

who have severe, systemic milk protein allergies. They both were badly

misdiagnosed, one had surgery (for reflux) and a G-tube for 6 months. The

other, sounds more like , constipated beyond belief, cried non-stop,

inconsolable, stiff as a board, vomited quite a bit. He was diagnosed with

reflux, which he had, but no one bothered to figure out why, which was

because he had the milk protein allergy (they were on Isomil, which is the

same thing as Prosobee. I don't know what's in Ketocal). Meds for reflux

were worthless. I can't imagine why the diet would stimulate an allergy, but

that may definately may be something you might want to look into. Be warned,

it does take a long time for symptoms to resolve - one of the twins was on

steroids for 3 months before the inflammation in his GI tract began to

resolve, the other, like I said had a G-tube for 6 months, and was on

Alimentum for 4-5 weeks before he was appreciably better. They are both

healthy kids otherwise. The one with the G-tube also got so dramatically

congested every time he had a bottle. Both are doing great now. Best of

luck with your decision, it's got to be so hard.

oh.......have you tried Miralax for the

constipation? Works great, keto-friendly, no taste, powder, it's

prescription, but the nurse at Hopkins recommended it.

[Guest guest]

travis will be a year on 7/30. He did great on Prosobee and after

today we are doing a 1 week wean at a 2:1 ratio and then back to the

Prosobee (yea!!!) While my husband was at the hospital w/ to

get some blood drawn (testing for Rett Syndrome) he stopped by the

neurology clinic and the doctor suggested taking him off it. And

made an appointment for him to be seen Thursday. I'm impressed w/

the impromptu appointment being made at their request not ours! I

love Texas Children's Hospital.

> Krista, I don't know anything about , most importantly his

age, but I

> have 10 1/2 month old twin boys (they don't have seizures, their

sister does)

> who have severe, systemic milk protein allergies. They both were

badly

> misdiagnosed, one had surgery (for reflux) and a G-tube for 6

months. The

> other, sounds more like , constipated beyond belief, cried

non-stop,

> inconsolable, stiff as a board, vomited quite a bit. He was

diagnosed with

> reflux, which he had, but no one bothered to figure out why, which

was

> because he had the milk protein allergy (they were on Isomil, which

is the

> same thing as Prosobee. I don't know what's in Ketocal). Meds for

reflux

> were worthless. I can't imagine why the diet would stimulate an

allergy, but

> that may definately may be something you might want to look into.

Be warned,

> it does take a long time for symptoms to resolve - one of the twins

was on

> steroids for 3 months before the inflammation in his GI tract began

to

> resolve, the other, like I said had a G-tube for 6 months, and was

on

> Alimentum for 4-5 weeks before he was appreciably better. They are

both

> healthy kids otherwise. The one with the G-tube also got so

dramatically

> congested every time he had a bottle. Both are doing great now.

Best of

> luck with your decision, it's got to be so

hard.

>

> oh.......have you tried

Miralax for the

> constipation? Works great, keto-friendly, no taste, powder, it's

> prescription, but the nurse at Hopkins recommended it.

>

>

>

[Guest guest]

i to understand your frustration. my daughter isabela is on the ketocal

version of the diet. she is almost 2. it has been a long hard road for us

to. we were initially on the RCF version of the diet. this is the soy

version. this didnt agree with her as well as the ketocal does now. we had

the hair thinning, i dont blame it on the diet i think it was her lack of

nutrition before the g-tube, and too high of ketone levels initially. she

had terrible reflux too. zantac took care of this until the g-tube and then

we got the nisson. we have done the keto diet since 11/01. we had great

seizure results initially and then we had alot of fine tuning to do and now

she is in the weight and height 50% and that is where she was before

g-tube/diet. we arent seizure free but it is helping. i also contributed

alot of her hair thinning to meds.

with the RCF version it is easy and is soy based. maybe that would be better

for travis, it is really no big deal to switch. we tried the ketocal version

and stuck with it when her ketones were more stable and it definatley agreed

with her. the RCF does require more vitamin suppliments and carbo additives

but if it helps stablize things that would be so good for travis. isabela

had to use prosobee also after i breast feed for 9 months, the regular

formulas gave her projectile vomiting. she is on a 4.38 ratio and doing

well.

we give isabela suppositories every day/every other day due to her weakness

since increased seizures. this has been since we had the g-tube and

increased meds. she has so many special needs between

diet/meds/VNS/potty/etc.

is travis on any meds now?

tasha mom to isabela 23 months

>

>Reply-To: ketogenic

>To: ketogenic

>Subject: Re: About to call it Quits!!!

>Date: Mon, 24 Jun 2002 17:06:53 -0000

>

> is on straight KetoCal, no solids. He is nearly 11 mths old.

>

>They didn't have him fast due to his age. Ironicaly he had many of

>these tummy issues when he was on breast milk. They all resolved

>themselves when we moved him to Prosobee.

>

>For 2 days wheile we were in the hospital for the diet he was drug

>free and he was a different baby, but we had to put him back on the

>drugs for now. We have had high ketones for a week at a time, but he

>stays VERY congested on this formula (same reaction that I have to

>dairy) and has had numerous ear infections. We have yet to see any

>seizure improvement during those periods of high ketones. If

>anything he is crankier, I got called to come and get him from day

>care due to him crying for hours on end. They just put him back in

>Prilosec last week. I believe it dropped the ketones, but it is

>supposedly mixed so that the carbs are low enough that they don't

>matter. No sweenter in it either. I tasted it. We have seen no

>advantages to thei hell we are going through to warrant continuing

>it. We are going to deliver an ultimatium to the docs today either

>we get to try the soy version of the diet or we quit.

>

>

> >

> > > I think we are about to call it quits for the diet. has

>been

> > > on it since 5/13/02 and it has bee pure hell. He creis majority

>of

> > > the time he is awake. (luckily he naps about 5 hours a day still)

>I'm

> > > getting thrown-up on every other day, some days 2x a day. HE only

> > > has BM's when we force on w/ baby lax (MOM isn't doing a thing).

>And

> > > the latest development is his hair is falling out. His hair on

>top

> > > his head is thinner than it was when he was born. Oh also his

> > > ketones are trace again and have been since Friday evening. He

>is on

> > > a 4.5:1 ratio already. We have yet to see any benifit to the

>diet.

> > > He was trying to sit and lay on his tummy supporting his upper

>body

> > > before the diet. That has gone away. He is still and cries if we

> > > make him bend at all. The only time he is relaxed is when he is

> > > asleep. I think it is time to move on.

> > >

> > > Krista

>

Tasha

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[Guest guest]

Wow -- can't say that I blame you. . .it's sure a

mystery how he could be at a 4.5:1 ratio and have

trace ketones. Ordinarily, I'd say that that ratio is

way too high and that's why you're having the problems

you're having -- would still say that was true. Are

you sure the ketone reading is accurate? He just

sounds so ketotic.

Is he on any meds? I know Depakote is notorious for

hair falling out. The med/diet interaction is very

tricky and each can raise the bad effects of the

other.

Totally understand where you're at right now. . .but

if you'd like to post some stats or other info,

perhaps someone can unearth something that can help.

Have you looked at the trouble-shooting guide in the

files? What does your neuro/dietician say? I must

say that I'd be a bit suspect about their experience

with the diet if they've got you on that high a ratio.

Just my two cents. . .good luck with your decision.--D

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