Clarification

May 24, 2001

<< The social worker has indicated that I not

be in the room. >>

Hello Janet,

I don't see why you could not be in the room...

When my son had his preschool assesments I was with him for all of them

and they went fine...

I would tell the social worker that you would like to be in the room..

Good luck with the tests,

Colleen-NC

6

4 DSI, Oral apraxia, dyspraxia

May 25, 2001

Janet- Don't know what is up with your district. You definitely have the

right to be there with Adam. I most certainly would bring it up with the

social worker, and don't feel at their mercy. They will do what is easiest

with the least resistance from you most of the time. You do what your

instinct tells you. I know that with my daughter she would've been

impossible to get even a semi-accurate picture of during all of her

evaluations (she's just 4 1/2 now) without us there. Some kids will not

cooperate with others when a parent is there, but others won't cooperate

without a parent there. You want to know what it is they see when you get

those eval results. If nothing else, see if they have a viewing room where

you can watch without him seeing you, but you can see and hear everything.

If Adam is anything like my Kayla, your participation will give a better

portrayal of who he is and what he is capable of- and even then it probably

won't show his full potential. Most kids this age without these challenges

won't perform at their top for others on demand. Good Luck! Tara

May 25, 2001

Janet- you have every right to be with your son. Is the social worker a

part of the school system herself? If so, go to the principal and tell

her your not comfortable and want to be with your child. After being in

the school system a year now, I've learned that you have to be very blunt

and to the point about your wants. I would start by telling the social

worker that you want to be involved in the evaluation and if she still

says, " no " , go over her head. I see no reason for any provider to want

to exclude the parent- unless there is something to hide.

>

> Let me clarify about the evaluation.

> Adam is almost 3 (July) and the evaluations are for the preschool

> program

> with our local school district. The social worker has indicated

> that I not

> be in the room.

June 2, 2001

I will now proceed to embarrass myself, but right now I don't care,

altho I may decide to delete this before posting it.

> :

> Thank you for the very detailed reply to my original message.

However, based

> on your response and others, I think my message wasn't completely

> understood. Let me be as focused as possible.

I think your message was very well understood, but that is only my own

opinion. However, giving specifics as you do here, is much better

than generalizations without support, which you did in your earlier

message.

>

> This group is owned Dr. Houston who, in post #27, took an

opportunity

> to do these things:

>

> * suggest competitors' research was a joke

>

> * suggest product acceptance by consumers is better evidence than

controlled

> testing

>

> * disparage competitors' credentials while positioning himself as

the only

> scientist and true expert in this discussion

>

> * suggest that competitors will probably lie about him and his

product to

> shore up their threatened competitive positions

>

> * claim that he is " not against " the GFCF diet while calling it a

vested

> interest, one that he hopes to put out of business

>

> (New members can find this post, in its entirety, at the bottom of

this

> email. Judge for yourselves.)

Yes he is honest, and even in public, so all members of this forum,

including you, can make their own opinions. He is entitled to his

opinion, just as you are, just as everyone else here is. And I agree

with you and with him on some things, and I disagree with you and with

him on other things. This is a far cry from other enzyme distributors

who I will not name in public, who will not even reply to my private

emails when I ask them questions about their products.

But you are asking people to " judge for yourselves " , but then you

purport to speak for all parents of autistic children on this forum.

THAT is my button you are pushing here. You do make some good points,

and if you would just stop insulting me by purporting to speak for me,

then I would not be so flaming upset with you.

>

> My impression as a reader of ALL posts on the board is that the vast

> majority of them do one or more of the following:

>

> * offer praise and effusive thanks to Dr. Houston, (e.g. posts #293,

#847)

>

> * direct others to Dr. Houston's website and toll-free number, (e.g.

posts #

> 162, #244, #436, #859)

>

> * pose questions (often from the moderators) that provide a forum

for Dr.

> Houston to offer advice or tout the advantages of his products over

> competitor products (e.g., posts #313, #775 ) --sometimes even going

as far

> as to use erroneous information about other products (e.g. post

#442)

Now you are giving your own personal impression, which I am okay with.

You are not purporting to speak for anyone but yourself. However,

many of these posts you are citing here, are other people giving their

own impressions, thanks, questions, advice, etc. Are their

impressions etc not as important as yours?

>

> Out of 800 plus posts I found a handful that:

>

> * Challenge others when they attempt to correct erroneous statements

about

> HNI competitor products (post #745, #790.)

>

> * Ask for additional information on competitive products (e.g. #852)

>

> * Refute misleading or erroneous claims, or offer clarification

(e.g. #786,

> #787)

>

> * Talk about problems with enzymes (e.g., post # 678, 519)

I have messages all over this forum about negative reactions I have

had with Dr. Houston's enzymes [as well as some positive reactions].

However, despite the fact that I indicated that in my previous reply

to you, you do not cite any of my posts in your message here. Hmmmmm,

is that because I am AS, therefore " brain damaged " [which I freely

admit that I am], therefore my opinion and observations and

experiences are not worthy of consideration? If so, then I feel very

sorry for your children that you would have that attitude about them

also. Or is it because I am an attorney, and you are hesitant about

using something I have posted in your own message, because my doctoral

degree in an " argumentative " area would intimidate you from

challenging me? Oh please do not hold me so highly, I am a human

being, and your opinion is just as important as mine. Or is it

because you just did not notice my negative replies here? But then

you said you have read ALL the messages here. Or is it because you

chose for whatever other reason to not include them here? For

whatever reason, there are a LOT more messages about negative

reactions on this message board than you purport to have found.

>

> Net impression: mostly praise and thanks offered to someone with an

> aggressive mission to defeat his competitors, and repeated

directives to

> check out www.houstonni.com. Do you really need to ask why I come

away

> thinking I am in the middle of an infomercial rather than an

objective

> discussion on the pros and cons of enzymes?

I don't need to ask you why you have the opinion you do, it is your

opinion and you should not care whether or not anyone else sees it

" your way " , because you are entitled to see it your way, and it does

not matter what anyone else thinks. I also don't see a problem with

people praising the developer of a product which works for their

child/ren and directing other parents to more information about that

product. Have you praised the developer/s of the products which have

helped YOUR children and directed other parents to their products? It

sure seems to me that you are doing so in your message here.

However, you are entitled to your own opinion, and so long as you do

not purport it to be the opinion of other parents, then being the

attorney that I am, I will defend your RIGHT to say it, altho on a

privately owned message board it is a privilege and not a right. But

you will notice the owner and moderator/s of this message board also

support your right to state it here for everyone to see and make their

own opinions.

>

> I came to this group with no preconceived ideas—only the expectation

that it

> would be an open forum for discussing the use of enzymes. I had not

seen,

> followed, been informed of, or participated in any of the

discussions on

> other message boards that lead to the creation of this board. As the

mother

> of two ASD children, I'm came here for one purpose, and one purpose

only: to

> find and share information that could be used to help my children. I

am an

> advocate of knowledge, balance, proof, data, careful examination,

and

> reasoned debate. I credit all knowledge seekers with intelligence

and the

> ability to fend for themselves, but that doesn't mean I won't

continue to

> " call them as I see them. "

I come to this forum to find and share information and support. I

will freely include my information here, and personally I don't care

who is/are the owners/moderators of this or any other forum. I follow

the rules so far as I understand them, I have not hesitated to say

what I want to say, and I hope my information is helpful to others. I

advocate those things which you advocate here, but the main one in

my opinion is PROOF, and if my child, or any other child, is helped by

something that has no " proof " except observation of that one child,

then I will not question for that particular child, that particular

intervention helped, even if it is as someone here said, standing on

his head every other Tuesday.

Please do continue to call them as you see them. And so will I. But

I would request that you do not purport to then assume that the way

you see things is the way that I or other parents see things.

>

> I have stated that I believe enzymes have played an important role

in

> addressing my boys' biomedical issues, and have contributed to their

> dramatic progress. I am very happy for those who are having good,

even

> great, success with enzyme products. I feel fortunate to count

myself among

> that group. And for others who are not seeing immediate results, I

would

> encourage them not to give up too soon or become discouraged too

quickly. If

> you have the time, go back and take a careful look at the data from

the

> EnZymAid pilot study (post #740. BTW, we were not part of this

study.) In my

> opinion--based on published research, my discussions with parents

and

> doctors, and direct experience--results don't happen overnight.

You are entitled to your opinion, and in fact I agree that for the

majority of children, results do not happen overnight. However I have

read of a few children who took DMG, or after a single round of

chelation, or after a hospitalization which included a certain drug

therapy for an unrelated problem, or after one day of an enzyme

product, or one child even actually fell out of a tree onto his head,

and the very next day the child was remarkably improved. I will not

call those parents liars simply because their story is " too quick " .

>

> So in closing, I'm very interested in the issues surrounding the use

of

> enzymes, and am eager for a forum that really allows for an open

exchange of

> information and ideas. I'll periodically check back to see if this

list

> evolves into a more balanced, and less defensive, discussion.

Enzymes were discussed on other forums, and the forum

owners/moderators indicated that it was not a subject that was really

welcomed on those forums because it was not the " primary purpose " of

those forums, a fact which I dispute but then I am not an

owner/moderator so my opinion apparently does not matter much. But at

that time, you or anyone else could have started a discussion forum

for enzymes, but noone did. So it appears Dr. Houston did what should

have been done earlier. Like I said earlier, I consider this an open

forum and I treat it as such. You are free to post here, or not post

here, as your opinion and impressions would indicate.

I will say tho, that anyone who comes here and purports to speak for

me, you bet I will become very " defensive " . I will defend my right to

have my own mind, my own opinions, my own ideas, without someone

coming here and stating that simply because s/he has one or more

autistic children, that s/he therefore " knows where other parents are

at " and then purports to speak for all of them. I don't know whether

you are ignorant, arrogant, or stupid, but I will assume that your

intentions are good, you just are overstepping your humanity.

May I suggest something to you? This is my own opinion only, so you

are not required to do it, or even to consider it, but I will offer it

to you. My opinion is that these forums are for information and

support. Your first message here indicated information for other

parents, that you found this forum to be misleading at best, and you

believed you should share that information with other parents. That

is in my opinion a good reason to state your opinion.

However, now it does not appear you are providing information and

support, you appear to be basically telling parents here that this

forum is not " open exchange of information and ideas " . Okay you have

made your point, but further information from you on this subject is

now in my opinion not necessary, it would no longer provide

information and support. And in fact you are bordering on non-support

of many parents here, by basically implying that they are being

blindly led down the primrose path by Dr. Houston, and in fact the

quick results some parents here are seeing with their own children

must be fictitious because nothing can happen overnight. Therefore

you appear to be calling those parents liars, hardly information OR

support, in my not-so-humble opinion.

So I will suggest to you, to take it to email. You can email any of

the owners/moderators directly from this forum, just click on their

handle on any post, or from the members page. You can have all your

issues/questions freely discussed in private, without further

insulting the rest of us who are here for information and support.

Thank you for your opinion, you have made your point, and I think you

have made it as well as you can and with good supporting information.

But now it is time to provide information [per 's request, on

the enzyme products or other products with which you have knowledge

and/or experience] or support of the other parents here. So be

respectful of the parents here who are searching for answers for their

children, make your next post relevant to the discussion here, or take

it to email.

And please, do not purport to speak for anyone else but yourself. You

sound sincere, and intelligent, therefore I do not find you ignorant

or stupid. That leaves arrogant. And there is almost nothing that I

as an autistic attorney hate more than an arrogant person who purports

to speak for me and insult me, my experiences, my opinions, and my

intelligence on a message board open to the public.

And to use your phrase from your first message here, thank YOU for

hearing me out.

Dana

November 1, 2006

:

Yes, that was very helpful. I just need to understand the terms used so I

can follow some of the posts. Probably like most of us, I detest going to the

oncologist and getting blood drawn. So I go every other month for tests and

see him once every three months. My parents and my wife are adamant that I

either change medications or somehow get a handle on my side effects.

After taking my Gleevec Holiday in March, I am back having the same side

effects I was last year so I am looking at discussing options with him at my

next visit. I am trying to understand what those options are, what other

people

are doing, and which side effects are medication and which are CML, if that

makes sense to you. A couple of the side effects I have seem to be rarely

discussed like nose bleeds and bloody diarrhea, which may be simply because

they are unpleasant to discuss. Both are side effects that MD and

Novartis report as potential side effects, but my oncologist dismisses them as

dry nose and hemorrhoids (I can assure you he is wrong in both cases). So in

any case, I am trying to get some information that I can use to discuss with

him, so the more I understand the more options I have. Possibly another

Gleevec Holiday or possibly a switch to another medication, which could include

Sprycel.

Knowledge is power, isn't that what Sir Francis Bacon said?

Thanks again for the help.

With warm regards,

Matt Maynor

ville, FL

DX January of 2005

Gleevec Since May 2005

mtmaynor@...

November 1, 2006

I just joined this post a few weeks ago and am oustanded about how

little I know about some of the topics you throw around. Can someone

help me with some terminology? Here are a few of the items I am

confused about:

Log Reductions

PCRU

3 Chromosomes (is this the same as clonal mutations)

I am also amazed that some people are taking less than 400 mg or

alternating doses on different days. This is all new stuff and new

things I can bring up to my oncolgist when I go.

Thanks for the help.

Matt

DX January of 2005

Gleevec since March of 2005

PCR at last test 0.05

ville, Florida

November 1, 2006

Theresa:

Thanks, sometimes my onc. makes me think I am losing my mind or am being a

wimp (I am a big strong guy at 6'4 " so wimp does not sit well with me). Nice

to know someone else has the same side effects and I am not crazy.

I too am the lone wage earner in my family and my salary was cut about 3

months after I was diagnosed and I have not found a job that will replace my

benefits that I would lose, so there I stay. You will be in my prayers, which

makes three prayers a night as I pray with each of my kids.

Thanks again.

Matt

ville, FL

DX January of 2005

Gleevec since March 2005

Last PCR 0.05

November 1, 2006

Matt,

If your doctor will not help you manage your side effects I suggest you fire

him, or at least get a consult from a doctor that is experienced in managing

CML. We are expected to be on these medications for many years and quality of

life is no small concern. (A dose holiday should be a last resort.) I don't know

too much about the bleeding issues but I have had diarrhea/lower GI discomfort

as a side effect and know it can really get to you after a while. I tried

Immodium but that didn't really do enough for me. Recently I switched to Lomotil

and that seems to be much more effective for me at least. Occasionally I take a

stronger pain med if I am experiencing too much discomfort. Also might consider

adiuretic if you are having any issues with edema. Bottom line though is you

deserve answers and consideration from your Dr not a blow-off.

Have you been to www.newcmldrug.com ? The folks in those discussion groups are

the best.

Good luck

Rick

mtmaynor@... wrote:

:

Yes, that was very helpful. I just need to understand the terms used so I

can follow some of the posts. Probably like most of us, I detest going to the

oncologist and getting blood drawn. So I go every other month for tests and

see him once every three months. My parents and my wife are adamant that I

either change medications or somehow get a handle on my side effects.

After taking my Gleevec Holiday in March, I am back having the same side

effects I was last year so I am looking at discussing options with him at my

next visit. I am trying to understand what those options are, what other people