Questions

[Guest guest]

No, you should not be given other children's diagnosis; that is confidential. Since your child is high functioning, why don't you go for inclusion? Pat K

[Guest guest]

I didn't say he was high funtioning in all areas, Pat. There is no Resource Room, say, for a side bit of help, that makes a kid have a memory if his isn't working.

J

Since your child is high functioning, why don't you go for inclusion? Pat K

[Guest guest]

Hi, . I'm a parent advocate with our State's PTI, so I thought I'd chime in and answer a few of your questions:

-----Original Message-----From: Pabst [mailto:julie@...]

(QUESTION ONE: do I have a right to formally askthese classmate's diagnosis?)

Nope -- it's confidential information unfortunately. You can ask if they are his developmental/neurological/cognitive peers.

QUESTION TWO: what does this mean and have other kids "presented" this way?

It's great that your son is mirroring behaviors -- it means he's observing what's going on around him vs. being in his own realm. However, his contact with other children who have their own behavior issues needs to be facilitated so that they're not mirrored.

Missy in Md.

J

[Guest guest]

you know we have that vilent outbursts with risperdol too now that you mention it..jen

[Guest guest]

oh that we definitely do

[Guest guest]

Sandy, I wish I could help, but I can only sympathize. We tried to get karac (11) off of his Geodon because it had caused tardive dyskinesia, but it made him wild and aggressive so we had to put him back on at half of the dosage. Now he is calm again. I don't know what you can do once they have been on the antipsychotics. If you learn anything, please share. Pat K

[Guest guest]

> Sandy, I wish I could help, but I can only sympathize. We tried to

get karac

> (11) off of his Geodon because it had caused tardive dyskinesia,

but it made

> him wild and aggressive so we had to put him back on at half of the

dosage.

> Now he is calm again. I don't know what you can do once they have

been on the

> antipsychotics. If you learn anything, please share. Pat K

Pat,

How long was he off the geodon before he went back on it do you

remember? I am sorry about the tarkive dynkinesia.

take care,

Sandy

[Guest guest]

Sandy, we tried once to take Evan off risperdal without any thing to change

him to and even though we did it slowly, very slowly, he started raging over

anything that was not his way. We changed him later to Abilify and slowly

took him off the Risperdal. He has been put on Trazdone to help him sleep

or rather stay asleep.

Betty

[Guest guest]

Karac was only off the Geodon for several days before he was put back on at half dosage because he was so aggressive that it was scary!! Karac will be twelve this month and he weighs more than I do. When he goes into a rage I put on my thick wool coat and some mittens that look like boxing gloves to protect myself. Right now with half dosage of Geodon he is very sweet, but the TD is not getting better and I fear it will get worse. The thing that is so frustrating to me is that the doctor should never have put him on such a large dose to begin with and I protested at the time, but I am just the grandmother. His mother has an appointment for him with the ped. psy. this Thursday and I am going too. Hopefully we can come up with some help for Karac. How are things going now with you and yours? Pat K

[Guest guest]

> Sandy, we tried once to take Evan off risperdal without any thing

to change

> him to and even though we did it slowly, very slowly, he started

raging over

> anything that was not his way. We changed him later to Abilify and

slowly

> took him off the Risperdal. He has been put on Trazdone to help

him sleep

> or rather stay asleep.

>

> Betty

Thanks, Betty. I think if we could just get him back on a regular

sleeping schedule it would certainly be helpful. I will ask doctor

about trazdone.

Sandy

[Guest guest]

> Karac was only off the Geodon for several days before he was put

back on at

> half dosage because he was so aggressive that it was scary!! Karac

will be

> twelve this month and he weighs more than I do. When he goes into

a rage I put

> on my thick wool coat and some mittens that look like boxing gloves

to protect

> myself. Right now with half dosage of Geodon he is very sweet, but

the TD is

> not getting better and I fear it will get worse. The thing that is

so

> frustrating to me is that the doctor should never have put him on

such a large dose

> to begin with and I protested at the time, but I am just the

grandmother. His

> mother has an appointment for him with the ped. psy. this Thursday

and I am

> going too. Hopefully we can come up with some help for Karac. How

are things

> going now with you and yours? Pat K

Looks like we both have appointments this Thursday. It is hard,

isn't it? How fortunate it is for Karac and Mom you are there to

offer support. Grady actually fell asleep last night having finally

worn down. I did cut his dosage down on the Kirkman vitamins and

all the other stuff and he did not scream all day.

Sandy

[Guest guest]

Risperdal for worked for us for the first 2 weeks only... then the

Dr wanted to up the dose and up the dose at every visit, and when we

did it made him 10 times worse than he was before we ever started

meds. We took him off and he was good. Better than before, and

better than on the meds.

[Guest guest]

Sandy, have you ever tried the Epsom salts bath? Sometimes I give Evan a bath in Epsom Salts and lavendar oil. It is very relaxing.

Betty

here are some sites on Epsom salts and autism

http://www.isn.net/~jypsy/epsom.htm

http://www.enzymestuff.com/epsomsalts.htm

[Guest guest]

Sandy, I think our kids do much better on minimum dosage of any med. Karac was very happy yesterday and really enjoyed gymnastics; I just pray the ped. psy. will come up with something that will help the TD. I have read of some treatments that have been helpful. I printed them out and plan to take them with me to the docs; however, he will probably disregard me as usual. Pat K

[Guest guest]

Betty,

I did do this last week but not a real noticeable difference. I probably

should be more consistent. I bought some lavender awhile back but seemed

to have lost it somewhere but that is a good idea. Thanks. I think the

kirkman vitamins maybe working because I lowered the dose and yesterday he

had numerous fits so it is back on a higher dose today and no fits thus

far - yea. But he is so hyper it is unreal.

Sandy

Sandy, have you ever tried the Epsom salts bath? Sometimes I give Evan a

bath in Epsom Salts and lavendar oil. It is very relaxing.

[Guest guest]

Betty,

I did do this last week but not a real noticeable difference. I probably

should be more consistent. I bought some lavender awhile back but seemed

to have lost it somewhere but that is a good idea. Thanks. I think the

kirkman vitamins maybe working because I lowered the dose and yesterday he

had numerous fits so it is back on a higher dose today and no fits thus

far - yea. But he is so hyper it is unreal.

Sandy

Sandy, have you ever tried the Epsom salts bath? Sometimes I give Evan a

bath in Epsom Salts and lavendar oil. It is very relaxing.

[Guest guest]

Hi

I have to agree with Christa on the aggression thing! My daughter is

the sweetest natured kid around! So much so that I'm worrying about

her going off to kindergarten next week.

I'm glad that is doing well in her cast. Good luck with the

2nd.....

Jacki

> My daughter is in her fist cast and doing great. We go

back

> to see Dr. next monday for the second cast. I have two

> questions that I am hoping someone might can help with.

>

> First, I have noticed that many of the children's cast come up

over

> the childs shoulders (giving a tank top look). The cast the Dr.

> applies does not do this - it comes up under the arms and

> goes straight across the chest. Does anyone know why the

difference?

>

> Second, I am on another group for another issue that has

and

> one of the children there has also been diagnosised with Scoliosis

> at 17 months. Her ortho mentioned to her that children with

> scoliosis have difficulty with agression when they are older.

Have

> any of you ever heard this before?

>

> Thanks in advance for any help.

>

> Mayes

[Guest guest]

O yeah

My son is sooooooo happy eveyone always says what a wonderful smile.... look ay the pics on the site.,...

I think that was kind of silly of the doc

maybe he means if your child has a negitive self image....but I really don't think that could be the case anymore (this day and age)

<christinehrph@...> wrote:

Hi

We will be there for our 1st consult on Mon also.

I am not in a cast yet so I am not sure about the difference.

Did your doc say why they tend to have aggression when they are older...or just said they do.......... a %?

What was her original curves? when was she diagnosed? Where are you from?

Sorry for the ? Even though I might have asked them before

Good luck in PA next week

Adan's momdmlmlm <dmayes1@...> wrote:

My daughter is in her fist cast and doing great. We go back to see Dr. next monday for the second cast. I have two questions that I am hoping someone might can help with.First, I have noticed that many of the children's cast come up over the childs shoulders (giving a tank top look). The cast the Dr. applies does not do this - it comes up under the arms and goes straight across the chest. Does anyone know why the difference?Second, I am on another group for another issue that has and one of the children there has also been diagnosised with Scoliosis at 17 months. Her ortho mentioned to her that children with scoliosis have difficulty with agression when they are older. Have any of you ever heard this before?Thanks in advance for any help.

Mayes

__________________________________________________

[Guest guest]

Thanks to all of you for your response. The same thing goes for our

EVERYBODY comments on her beautiful disposition. We feel

like God gave us our own little angel! She is not a push over but

she loves to smile and make you smile. I do not personally know the

child or parent that the doctor was commenting about - as I said we

spoke on another group - maybe this child is having issues??

She did imply that it comes at an older age - that is why I asked.

To answer your questions (and I don't mind - I am always

full of questions!) was put in her cast on July 13th. She

was 18 months and her curve measured 64 degrees. Doctor in

Erie, PA applied the cast. The measurement after the cast was

applied was 37 degrees and is SOOOOO happy in it. She is now

walking (like a drunken sailor but doing it!!) She made no attempt

at all to walk or stand until after she had been in the cast for

about three weeks. Now all she wants to do is stand! We know that

's curve progressed too far for total correction but if Dr.

can get it down below 30 and hold it there we will consider

it a success. (And don't think we are not praying and hoping for

more!!)

I hope that we get to meet on Monday.

Mayes

> My daughter is in her fist cast and doing great. We go

back

> to see Dr. next monday for the second cast. I have two

> questions that I am hoping someone might can help with.

>

> First, I have noticed that many of the children's cast come up

over

> the childs shoulders (giving a tank top look). The cast the Dr.

> applies does not do this - it comes up under the arms and

> goes straight across the chest. Does anyone know why the

difference?

>

> Second, I am on another group for another issue that has

and

> one of the children there has also been diagnosised with Scoliosis

> at 17 months. Her ortho mentioned to her that children with

> scoliosis have difficulty with agression when they are older.

Have

> any of you ever heard this before?

>

> Thanks in advance for any help.

>

> Mayes

>

>

>

[Guest guest]

It sounds like you got great correction. I hope my son gets some good news...Hope to see you Mon

We are staying overnight Sun and Mon

dmlmlm <dmayes1@...> wrote:

Thanks to all of you for your response. The same thing goes for our EVERYBODY comments on her beautiful disposition. We feel like God gave us our own little angel! She is not a push over but she loves to smile and make you smile. I do not personally know the child or parent that the doctor was commenting about - as I said we spoke on another group - maybe this child is having issues?? She did imply that it comes at an older age - that is why I asked.To answer your questions (and I don't mind - I am always full of questions!) was put in her cast on July 13th. She was 18 months and her curve measured 64 degrees. Doctor in Erie, PA applied the cast. The measurement after the cast was applied was 37 degrees and is SOOOOO happy in it.

She is now walking (like a drunken sailor but doing it!!) She made no attempt at all to walk or stand until after she had been in the cast for about three weeks. Now all she wants to do is stand! We know that 's curve progressed too far for total correction but if Dr. can get it down below 30 and hold it there we will consider it a success. (And don't think we are not praying and hoping for more!!)I hope that we get to meet on Monday. Mayes> My daughter is in her fist cast and doing great. We go back > to see Dr. next monday for the second cast. I have two > questions that I am hoping someone might can help with.> > First, I have noticed that many of the children's cast come up over > the childs shoulders (giving a tank top look). The cast the Dr. > applies does not do this - it comes up under the arms and > goes straight across the chest. Does anyone know why the difference?> > Second, I am on another group for another issue that has and > one of the children there has also been diagnosised with Scoliosis > at 17 months. Her ortho mentioned to her that children

with > scoliosis have difficulty with agression when they are older. Have > any of you ever heard this before?> > Thanks in advance for any help.> > Mayes> > >

[Guest guest]

Larry,

I honestly can't say how much you might gain from starting up the learning curve

on QEEG. I'm sure there are others on the list who use it and could give us a

better answer on hardware/software option and costs. I've had a number of folks

who've gone the other way, switching from doing Q's to just using the TLC Assess

and finding that they didn't lose much in terms of effective protocol selection.

I loved and used ThinkFast software, which provides a set of games that cover a

range of brain skills. Most kids liked it, the games were relatively quick and

the scoring made them nearly addictive. The program is relatively inexpensie

(or was), and I let kids play it before a session (some parents played during

the kids' sessions).

Pete

>

> From: " ce Starr " <lstarr@...>

> Date: 2004/11/02 Tue PM 03:46:29 EST

> " Van Deusen " <pvdtlc@...>

> Subject: questions

>

> Pete,

>

> Things are going well with my neurofeedback work. I particularly like

> integrating some of the little games and exercises. I have a couple of

> questions that I'd appreciate your perspective.

>

> 1) I have been thinking about getting into QEEGs. My practice is

> exclusively pediatric. Do you think that the investment in time and

> money to be able to do QEEGs would provide me with much more than your

> TLC assessment? Basically, would doing QEEGs be a useful part of my

> practice? If so, where/whom would you recommend for training?

>

> 2) Are there any cognitive training programs that would complement

> neurofeedback? I am somewhat familiar with Joe Sandford's Brain Train

> program. Lexia is now developing some software as well. What has been

> your experience with these types of programs in conjunction with NFB?

>

> Thanks for whatever input you can provide..

>

> ce Starr

>

>

[Guest guest]

Larry

I've decided to take the plunge and purchased a Mitsar Q system with

software. I was seduced at ISNR where every single person raved about

the utility of them. Also I'm a sucker for suffering. I'm going to my

first class on how to use the software this weekend and if you want

I'll keep you posted on how I'm doing. I plan to use it on kids and

adults that don't respond, that have brain injuries or seizures or

other weirdnesses, not routinely.

Hope you're doing well up North.

On Nov 3, 2004, at 6:46 PM, Van Deusen wrote:

Larry,

I honestly can't say how much you might gain from starting up the

learning curve on QEEG.  I'm sure there are others on the list who use

it and could give us a better answer on hardware/software option and

costs.  I've had a number of folks who've gone the other way, switching

from doing Q's to just using the TLC Assess and finding that they

didn't lose much in terms of effective protocol selection.

I loved and used ThinkFast software, which provides a set of games

that cover a range of brain skills.  Most kids liked it, the games were

relatively quick and the scoring made them nearly addictive.  The

program is relatively inexpensie (or was), and I let kids play it

before a session (some parents played during the kids' sessions).

Pete

>

> From: " ce Starr " <lstarr@...>

> Date: 2004/11/02 Tue PM 03:46:29 EST

> " Van Deusen " <pvdtlc@...>

> Subject: questions

>

> Pete,

>

>    Things are going well with my neurofeedback work. I particularly

like

> integrating some of the little games and exercises.  I have a couple

of

> questions that I'd appreciate your perspective.

>

> 1)  I have been thinking about getting into QEEGs.  My practice is

> exclusively pediatric.  Do you think that the investment in time and

> money to be able to do QEEGs would provide me with much more than

your

> TLC assessment?  Basically, would doing QEEGs be a useful part of my

> practice?  If so, where/whom would you recommend for training?

>

> 2)  Are there any cognitive training programs that would complement

> neurofeedback? I am somewhat familiar with Joe Sandford's Brain Train

> program.  Lexia is now developing some software as well. What has

been

> your experience with these types of programs in conjunction with NFB?

>

>    Thanks for whatever input you can provide..

>

> ce Starr

>

>

[Guest guest]

Hello to All,

My own experience wuth o3 IVs are in the archives.

300+ sessions.

I was a proponent of iv o3 in the beginning, but failed to improve long

term.

There are ( I believe ) several key elements to consider, that I did

not at that time.

1 The infection itself (hcv).

2 The duration of the infection ( 30 years )

3 The current, existing damage to the liver, and the ability to cope

with high oxidation and repair.

4 The amount of anti-oxidants needed to facilitate repair.

( I believe ) If you have the condition I apparently had, putting o3

directly into the bloodstream is like torching the grass to kill weeds.

If you are going to do it, you need a plan of repair before, during, and

after.

A person doing o3 ivs needs huge amouts of vitamin C to counter the

oxidation. ( We need lots of Vit C anyway, and ten times as much when

stressed.

Not that I am mega dosing Vit. C powder 30+ grams a day, rectal

insufflation evenings, liver cleanses every two weeks, and coffee

enemas, I am seeing muc improvement.

There were a couple improvements from that effort. One was bloodwork

showed the ggt at 13, down from a steady 33.

As a reference, people with a ggt ( overall liver function ) of 100+

are in a very serious condition.

But meawhile, my viral load went to 66,000, which is low, but I could

not sustain treatment on account of the oxidative stress.

I looked ten years older when I finished.

Now with the Vit C, I have recovered.

If I had it to do over, I would try to line up 1 Mega C and secondly

all the other known antioxidants

2 Liver cleanses ( first, and during)

3 Coffee enemas

4 No sugar

5 I would not worry that o3 and Vit C will cancell each others effects.

Do the Vit c all day, and the o3 at night.

[Guest guest]

INterestinga bout the Vitamin C. I know Saul recommends not to do

them one right after the other, but one could take it later in the

day. That's a high dose. What type of oral VItamin C do you use?

Do you do the traditional liver cleanse (olive oil;epsom salts etc)

or a milder one?

Also, just fyi, there is an oral glutathione (lipoceutical) available

from Wellness Pharmacy now (the Alabama one). They haven't done

double blind studies but in talking to the pharmacist at some length

I felt fairly confident that it really does get absorbed, not

digested. This might also be useful for your liver in fighting the

virus, and in detoxing from ozone, in fact, I plan to try it soon.

Also, ont he group ( group) they put

that device over the liver for hep C and say they get good results. I

have only skimmed the list so I don't even know what the device is

exactly.

> Hello to All,

> My own experience wuth o3 IVs are in the archives.

> 300+ sessions.

> I was a proponent of iv o3 in the beginning, but failed to improve

long

> term.

> There are ( I believe ) several key elements to consider, that I

did

> not at that time.

> 1 The infection itself (hcv).

> 2 The duration of the infection ( 30 years )

> 3 The current, existing damage to the liver, and the ability to cope

> with high oxidation and repair.

> 4 The amount of anti-oxidants needed to facilitate repair.

> ( I believe ) If you have the condition I apparently had, putting

o3

> directly into the bloodstream is like torching the grass to kill

weeds.

> If you are going to do it, you need a plan of repair before,

during, and

> after.

> A person doing o3 ivs needs huge amouts of vitamin C to counter the

> oxidation. ( We need lots of Vit C anyway, and ten times as much

when

> stressed.

>

> Not that I am mega dosing Vit. C powder 30+ grams a day, rectal

> insufflation evenings, liver cleanses every two weeks, and coffee

> enemas, I am seeing muc improvement.

>

> There were a couple improvements from that effort. One was

bloodwork

> showed the ggt at 13, down from a steady 33.

> As a reference, people with a ggt ( overall liver function ) of

100+

> are in a very serious condition.

> But meawhile, my viral load went to 66,000, which is low, but I

could

> not sustain treatment on account of the oxidative stress.

> I looked ten years older when I finished.

> Now with the Vit C, I have recovered.

>

> If I had it to do over, I would try to line up 1 Mega C and

secondly

> all the other known antioxidants

> 2 Liver cleanses ( first, and during)

> 3 Coffee enemas

> 4 No sugar

> 5 I would not worry that o3 and Vit C will cancell each others

effects.

> Do the Vit c all day, and the o3 at night.

[Guest guest]

Jill,

I used to think about the counter effects of Vitamin C/ o3 also;

so much that I undermined some treatment by putting one or the other

off, and then let something else interfere.

Now, I just figure that I'm going to think in terms of management,

instead of cure, and adopt a routine long term, and this one is working

well. I figure with rectal insufflation, the o3 reaches the liver,

enough to stimulate detox, and so forth, and the Vitamin C is doing an

excellent job from a different angle.

I tested about ten brands of Vitamin C powder, and decided that I don't

like the refined, " crystal " types- there's something that is just not

quite right with them- except one called Beyond C and it is pricey,

but worth it. You can find it on the web for $40 per 8 oz.

I get it from a doctor here in Md for $30.

It has a super absorption, and it is said that with distilled water

most enters the bloodstream.

I think Dr Bormann has some on her site but the price is way out

there.

Other C powders can be problematic concerning the GI tract, so you

have to take them on an empty stomach, and it helps to take hydrochloric

acid previously to help absorption.

Another help is to take NAC and alpha lipoic acid to help recycle the C

and detox the liver.

I did find a site that offers Twinlab powder for about $11.50 for 8 oz-

which is the best I've seen.

If anyone is interested, I'll look for the link.

I believe so much in the Vitamin C that I give it precedence over

everything else, by taking 3-5,000 mg at the top of each hour. It's made

a remarkable difference in my appearance as well.

In the beginning, I did have a lot of GI distress, but it seemed to

diminish after about a month,