Re: I need advice please

August 5, 2004

Hi, Bobbi,

I don't have much for you in terms of advice on what to do. I just thought I

would share that my daughter also has osteoporosis and urinary stasis from

calcium build up in her kidneys. She didn't get it from the diet, but was on

high dose sterroids (ACTH) for infantile spasms and had all sorts of

complications.

Is your son on calcium carbonate? If so, you might have better luck if you try

calcium citrate. Some people don't have enough stomach acid to properly

absorb calcium carbonate (and even those who do should always take

calcium carbonate after meals, when stomach acid is at its highest). Also,

calcium should be taken in smaller doses throughout the day, as opposed to

in one large dose, for best absorbtion. And, finally, you need magnesium and

vitamin D in proper ratios in order to absorb calcium. Kirkman Labs makes a

product with Calcium chelate, which they claim is the best absorbed form (see

http://www.kirkmanlabs.com/products/minerals/calcium/

Calcium_C_120_Spec130.html)

Depakote also has been shown to deplete calcium and vitamin D (among

other vitamins and minerals) , so your son might need extra of both (see http://

www.truestarhealth.com/Notes/1535009.html).

In our daughter's case, I really beleive that her Depakote was interfering with

her ketogenic diet. After getting some advice from parents on the board, we

changed her medication and started weaning the depakote. The very next

day, she had large ketones for the first time in the four weeks she was on the

diet. She was also seizure free (still not sure how much was the new med

and how much was the diet).

If you think that the diet may be better at controlling the seizures than the

depakote, you might ask about trying a new medicine and weaning him off

that before you give up the diet. After all, it's easier to go back to using

Depakote, if you have to, than it is to go off the diet and then start it back

up

again.

Sorry to write you such a book! I'm not sure if anything I wrote is helpful,

but if

you have any questions, or just need someone to listen, please feel free to

email me at moyer305@....

(mom to Daphne -- 9 months old, dx with Infantile Spasms at 3 months)

> Hi,

> I haven't posted in a long time. My son has been on the diet for 2

> 1/2 years today. He is having trouble with his kidney's now. He

> already has osteoporosis due to not absorbing the calcium

> supplements. I am starting to worry that I'm harming him by keeping

> him on the diet. He is 5 years old. He is still having 6-8 seizures

> a week give or take. Still much better than pre-diet. He has

> remained on depakote and we have had to increase 2 times in the last

> 6 weeks. I am so scared to stop the diet but also scared of how much

> more his little body can take. He is mostly non verbal so he can't

> tell me what he wants. He understands though, that's the hard part.

> I am so depressed and worried about him. I feel like I'm stuck

> between a rock and a hard place. Any advice would be welcome. I just

> want what's best for my little boy.

> Thanks,

> Bobbi

August 5, 2004

A couple of thoughts......the problem with calcium, osteo and kidneys

and the diet is generally not calcium absorption but the fact that the

acidity of the diet causes the calcium to be sucked back out of the

bones. And then because there is too much calcium in the blood it gets

peed out. A 24 hr urine will confirm if that is what is going on. That

being said you do want the most absorpable form of calcium available,

along with sufficient magnesium (they should be getting at least half as

much mag as calcium), Vit D and the necessary trace minerals (selenium,

zinc) to help with absorption.

Also Depakote is another culprit for causing osteoporosis. You hear

about the calcium problem with the diet but they rarely tell you about

it with the drugs. But they have studied depakote and tegretol was the

other one I believe that was bad.

Anyway, keto diet and depakote will be a double whammy for calcium

problems, if you can get rid of depakote, I would advise it. Have you

tried diet drug-free? The dep can sometimes work against the diet and

you don't get good seizure control until its gone.

, 's mom

wrote:

> Hi, Bobbi,

>

> I don't have much for you in terms of advice on what to do. I just

> thought I

> would share that my daughter also has osteoporosis and urinary stasis

> from

> calcium build up in her kidneys. She didn't get it from the diet,

> but was on

> high dose sterroids (ACTH) for infantile spasms and had all sorts of

> complications.

>

> Is your son on calcium carbonate? If so, you might have better luck

> if you try

> calcium citrate. Some people don't have enough stomach acid to

> properly

> absorb calcium carbonate (and even those who do should always take

> calcium carbonate after meals, when stomach acid is at its highest).

> Also,

> calcium should be taken in smaller doses throughout the day, as

> opposed to

> in one large dose, for best absorbtion. And, finally, you need

> magnesium and

> vitamin D in proper ratios in order to absorb calcium. Kirkman Labs

> makes a

> product with Calcium chelate, which they claim is the best absorbed

> form (see

> http://www.kirkmanlabs.com/products/minerals/calcium/

> Calcium_C_120_Spec130.html)

>

> Depakote also has been shown to deplete calcium and vitamin D (among

> other vitamins and minerals) , so your son might need extra of both

> (see http://

> www.truestarhealth.com/Notes/1535009.html).

>

> In our daughter's case, I really beleive that her Depakote was

> interfering with

> her ketogenic diet. After getting some advice from parents on the

> board, we

> changed her medication and started weaning the depakote. The very

> next

> day, she had large ketones for the first time in the four weeks she

> was on the

> diet. She was also seizure free (still not sure how much was the new

> med

> and how much was the diet).

>

> If you think that the diet may be better at controlling the seizures

> than the

> depakote, you might ask about trying a new medicine and weaning him

> off

> that before you give up the diet. After all, it's easier to go back

> to using

> Depakote, if you have to, than it is to go off the diet and then start

> it back up

> again.

>

> Sorry to write you such a book! I'm not sure if anything I wrote is

> helpful, but if

> you have any questions, or just need someone to listen, please feel

> free to

> email me at moyer305@....

>

> (mom to Daphne -- 9 months old, dx with Infantile Spasms at 3

> months)

>

> > Hi,

> > I haven't posted in a long time. My son has been on the diet for 2

> > 1/2 years today. He is having trouble with his kidney's now. He

> > already has osteoporosis due to not absorbing the calcium

> > supplements. I am starting to worry that I'm harming him by keeping

> > him on the diet. He is 5 years old. He is still having 6-8

> seizures

> > a week give or take. Still much better than pre-diet. He has

> > remained on depakote and we have had to increase 2 times in the last

>

> > 6 weeks. I am so scared to stop the diet but also scared of how

> much

> > more his little body can take. He is mostly non verbal so he can't

> > tell me what he wants. He understands though, that's the hard part.

>

> > I am so depressed and worried about him. I feel like I'm stuck

> > between a rock and a hard place. Any advice would be welcome. I

> just

> > want what's best for my little boy.

> > Thanks,

> > Bobbi

>

> " 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

>

August 6, 2004

My son Keenan has been on the diet for four months and this issue worried me as

I regularly talk with a well known nutritionist who is very natural in her

approach to supplements. She was worried that with such high supplementation of

cal/mag/zinc, that the kidneys would suffer and the body would not absorb as

much as was needed. She suggested a wholefood supplement (Barleylife by Aim)

which has a fair dose of calcium and magnesium, she said that it is much easier

for the body to use and absorb as it is a natural wholefood with a more

realistic proportion of calcium to magnesium. She also suggested that I give

keenan a natural course of probiotics (infantflora by Schipharm) to maximise

absorbtion. He is looking and doing so well. We are in the process of weaning

depakote and since I have made this change (5 weeks now) he has not had any

seizures and his hair and colouring look so healthy.

What ratio is he on ? maybe you could reduce it a bit without having to come off

the diet ?

Have you read Isabel Walcutt's - neurodiet site - Her daughter has been on a

modified version of the keto diet for many years - she is also very conscious of

health issues !

I hope that you find a good alternative to this problem.

Michele - mom to Keenan ( 28 months ) Started keto 19/4/04, seizure free since

the start of the diet except for a few days when weaning depakote.

I need advice please

Hi,

I haven't posted in a long time. My son has been on the diet for 2

1/2 years today. He is having trouble with his kidney's now. He

already has osteoporosis due to not absorbing the calcium

supplements. I am starting to worry that I'm harming him by keeping

him on the diet. He is 5 years old. He is still having 6-8 seizures

a week give or take. Still much better than pre-diet. He has

remained on depakote and we have had to increase 2 times in the last

6 weeks. I am so scared to stop the diet but also scared of how much

more his little body can take. He is mostly non verbal so he can't

tell me what he wants. He understands though, that's the hard part.

I am so depressed and worried about him. I feel like I'm stuck

between a rock and a hard place. Any advice would be welcome. I just

want what's best for my little boy.

Thanks,

Bobbi

" 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

August 6, 2004

Bobbi,

You've been at this longer than I, so I'm not sure I should be giving

advice but here's my thoughts for whatever they're worth.

Both the Depakote and the diet can be hard on kidneys. It's hard to

say if it is one or the other or both that might be the culprit for

your son. It would be my guess that if it's one or the other, the

Depakote is doing more harm than the diet. Has he any kidney

function tests done? What is your medical team saying about this?

My daughter was on Depakote alone and in combination with several

other drugs for about 10 months. In hindsight, we know that it

didn't help her seizure activity much. It caused lots of other

issues, but for us, kidneys weren't affected. When we first met with

our keto team, they said they wanted to drop the Dep. when we

initiated the diet. We had talked to other keto teams that wanted to

wait to wean meds until seizures decreased significantly or stopped.

OUR team said that often doesn't happen. Our daughter has been

seizure free since initiating the diet a year ago. I really believe

that stopping the Depakote made a huge difference for her.

I would talk with your medical team about weaning the Depakote and

giving the diet a chance to work alone. It may be that you have

reached the point where the two cannot be on board at the same time.

2 1/2 years of both is a long time. It's likely that you will see

withdrawal seizures if you do decide to wean... but, maybe not. I

think it would be worth it to see if the diet can control seizures on

its own. If not, then you know for sure that the diet's ability to

work wasn't being messed up by Depakote. It seems that the diet is

doing something since his seizures are better now than pre-diet. You

will probably have to do some adjusting of the diet as he comes off

Depakote. If you were to do the diet alone for a while without

success, you could add back a more " keto friendly " med in a small

amount and see if that would help. If that didn't help, and you

decided to stop the diet you would know that you had given it a good

try.

Is he taking a chelated or highly absorbable form of calcium? I'm

assuming you are supplementing adequate magnesium and phosporus (but

not too much of this) and all of the trace minerals. Is he having

problems with acidosis at all? Some kids get too acidic on the diet

and that can be very hard kidneys, too.

I wish you well in your decision making.

> Hi,

> I haven't posted in a long time. My son has been on the diet for 2

> 1/2 years today. He is having trouble with his kidney's now. He

> already has osteoporosis due to not absorbing the calcium

> supplements. I am starting to worry that I'm harming him by keeping

> him on the diet. He is 5 years old. He is still having 6-8

seizures

> a week give or take. Still much better than pre-diet. He has

> remained on depakote and we have had to increase 2 times in the

last

> 6 weeks. I am so scared to stop the diet but also scared of how

much

> more his little body can take. He is mostly non verbal so he can't

> tell me what he wants. He understands though, that's the hard

part.

> I am so depressed and worried about him. I feel like I'm stuck

> between a rock and a hard place. Any advice would be welcome. I

just

> want what's best for my little boy.

> Thanks,

> Bobbi

August 10, 2004

The poor absorption of calcium may be aggravated by the depakote. I

don't know. Others here may have some information. Often these side

effects are not known or minimized. There isn't much knowledge about

medications combined with the diet. Except here, of course!

Osteoporosis is a known side effect of using AED's. I don't know which

ones, but I certainly saw that on a poster in the doctor's office.

Perhaps try to wean off the depakote completely. You may have to ride

out withdrawal seizures for some time and I know that can be gut-wrenching.

I believe that you need extra magnesium with the diet and to absorb

calcium you need a good source of calcium(easily absorbed. I think that

the cal-mag-zinc from Wholelife has tricalcium phosphate, calcium

gluconate, calcium lactate and calcium carbonate) and vitamin D. I would

spread out

the vitamin/mineral supplement over the day to aid in absorption. I

would cut out any additives or sweeteners as well.

We didn't use depakote but others have said that it doesn't mix well

with the diet.

Bill

ojotreelo wrote: