Re: Digest Number 323

[Guest guest]

Has anyone here been diagnosed with Neurally Mediated Hypertension and

treated effectively by s Hopkins?

-

[Guest guest]

___

I agree with Jan. My 4 yo son has not been dx with tourettes, but the thought

is there in my mind for him too.

We probably do at least 1.5 hours per day (over a three or four " sessions " ) of

sensory integration for different things, and over the long haul, I have seen

improvements. In Sept/Oct his stimming went to the point of self injury.. he

was biting his hand so badly it was cracked and bleeding. We tried some ABA

tactics, but after 2 months, we saw nothing. I then spoke with someone about

sensory integration and attacted it from that angle.

We put a rubber foot on a retractable string and used it to redirect him when he

would stim. Along with that, we did SI at both ends of the problem (on the hand

and in his mouth). After about a month of brushing, massaging, etc, this stim

has come down almost to nothing.

We also do ALOT of brushing, joint compression, and other SI for him to help him

regulate and be able to pay attention.

Roe

______________________________________________________________________

[Guest guest]

Roe just wanted to add to what you said about the hand biting. My son was

teeth pushing (pushing his 2 top teeth in to the back of his right hand)

almost 120 times a day. His developed a huge callous on his hand and

sometimes his teeth would break through the skin. We knew that he did this

when he was upset or over excited (which was alomost all the time) and that

he teeth pushed to calm himself. We tried a number of SI tactics but it

wasn't until we put him on zoloft for his HIGH anxiety that the teeth pushing

dropped to less than 15 times a day in less than 2 months!! The Si still

helps with the anxiety too though as he is now on a tiny tiny dose of prozac.

JAN

[Guest guest]

Where is your son in his treatment? Is his behavior related to viral or

fungal die off or is he past that? Kathy

[Guest guest]

Kathy I think it was me that yu were asking about where my son is in his

treatment. He has just had blood sent to Dr. Singh for testing. He is looking

at MMR titers, herpes, CMV etc..... I have been wanting to treat him with

IVIG or antivirals but after all the horror stories I am very hesitant. He

was almost 5'9 " and weighs about 210. When he looses control he can easily

put a hole in the wall with his foot, or break windows. he also jumps and

hits. As much as I want him to get better he can get dangerous when he is out

of control. WE have him on probiotics, he was on a casien free diet for 4

months but we saw no change. He also has bipolar disorder and tourettes.

Right now he is doing very well so I don't want to do anything to him that

will change how happy and calm he is right now.

[Guest guest]

I just watched a presentation by Dr. Singh! He appears to be a kind man. His

approach is similar to Dr. Goldberg's. When you have the viral or the fungal

die off you can expect your son's symptoms to worsen for 2-3 weeks and

perhaps longer. Dr. Goldberg recommends Tylenol because he thinks that the

kids actually feel sicker but after that you may see a slow positive

progression. To me seeing the abnormal lab results in black and white gives

me the concrete reasons behind the behavior and knowing that lack of

treatment will only make them get worse keeps me going. You may not want to

rock the boat (AND I DON''T BLAME YOU) but are you assuming that he will not

get worse without you doing anything? That seems to be the nature of this

disease in many children. Unfortunately you have the choice of treating him

and putting everyone through a bad experience for perhaps a long while with

the ultimate result of him becoming better or taking the risk that this might

not progress. Sort of a bird in the hand is worth two in the bush. You know

the kid you have now and the unknown could be quite scary. My daughter is not

having a good time with the " blue medicine " but she has had moments of

wonderful behavior so we know that ultimately we will get where we want to

be. Yesterday she cleaned our deck (2 and a half feet of snow on it) and that

is the first time she has ever been able to accomplish a task like that! Good

Luck and keep us posted on your progress! Kathy

[Guest guest]

Cara,

Just in case you didn't see this.

===================================

In a message dated 3/11/00 2:09:20 AM, dwarfismonelist writes:

<< Message: 9

Date: Fri, 10 Mar 2000 16:16:04 -0800 (PST)

From: Robyn <dwarfmodel@...>

Subject: Radio show

Hi everyone!

My name is Robyn and I'm a 17 year-old with

Diastrophic Dysplasia, and I've been a member of LPA

since I was 13. I've always been very open about my

dwarfism to strangers or people who ask questions, and

I have a very thrilling situation that is developing

that I'd like to share with everyone on the list-serv!

I live in Milwaukee, and in the area we have a very

popular radio show called " The Joe Show " on 103.7 Kiss

FM, which I am a fan of. There is Joe, Van, and Ginger

who host the show. The other day I was listening as I

usually do in the mornings, and Joe was saying, " I was

coming out of the airport bathroom and this short guy

didn't wash his hands.. " Then, I heard Van say, " Oh a

midget!? " This really bothered me, and I suddenly

remembered that he had said that once before and I was

very bothered by it by it as well. So I decided to

take some action. I composed a very polite, informing

e-mail to the show letting them know that midget is

derogatory and offends little people and the correct

terminology is 'dwarf' or 'little person.' I mentioned

some other things about what its like to be a dwarf. I

also said that the guy probably didn't wash his hands

because he couldn't reach the faucet! (If infact he

was a dwarf) The next day they read my email on the

show! Unfortunately I didn't get to hear it, but my

friend did. Then I received an email from Joe, the

host, saying that Van was naive and didnt know any

better, and he asked me if I wanted to be the

" Honorary Dwarf of the Joe Show! " So I asked what does

it consist of? And he said I would come on the show

and they would play " Ask the Dwarf " so I could do more

informing about dwarfism to the public. I know they

are serious because the suggested I go on next week.

At first I was thrilled with this news,and I thought

wow this is my chance to give a big voice for the

little people and a challenge as well to be on the

radio w/ thousands of people listening. But my dilema

was that one of my average-sized friends thinks that

it might be some sort of a joke, or if I do it...would

the public make me a laughing stock of the city? She

also thinks I might let the fame go to my head, but I

know in my heart that I am just excited. And she said,

" So many people go on the radio everyday..it's not

that big of a deal. " And I said, " how many people do

you know from our school specially invited as an

honorary member to be on a radio show to talk about

what they believe in? " I want to take this challenge

to inform people and risk being made fun of, but I am

confident the audience will be mature and ask very

good questions. My friend took my excitement away, and

now I am asking the list-serv to give me some advice.

My parents and other friends are all for me doing

this, and so am I but the little voice of my friend is

really bothering me. I hope to hear opinions from the

list-serv. Please write back, thank you!

Sincerely,

Robyn

================

District 6

Teen Coordinator >>

[Guest guest]

Cara,

Great job!

==========================

In a message dated 3/11/00 2:09:20 AM, dwarfismonelist writes:

<< Message: 13

Date: Fri, 10 Mar 2000 22:43:50 -0500

From: " Cara Egan " <egan921@...>

Subject: Re: Radio show

Hi Robyn,

I think it's great that you have responded to the station in this way, and

that they appear to want to make amends. I have read about other members of

LPA and their experience " converting " jerky DJs. It's seems to be a

worthwhile mission!

I certainly understand your concern, however. Here are a few things I would

recommend:

*Call someone at the radio station, the station manager perhaps, and voice

your concerns. I'm hoping you will be reassured by his/her response.

*You didn't mention it in your e-mail, but make sure they know how old you

are. You sound very mature for your age, but they should know they are

dealing with a minor.

*Have someone accompany you (a parent, etc.) to the station on at least your

first visit .

*This last one is more personal preference than anything. But if I were you,

I would ask the radio station/DJ to include at least your first name in the

promo title. I don't think there's anything wrong with using the word

" dwarf " in the title but I think the title of Honorary Dwarf or Ask a Dwarf

alone sounds a little de-humanizing (I'll probably get in trouble for saying

that). Just my personal opinion.

Thanks for your hard work! Good luck with it and let me know what happens!

Sincerely,

Cara Egan

LPA Public Relations

>>

[Guest guest]

>

> Message: 2

> Date: Sun, 30 Apr 2000 10:49:28 -0400

> From: " Donna \ " k\ " " <donnalk@...>

> Subject: Re: 's views

>

> ,

> Her views, while you may not want to accept it, are shared by

> many, myself included. I have seen much incompetence and

> carelessness at the hands of conventional medicine in my lifetime

> and I would suggest to any of my loved ones, without hesitation,

> to seek alternative therapies to enhance their life rather than

> to tear it down at the hands of people in your profession. I

> think you are just too worried about the fact that many people

> are turning to alternative care as they are now taking the

> control for their own health back, which is as it should be, and

> your pockets might not be a full as you would like? That's the

> bottom line and you will never convince me otherwise.

> Donna K

Donna, as herself has said, there are horror stories within

alternative medicine too. I suggest that the existence of incompetence and

or carelessness in some areas of medicine has very little to do with what

people should do if they get a primary cancer, which is what I thought we

were talking about. I have pointed out that no one knows what to expect

of any combination of alternative treatments for any particular primary

cancer, and no one has challenged this. We do know what to expect in terms

of long term survival rates with conventional treatments.

Cancer treatments are in most countries these days the task of

multidisciplinary specialist groups using well defined protocols that have

been developed on the basis of thorough research. There may be small

variations in practice and quality between different centres, but there

should be little incompetence in the board certified specialists involved in

centres. That is, unless America is somehow lagging behind the rest of the

world in cancer care, which I doubt.

Tarring all medicine with the one brush might be unwise.

[Guest guest]

> Message: 3

> Date: Sun, 30 Apr 2000 08:42:35 -0700

> From: " VGammill " <ygammil1@...>

> Subject: Re: 's views

>

> ,

>

> I think that lately you have toned down the rabidity and

> obnoxiousness

> of some of your presentations. You do not rely as often on the use of the

> queenly second person plural. I do think that subscribers are more

> interested in what YOU think than what is presented as hive-think from the

> bought-and-paid-for scientific community. We know that we are no

> match for

> corporate greed, but we do think there is room for evolution in

> individuals

> such as yourself -- and ourselves too.

>

> One of the main criticisms that obligate allopaths sustain is their

> patronizing arrogance. I know you may think that your arrogance is

> justified because you march in lock-step with corporate-sponsored

> scientism,

> but please reread some of your response to :

>

> > Yes, you are incensed. I think you are also like a spoilt

> child, stamping

> > your feet, railing at reality, and saying " It's just not fair. "

>

> With the list's disgust with the patrimonial attitude of allopaths,

> don't you think that you are baiting not only but most

> of the list?

> Some of the things that you say may have limited merit. But do you think

> that you are going to get a fair hearing when you treat each

> respondant as a

> mental waif? Have you ever stopped to consider that it may be

> you (and the

> whole scientific community) who have wandered around in the desert for 40

> years?

>

>

>

>

Hi again Vince. I thought I was actually very temperate in relation to the

material that posted and suggest that you reconsider who was

baiting who. Which one of us was talking about " killing fields " within

medicine, when she knew a doctor involved with cancer treatment is

listening, even referring to me by name? Hers remains a wholly emotional

response to some things that could do with some calm consideration and

analysis. If this is arrogant and patronising, so be it.

In answer to your last question the answer is yes. It would take too long

to go through my process of initially being impressed about much that AM had

to say, but gradually realising that the testimonial evidence did not seem

to be correlating with a lot of other evidence about alternatives. It was

the realisation of this in relation to one of the really big clinics that

turned me back into an 90% skeptic. I still feel that there may be a small

excess of believable testimonials over and above what could be explained by

known mechanisms regarding some alternatives, but wonder whether this is due

to any property of the alternative being used, or other factors.

I do also feel strongly that only the introduction of a little METHOD into

the assessment of alternatives will enable the big questions ever to be

answered, and that you should all be expecting, demanding this right now of

those marketing alternative cancer treatments, especially of any new players

entering the market.

Moran

[Guest guest]

,

I watched a tape today about European studies on a product called Fractal.

The tape had MD's interviewed and very excited about this as a cancer

fighter. Just wondering if you were familiar with this. It seems to be in

the mainstream medical arena there ( being France and Belgium). One of the

studies is at Belgium Free Univ. I believe was the name. They mentioned

working with Scripps in San Diego on this also.

Just trying to get information.

Ann

[Guest guest]

> Message: 5

> Date: Sun, 30 Apr 2000 15:06:48 -0500

> From: Webster <michelle@...>

> Subject: To , From your favorite " brat "

>

> from Moran:

>

> , you are one of the reasons that I am contributing to

> this list. I

> have been listening to the poison that you have been dripping

> into it about

> conventional medicine and especially doctors for many months.

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

>

> AHhhhhhh, so we have uncovered your motivation. I have hit a

> nerve, BINGO.

> It was clear to me, since your arrival, but not clear to all present, that

> you are investigating " people like me " whatever that means, who " drip

> poison " .

>

> Am I the only one being identified in your investigation, or are there

> others on this list?

Actually I may owe you a small apology. I thought that you were the person

who a while back encouraged a newcomer to the list with a newly diagnosed

cancer to go " fully alternative " . On going back through what posts of yours

that I can find I have been unable to confirm that it was you who said this.

Perhaps it was someone else.

This was my main interest in " people like me " (your phrase, not mine)', but

you have since provided other grounds for regarding you as part of a group

of somewhat unhinged fringe dwellers within AM. I refer to the type that

put up lies on web pages telling cancer sufferers that conventional

treatments don't ever work, or somehow believe the absurd generalisation

that medical treatments of cancer are worse than the disease, despite a huge

amount of solid and readily available evidence to the contrary.

You certainly seem to be full of arrogant opinions that you so far have not

cared to support or justify when challenged. You also have not bothered to

respond to my asking you to reveal what " unscientific treatments " you claim

are being used upon cancer patients.

The main text of your criticisms of conventional cancer care seems to relate

to inadequate " disclosure " , that patients aren't informed about the

potential side effects of treatments. That could be so in some instances,

but does not of itself mean that the use of the treatment was not

appropriate in the clinical circumstances. I would also point out that the

concept of " informed consent " is being aggressively enforced by crippling

litigation against doctors. Some doctors even go as far now as videotaping

consultations, and giving a copy to the patient, so there is no doubt later

as to what the patient has been told. One doctor in Australia was recently

sued successfully for failing to reveal a complication of surgery that has

an incidence of one in 40,000.

Doctors certainly could not get away with the convenient disclaimer that

alternative medicine operates under, about persons being fully responsible

for their own health. The issue of informed consent in relation to

alternatives is, in fact, largely why I am here. People can be led into

taking unjustified risks with readily curable cancer by taking what " people

like you " say too seriously. You and your ilk can rant away to your heart's

content about the evils of medical treatments of cancer without having to

ever justify your position (except for right now), or having to accept any

responsibility at all for what some simple soul may decide to do under your

undoubtedly potent influence.

>Any natural therapy that I would recommend personally would have to follow

>the first law of medicine currently being ignored by most oncology doctors,

> " FIRST DO NO HARM " .

This is an absurd abjuration to try and take literally when applied to a

cancer that is relentlessly eating away into someone's tissues, with the

potential to stifle their breathing, block off their bowels, and many other

nastinesses. What on earth can it mean in this kind of context? If I can

cure a melanoma by taking up a knife and cutting it out, is that doing harm

to the patient? If you had evidence that any alternative can consistently

or reliably halt the progress of cancer THEN you could reasonably start to

criticise the ways in which medicine tries to prevent or relieve the

miseries of those suffering from it.

>Most of the people here on this list have seen the horrors of cancer, or

>will at some time of their life during our current epidemic.

Yes, they see a tiny little corner of cancer, where the failures are

inevitably more visible than the 50% or so who conquer it using only

conventional treatments, and the close to 100% of those readily cured of

early cancers are almost completely invisible. Some also like to rub noses

constantly in the bad stuff so as to distract any attention from the murky,

when not actually fraudulent or deluded, promise of the alternative cancer

scene. I am pleased to see some on this list are not afraid to speak out

about their bad experiences with some AM setups. (Note what I have said

previously. I don't know that some never help. There are also circumstances

when anything may be worth a try.)

And the " cancer epidemic " is another AM myth with which to lash the

supposed " cancer establishment " . Easily available figures now show that

deaths from lung cancer due to smoking are the only ones escalating in the

last twenty or thirty years. Deaths from breast cancer seem to be falling.

Deaths from stomach, pancreatic and some other cancers are definitely on the

decline.

Moran

[Guest guest]

Ann,

Sorry, I missed this query, too. No, I haven't heard of this yet. It

hasn't gotten into the medical journals I read yet either, so I wonder how

mainstream it really is. Conventional research is not usually circulated

by videotape, either, so I do wonder. Where did the tape come from and what

are they claiming?

> Re: [ ] Digest Number 323

>

>

> ,

> I watched a tape today about European studies on a product called

> Fractal.

> The tape had MD's interviewed and very excited about this as a cancer

> fighter. Just wondering if you were familiar with this. It

> seems to be in

> the mainstream medical arena there ( being France and Belgium).

> One of the

> studies is at Belgium Free Univ. I believe was the name. They mentioned

> working with Scripps in San Diego on this also.

> Just trying to get information.

> Ann

>

[Guest guest]

In a message dated 5/30/00 5:18:23 AM Eastern Daylight Time,

Hepatitis Cegroups writes:

<< If your

husbands faith is that strong maybe you can lean on him for his faith till

yours comes in to focus. Everyone falls from time to time and we have to

pick

ourselves up and get going again. I believe in you and I believe YOU Can do

this. Sorry to hear about your friend, and his family. It must be very hard

>>

If your

husbands faith is that strong maybe you can lean on him for his faith till

yours comes in to focus. Everyone falls from time to time and we have to pick

ourselves up and get going again. I believe in you and I believe YOU Can do

this. Sorry to hear about your friend, and his family. It must be very hard

[Guest guest]

In a message dated 5/30/00 5:18:23 AM Eastern Daylight Time,

Hepatitis Cegroups writes:

<< If your

husbands faith is that strong maybe you can lean on him for his faith till

yours comes in to focus. Everyone falls from time to time and we have to

pick

ourselves up and get going again. I believe in you and I believe YOU Can do

this. Sorry to hear about your friend, and his family. It must be very hard

>>

If your

husbands faith is that strong maybe you can lean on him for his faith till

yours comes in to focus. Everyone falls from time to time and we have to pick

ourselves up and get going again. I believe in you and I believe YOU Can do

this. Sorry to hear about your friend, and his family.

Thank you for this encouragement.I needed it greatly and have been leaning on

my husbands faith.I hope and pray he stays strong!

Goldy

[Guest guest]

At 01:58 PM 7/14/00 +0000, you wrote:

>Good Morning Everyone! I'm looking for some information on how people

>store, package, and use hydrosols. I'm familiar with what they are and how

>people generally use them. I was wondering if anyone had new ideas for uses

>and ways of selling to public. Also, do you keep them refrigerated? Store

>them only in glass? Lots of questions! They look really cool, and the

>Lavender hydrosol I received is fantastic to use when chilled. Any

>information you can share would be great!

we keep them refrigerated. Some vendors add preservatives, I know of one

vendor who uses colloidal silver as the preservative (NOT saying whether or

not that is effective here...don't want to go there.)

I would be very leary of retailing them in a situation where they can sit

on a store shelf, unrefrigerated, for months. I don't even like the idea

of shipping them in the summer heat.

Your source for superb Essential Oils, Aromatherapy

Accessories, Information, Books and more!

Visit us at: <http://www.naturesgift.com>

[Guest guest]

hi er4yt - ers ! really appreciates your responses... gary for the

walnut/pumpkin seed combo, suzanne for the added carob/tamari.... big

thanks to you for the pizza crust recipe -- will try that tonight -- if

I can find the spelt flour... gina in bc, renton is kindof far but I may try

to check it out ....

made pepperment " sun " tea yesterday and put it on ice,, not too bad!

I keep missing the milk man in the early am -- need to stop delivery on milk

+ OJ!!! since we're not drinking them the refrig is full that stuff !!

any comments on a 3 yr. old eating this way? he drinks a lot of soy milk...

but don't know if I should take him off reg. milk... He's an " o " too.

thanks everyone!

[Guest guest]

thanks peter for the rice bread recipe... did you try it? did you like it?

[Guest guest]

Re: Digest Number 323

> any comments on a 3 yr. old eating this way? he drinks a lot of soy

milk...

> but don't know if I should take him off reg. milk... He's an " o " too.

>

> thanks everyone!

>

I think it would be to the child's advantage to start eating correctly the

sooner the better. If you are a new comer to the group you missed all the

info on Soy. I'm sorry I do not have it on my system still but I'm sure

someone does. I have switched to a fortified rice mild.(fresh) It has all

the same properties as cow milk as Vit D and calcuim are added. It tastes

really good as well. It seems to be a bit difficult to find in different

areas though.

> ------------------------------------------------------------------------

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> Instant Approval!

> Aria Visa - get yours today.

> 1/7102/10/_/473523/_/964201503/

> ------------------------------------------------------------------------

>

> You are receiving this email because you elected to subscribe to the

mailing list.

[Guest guest]

lescase@... wrote:

> any comments on a 3 yr. old eating this way? he drinks a lot of soy milk...

> but don't know if I should take him off reg. milk... He's an " o " too.

my son is allergic to milk so he can't have milk...and actually there is no

reason

that we (as humans) have to have milk. Milk is actually for babies. For the

*most* part other animals do not consume milk past infancy.

Just make sure that he gets calcium from other

sources. Tho soy and rice milks are calcium fortified and a good source.

Although if he was an infant you'd go with a soy infant formula....and actually

i've heard that calcium is more bioavailable from other source such as

broccoli, sardines (bones). So personally *IMO* not drinking milk is not

too big a loss (with the exception of cheese and icecream *pout*).

Crystal (new to the ER4YT tho).

[Guest guest]

peter, I have to invest in a bread machine! that rice bread sounds good,,,

what is in the 2 cups of " bread mix " ? isn't the bread mix the flour part?

crystal, agree w/ you on the soy/rice milk for kids... will give rice milk a

shot!

thanks!

[Guest guest]

It is wheat and gluten free bread mix which you can buy. You can also make

your own from a mix of rice and soy flour. You could try any combinations

of flour.

Good Luck

.

Re: Digest Number 323

peter, I have to invest in a bread machine! that rice bread sounds good,,,

what is in the 2 cups of " bread mix " ? isn't the bread mix the flour part?

crystal, agree w/ you on the soy/rice milk for kids... will give rice milk a

shot!

thanks!

------------------------------------------------------------------------

Make new friends, find the old at Classmates.com:

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[Guest guest]

I read that too, from the same list. About autistic kids being low on natural

vitamin A. We put on cod liver capsules (after the diet was well

established so we would know if there was a difference). I think it made him

focus a bit more. It wasn't as dramatic of a change as the gf diet, though.

Loriann

[Guest guest]

I posted a few times on the gf/cf list and they talked alot about giving

there kids Cod Liver Oil, saying there was many a articles on natural

vitamin A and autism, they all seem to think it is really working, just

wondered if anyone knew anything on this.

Lori

Digest Number 323

>

>

>

[Guest guest]

Great idea , i'd like a copy when you get it done.

ERICKA