Re: More regarding Body Bio

[Guest guest]

>I guess I just don't see how my son's pediatrician would be able to interpret

>the results of a 20 page

>report (nor would she want to), and tell me what it means in terms of

supplements,

>diet, etc.

,

A friend of mine who is an MD, but not one our docs has an autistic child.

She did some type of bloodwork that was supposed to tell her what foods to

avoid and what supplements to take, etc., all based on his chemistry. She

even got a few extra kits for the labs and told me I was welcome to them if I

wanted to try on my family.

I am into a lot of alternative things, enough to know to be cautious, so I

waited until she had Zachs labs back. She was not impressed nor did she find

the information useful. Perhaps what you are into is far better, but she

felt the Ph.D. misled her on some things and she didn't get NEAR the info she

was expecting.

She has however found some things that help, though not through that

particular avenue.

I'm not trying to discourage anyone, just merely food for thought.

Cheri

[Guest guest]

>I guess I just don't see how my son's pediatrician would be able to interpret

>the results of a 20 page

>report (nor would she want to), and tell me what it means in terms of

supplements,

>diet, etc.

,

A friend of mine who is an MD, but not one our docs has an autistic child.

She did some type of bloodwork that was supposed to tell her what foods to

avoid and what supplements to take, etc., all based on his chemistry. She

even got a few extra kits for the labs and told me I was welcome to them if I

wanted to try on my family.

I am into a lot of alternative things, enough to know to be cautious, so I

waited until she had Zachs labs back. She was not impressed nor did she find

the information useful. Perhaps what you are into is far better, but she

felt the Ph.D. misled her on some things and she didn't get NEAR the info she

was expecting.

She has however found some things that help, though not through that

particular avenue.

I'm not trying to discourage anyone, just merely food for thought.

Cheri

[Guest guest]

>Well, I ordered

>EVERYTHING on the list (tons of stuff - and expensive) and started. We

>also began her dietary changes at the same time. What she advocates is

>pretty much the Zone diet (see your bookstore) with lots of supplements

>geared toward each individual and lots of oils (based on the fatty acid

>test).

I tried the Zone diet and it was DISASTROUS for me. Of course we all have

differing metabolic abnormalities, but for what it is worth, it was no good

for me.

Cheri

[Guest guest]

>Well, I ordered

>EVERYTHING on the list (tons of stuff - and expensive) and started. We

>also began her dietary changes at the same time. What she advocates is

>pretty much the Zone diet (see your bookstore) with lots of supplements

>geared toward each individual and lots of oils (based on the fatty acid

>test).

I tried the Zone diet and it was DISASTROUS for me. Of course we all have

differing metabolic abnormalities, but for what it is worth, it was no good

for me.

Cheri

[Guest guest]

Hi Everyone -

With all the talk about BodyBio I just had to put my two cents in..

I worked with Kane's office last fall for about six months to

try and " naturally " help heal my son's worsening problems. We did the

bloodwork through Dr. Cohen (he's always up for a new approach) and she

did the telephone conference with him after the results came back.

Basically what she does is run a series of blood tests and fatty acid

tests and then analyzes them on her own software which she developed

with another lab (in Nevada, I think) after years of research - she is a

PhD in biochemistry. The fatty acid test is sent to Ann Moser's lab at

Kennedy Kreiger - she (Moser) is probably the formost expert on fatty

acid metabolism in the US and works closely with . Instead

of the top five fatty acids, they measure all the known ones (24 in all,

I think). Anyway, then she takes those results along with the blood

results and gives your Dr. a call and makes her recommendations. Dr.

Cohen spoke with her for over an hour - said that her ideas were

interesting and said that most of what she recommended wouldn't hurt

Grant (my son) so that I could try it and see if it helped. She is BIG

on peroxisomal disorders intead of mito disorders. Well, I ordered

EVERYTHING on the list (tons of stuff - and expensive) and started. We

also began her dietary changes at the same time. What she advocates is

pretty much the Zone diet (see your bookstore) with lots of supplements

geared toward each individual and lots of oils (based on the fatty acid

test).

Our results - I initially saw a change in behavior for the better (BUT

we were also weaning him from Dilantin which made him anger-filled) and

a mild decrease in seizures. Then, after about two weeks, his szs.

became worse, so I called and she tightened the diet further - almost

all vegs, protein and oil (no dairy or wheat or hardly any carbs- sort

of the keto diet, but with more amounts). It didn't help and he kept

going downhill. I gave it about five months and then slowly ended it. He

was probably taking 40 pills/day of supplements - ok if they are

working, stupid if they're not. Plus, he had dropped about five lbs and

looked terrible.

Did I give it enough time? I don't know, but I had my local neuro talk

to about her fatty acid test and he said that Grant's

results were normal and it was the way she used her (Dr. Kane's)

software to interpret the results that made it appear so bad. He

( ) also said that they have been doing all kinds of

dietary research on kids with some of the lipid storage diseases and

nothing has helped so far (like Lorenzo's oil only helps to a point, the

outcome remains the same).

I still, however, believe that we should look for more individualized

dietary changes based on our specific body chemistry - that was what I

was looking for in Kane. it is also difficult because

everything is done over the phone and she WON'T talk with you in person

- you go through a woman (Virginia) who is very nice, but you still want

to talk with her in person. Also, since she is not a medical Dr. she

can't work with you and the meds, etc that you are dealing with. You

also must initiate all the follow-up as they don't do that. The cost is

$200 for the test (reimburseable, I think) and I think about another

$100 for the report (out of pocket). Our supplements were $400+ per

month - totally out of pocket.

Ok, that's my story about Dr. Kane - sorry I rambled so much but I

wanted to give you my person experience. Take care - Gail (mother to

Grant -11yrs - intractable seizures and cognitive decline)

As an aside - has anyone heard of a Dr. Viola Freiman in San Diego? I'm

going to take Grant there as soon as we can get in - I've heard great

things about her..

Steve, & Fitzgerald wrote:

>

>

>

> I was just looking back over the Body Bio packet that was sent to me, and I

just remembered why I chose

> not to do this. The pamphlet says that you must have your doctor order the

bloodwork, then fax the

> results to Body Bio. They then generate a report regarding your blood

chemestry, and send it back to you

> and the doctor to interpret on your own. In other words, they don't help you

understand the results and

> tell you what the deficiencies mean and how to correct them.

>

> I guess I just don't see how my son's pediatrician would be able to interpret

the results of a 20 page

> report (nor would she want to), and tell me what it means in terms of

supplements, diet, etc.

>

> Is there any other way to do this?

>

>

>

> > Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

I would also like to add this test is expensive. About $300 dollars and not

covered by insurance.

A friend of mine who is an MD, but not one our docs has an autistic child.

She did some type of bloodwork that was supposed to tell her what foods to

avoid and what supplements to take, etc., all based on his chemistry. She

even got a few extra kits for the labs and told me I was welcome to them if I

wanted to try on my family.

I am into a lot of alternative things, enough to know to be cautious, so I

waited until she had Zachs labs back. She was not impressed nor did she find

the information useful. Perhaps what you are into is far better, but she

felt the Ph.D. misled her on some things and she didn't get NEAR the info she

was expecting.

She has however found some things that help, though not through that

particular avenue.

I'm not trying to discourage anyone, just merely food for thought.

Cheri

[Guest guest]

How about locating a local nutritionist (chk with your closest university or

maybe even surf the web) or naturopath interested in nutrition? S.

More regarding Body Bio

>

>

>I was just looking back over the Body Bio packet that was sent to me, and I

just remembered why I chose

>not to do this. The pamphlet says that you must have your doctor order the

bloodwork, then fax the

>results to Body Bio. They then generate a report regarding your blood

chemestry, and send it back to you

>and the doctor to interpret on your own. In other words, they don't help

you understand the results and

>tell you what the deficiencies mean and how to correct them.

>

>I guess I just don't see how my son's pediatrician would be able to

interpret the results of a 20 page

>report (nor would she want to), and tell me what it means in terms of

supplements, diet, etc.

>

>Is there any other way to do this?

>

>

>

>>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>