Fatty acids/seizures/Dr. Chez

May 28, 2002

First, let me say how grateful we are for this forum, and to be able to

exchange stories and information about our children so readily. We're most

appreciative of everyone's participation, and their candor.

Now, let me say that I'm not e-mailing in to pass judgment on anyone's work,

either in or out of the medical profession, but we do want to share that our

experience with Body Bio and the tests done by Dr. Kane was not a

terrifically successful one. We did three sets of blood tests with the lab,

over a period of a year and a half, and got both the parents' copies and the

physician's copies. Not only were they wildly contradictory in and of

themselves -- the recommendation would be for Tommy to take, say, 1000 mg

daily of evening primrose oil on one page, 500 mg daily on another, and none

at all on a third -- but the changes from test to test were absolutely

baffling, both to us and to Tommy's immunologist, who directed us to Dr.

Kane's lab. Our doctor discussed this with Body Bio, as well as during the

occasional conference call between the lab, the doctor, and us.

Tommy was taking an army of supplements -- in three stages, three times a

day, maxing out at something like thirty or forty different things each day

-- with little or no results. We also took the dietary recommendations, and

put him on the strict wheat free/dairy free/gluten/casein diet; I'd pretty

much back up a truck to the health food store every week, to get all the

necessary ingredients for his diet and his supplementation. His progress

remained slow, and our quest continued. (Even the immunologist from time to

time expressed his doubts in all the stuff that Tommy was taking, suggesting

that perhaps we should just pull him off everything.) It was a struggle

getting all this stuff into him -- we waged the battle, hoping for the best,

but another unfortunate effect is that it put him off a lot of food.

Tommy's supplements included great gobs of oils, like safflower oil and

sunflower oil. Imagine drinking a cup full of oil, and then sitting down to

dinner -- how much would you eat?

And so our continuing quest took us to Dr. Chez -- first reading about his

work online, then hearing him speak at a Stanley Greenspan-sponsored

conference. (The annual conference is in November, outside of Washington,

D.C.; I highly recommend it.) We flew to Chicago, did a 24-hour EEG with

Dr. Chez, and discovered Tommy's seizure disorder. (This after a Manhattan

neurologist did a one-hour, sleep-deprived EEG, the results of which were

essentially worthless. If you're considering doing an EEG, our experience

leads me to strongly recommend that you do a 24-hour one, though that can be

an arduous day.)

Yes, Tommy was having seizures for a while and we didn't know about it.

They weren't active epileptic seizures, but rather all occurred during sleep

-- basically, his brain was like a hard drive that would erase itself every

night, and something he would learn one day -- the colors, animal sounds,

the days of the week -- would be gone the next. Shortly after Tommy started

on the anti-epileptic, however, his rate of acquisition increased rapidly;

and when he learns something now, he doesn't forget it. The results were

practically immediate, and transformed our little boy -- he's using much

more language, is reading and spelling, is volunteering more information all

the time, and is a quick study. The clarity of his speech remains a real

obstacle, and we're doing an aggressive oral motor program to address that;

but he'll be going to a mainstream school in the fall, and the trajectory of

his progress and success is enormously heartening to us and everyone who

works with him.

Tommy is also taking Aricept, a drug developed for Alzheimer's patients --

you can imagine the look on the pharmacist's face when I presented him with

a prescription for a dementia drug for a four-year-old. But Dr. Chez has

had good success with this as well, for a certain profile of child; we're

fortunate that Tommy fits that profile, but it took a lot of doing to seek

out the right professionals.

I'm sure that the Aricept/carnosine/depakene combination isn't right for

every child, just as I have no doubt that Dr. Kane's lab and its

recommendations can be enormously useful to some children under some

circumstances. However, we did want to share our experience that Body Bio

isn't all things to all people; it couldn't be. Nothing could.

Anyway, here's the contact info for the good doctor:

Dr. Chez

Autism and Epilepsy Specialty Services of Illinois, Ltd.

44 East Scranton

Lake Bluff, IL 60044

(847) 735-0300

<http://www.neurologychannel.com/pediatricneuro/index.shtml>

Sorry to go on so long, and thanks.

-- Jon Danziger & Winston, parents of Tommy, age 5

May 28, 2002

Deirdre,

Yes Ann Moser is Dr. Hugo Moser's wife. There are different kinds of

lipid panels offered. There is a serum panel that looks for metabolic

problems like ALD (adrenoleukodystrophy) or the red cell lipid panel

that is what we are talking about here. Yes, e-mail me any time,

it is a bit crazy with Forrest wanting to spend all day in the

pool, and evenings with visiting my mother-in-law in the hospital,but

I will try to get back with you. Best,

Danziger wrote:

>

> First, let me say how grateful we are for this forum, and to be able

> to

> exchange stories and information about our children so readily. We're

> most

> appreciative of everyone's participation, and their candor.

>

> Now, let me say that I'm not e-mailing in to pass judgment on anyone's

> work,

> either in or out of the medical profession, but we do want to share

> that our

> experience with Body Bio and the tests done by Dr. Kane was not a

> terrifically successful one. We did three sets of blood tests with

> the lab,

> over a period of a year and a half, and got both the parents' copies

> and the

> physician's copies. Not only were they wildly contradictory in and of

> themselves -- the recommendation would be for Tommy to take, say, 1000

> mg

> daily of evening primrose oil on one page, 500 mg daily on another,

> and none

> at all on a third -- but the changes from test to test were absolutely

> baffling, both to us and to Tommy's immunologist, who directed us to

> Dr.

> Kane's lab. Our doctor discussed this with Body Bio, as well as

> during the

> occasional conference call between the lab, the doctor, and us.

>

> Tommy was taking an army of supplements -- in three stages, three

> times a

> day, maxing out at something like thirty or forty different things

> each day

> -- with little or no results. We also took the dietary

> recommendations, and

> put him on the strict wheat free/dairy free/gluten/casein diet; I'd

> pretty

> much back up a truck to the health food store every week, to get all

> the

> necessary ingredients for his diet and his supplementation. His

> progress

> remained slow, and our quest continued. (Even the immunologist from

> time to

> time expressed his doubts in all the stuff that Tommy was taking,

> suggesting

> that perhaps we should just pull him off everything.) It was a

> struggle

> getting all this stuff into him -- we waged the battle, hoping for the

> best,

> but another unfortunate effect is that it put him off a lot of food.

> Tommy's supplements included great gobs of oils, like safflower oil

> and

> sunflower oil. Imagine drinking a cup full of oil, and then sitting

> down to

> dinner -- how much would you eat?

>

> And so our continuing quest took us to Dr. Chez -- first reading about

> his

> work online, then hearing him speak at a Stanley Greenspan-sponsored

> conference. (The annual conference is in November, outside of

> Washington,

> D.C.; I highly recommend it.) We flew to Chicago, did a 24-hour EEG

> with

> Dr. Chez, and discovered Tommy's seizure disorder. (This after a

> Manhattan

> neurologist did a one-hour, sleep-deprived EEG, the results of which

> were

> essentially worthless. If you're considering doing an EEG, our

> experience

> leads me to strongly recommend that you do a 24-hour one, though that

> can be

> an arduous day.)

>

> Yes, Tommy was having seizures for a while and we didn't know about

> it.

> They weren't active epileptic seizures, but rather all occurred during

> sleep

> -- basically, his brain was like a hard drive that would erase itself

> every

> night, and something he would learn one day -- the colors, animal

> sounds,

> the days of the week -- would be gone the next. Shortly after Tommy

> started

> on the anti-epileptic, however, his rate of acquisition increased

> rapidly;

> and when he learns something now, he doesn't forget it. The results

> were

> practically immediate, and transformed our little boy -- he's using

> much

> more language, is reading and spelling, is volunteering more

> information all

> the time, and is a quick study. The clarity of his speech remains a

> real

> obstacle, and we're doing an aggressive oral motor program to address

> that;

> but he'll be going to a mainstream school in the fall, and the

> trajectory of

> his progress and success is enormously heartening to us and everyone

> who

> works with him.

>

> Tommy is also taking Aricept, a drug developed for Alzheimer's

> patients --

> you can imagine the look on the pharmacist's face when I presented him

> with

> a prescription for a dementia drug for a four-year-old. But Dr. Chez

> has

> had good success with this as well, for a certain profile of child;

> we're

> fortunate that Tommy fits that profile, but it took a lot of doing to

> seek

> out the right professionals.

>

> I'm sure that the Aricept/carnosine/depakene combination isn't right

> for

> every child, just as I have no doubt that Dr. Kane's lab and its

> recommendations can be enormously useful to some children under some

> circumstances. However, we did want to share our experience that Body

> Bio

> isn't all things to all people; it couldn't be. Nothing could.

>

> Anyway, here's the contact info for the good doctor:

>

> Dr. Chez

> Autism and Epilepsy Specialty Services of Illinois, Ltd.

> 44 East Scranton

> Lake Bluff, IL 60044

> (847) 735-0300

> <http://www.neurologychannel.com/pediatricneuro/index.shtml>

>

> Sorry to go on so long, and thanks.

>

> -- Jon Danziger & Winston, parents of Tommy, age 5

May 28, 2002

Jessia, I couldn't help but laugh when I read your letter, that was

pretty close to what I said to my husband when we got our diet from

Dr.Kane! In fact, it would gotten filed with his other useless

test results and recommendations, if it hadn't been for him.

My husband is the 'food channel king', he loves to watch that

channel! He said that we could add the oils to his food, and after

I started reading package labels, I realized that we were going

to have to start with foods that didn't contain any oils.

They weren't cold-pressed and practically everything had canola

oil added. And that was to be COMPLETELY restricted from his diet.

I can only imagine how much oil was in those chips he would want

to snack on all day. We just did a little at a time, spaghetti

sauce would get a teaspoon of one oil, and gravies, I could

add another teaspoon, after a while it got easy to figure out

how to use those oils, even if I could only add the ones that

couldn't tolerate high heat temperatures until later. It does

look very over-whelming in the beginning. If you ever ever ever

decide to go back and try it again, I would be happy to help

you. Me and some other moms came up with recipes and ways to

use the nuts and seeds, how to make mayo from other oils, etc.

Best,

May 29, 2002

Donna and Betsy -

My son just turned five and yes, he has a lot of unprompted language

(complex sentences, imaginative stories). However, it has taken about 9

months from the time of his first " clean " EEG to develop and his

articulation remains a serious issue. His experience sounds similar to that

of Hayden, in that he understood everything and had the beginning of a core

vocabulary, all of which was subsequently lost. He began to regain his

language gradually, but he really recovered when his seizure disorder was

corrected. It was almost overnight (well, maybe a month is more realistic)

that his receptive language returned and in the subsequent months with the

seizures abated, the expressive developed...Betsy, yes we had no idea,

although some suspicion, that there was seizure activity. Apparently, with

this disorder, Landau Kleffner, the seizures are primarily nocturnal, and

subclinical, so you can't see them. (I think Dr. Laverman (sp?) keeps urging

people to get 24 EEG's done if one is called for, I am assuming to rule out

this disorder....excellent advice from my experience and I wish I had gotten

it earlier).

May 29, 2002

Regarding these nocturnal seizures, if you are in the room with your child,

will you see any evidence of the seizure or is this type completely

unnoticeable? thanks, Carolyn

May 29, 2002

My son did something last night in his sleep. I hope it isn't a

seizure, but I am wondering. He fell asleep on the couch after his

bath. I let him sleep for an hour or so. When I went to move him, he

stirred and I asked if he wanted to go potty? He nodded, yes. I put

him on the potty. He turned his head to the right and raised his right

arm, then started to jerk it up and down, like dribbling a basketball.

I asked him what he was doing, No response. His eyes were open, but not

seeing. When I picked him up, he seemed fine and went back to sleep.

Terry

May 29, 2002

Terry, if your son is like my daughter there are times when she seems awake when

she isn't. Perhaps he was really asleep the whole time...I know my daughter has

a lot of parasomnia activity and this sounds pretty similiar so don't worry too

much, just keep an eye on your little guy. :-)

Tammy

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