Re: Re: I need advice please/OSTEOPOROSIS

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Another is Epanutin (Phenytoin). My son had been on all the three

Aeds mentioned and about 8 others. Then while on the diet he

was diagnosed with osteoporosis. From about three years before

the diet he had been complainning of upper backache on and off.

However it wasn't taken seriously by his dr.s. Once they referred

him for physiotherapy but never thought of investigating further.

Saro....Rohan's mum

mmc@... wrote:

>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

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