Re: (unknown)

[Guest guest]

I am such a novice at all this but I would be afraid to let an inexperienced

person tutor my child. Boone went to a supposedly " educational " daycare and

ended up being strapped into a baby swing all day, everyday. They couldn't

handle him and I couldn't handle seeing him tied up, which is exactly what

it was. Maybe you'll find a pearl among the oysters, but I wouldn't count on

it. Good luck.

Oh and PLEASE do a background check. Children with disablities are the

perfect victims since they can't tell -- and the victimizers can be so very

charming.

Sissi

nitetrax@...

Kids' Page

http://home.isoa.net/~nitetrax/dillon.htm

(unknown)

>

> Hi Everyone. I have a few questions:

>

> I have put an ad out in the local paper for

> " tutor/therapists " to start our home program and OF

> COURSE got alot of calls of interested people. I want

> to call a few people in for an interview to get a

> better " view " of them. (None have had experience with

> special needs children which is kinda scary when

> dealing with behavior issues).

> 1-Could this be a bad /negative thing?

> 2-Have you all asked for personal information like

> Date of birth, social security nos. to do some sort of

> background on these " applicants " ?

> 3-When starting the program since my son has never

> seen these people, will I need to be in the room with

> him (which he would cling to me for life) or do I just

> leave him with this person (he will probably be scared

> to death and not do anything but scream)?

>

> Any help or suggestions would be GREAT!!!!!! Also, ANY

> BODY out there that knows of a therapist needing extra

> hours, I just need someone M, Tu and F mornings

> (8:30-11:30)......THANKS>

[Guest guest]

I screen out idiots over the phone ( " I know a lot about " autistic-ness " - true

story), then have potential candidates over to the house to see how they mesh

with Connor. We're all together at first, then I gradually fade out and go into

another room. I let the candidate play for about 15-30 minutes solo, whatever

Connor's comfortable with.

I also tape my tutors. If you're going to be out of the house, please tape them,

and make sure your candidates know they will be taped. My tutors are excellent,

and I trust them completely, but it keeps them on their toes knowing we're

recording the sessions. And anyone who's got a problem with that because they're

weirdos or whatever will probably not take a job where they're constantly

monitored.

I've hired two tutors who knew nothing about autism and they worked out great.

(One, in fact, is a local playwright.) I keep an open mind about people's

experience and background, as long as they're enthusiastic and intelligent

enough to learn the curriculum. The main point for me is personality -- an

excellent therapist with years of ABA means nothing if Connor doesn't like her

(which has happened before).

Hope that helps,

Lesli

Atlanta, GA

list-owner and mom to Connor, 4 y.o.

nitetrax@... wrote:

>

> I am such a novice at all this but I would be afraid to let an inexperienced

> person tutor my child. Boone went to a supposedly " educational " daycare and

> ended up being strapped into a baby swing all day, everyday. They couldn't

> handle him and I couldn't handle seeing him tied up, which is exactly what

> it was. Maybe you'll find a pearl among the oysters, but I wouldn't count on

> it. Good luck.

> Oh and PLEASE do a background check. Children with disablities are the

> perfect victims since they can't tell -- and the victimizers can be so very

> charming.

> Sissi

> nitetrax@...

> Kids' Page

> http://home.isoa.net/~nitetrax/dillon.htm

>

> (unknown)

>

> >

> > Hi Everyone. I have a few questions:

> >

> > I have put an ad out in the local paper for

> > " tutor/therapists " to start our home program and OF

> > COURSE got alot of calls of interested people. I want

> > to call a few people in for an interview to get a

> > better " view " of them. (None have had experience with

> > special needs children which is kinda scary when

> > dealing with behavior issues).

> > 1-Could this be a bad /negative thing?

> > 2-Have you all asked for personal information like

> > Date of birth, social security nos. to do some sort of

> > background on these " applicants " ?

> > 3-When starting the program since my son has never

> > seen these people, will I need to be in the room with

> > him (which he would cling to me for life) or do I just

> > leave him with this person (he will probably be scared

> > to death and not do anything but scream)?

> >

> > Any help or suggestions would be GREAT!!!!!! Also, ANY

> > BODY out there that knows of a therapist needing extra

> > hours, I just need someone M, Tu and F mornings

> > (8:30-11:30)......THANKS>

>

>

[Guest guest]

Hi Caroline...I would not rule out people with no experience. When I was 18

I took a job looking after a severely physically & mentally challenged boy &

I had no experience & was very young. I think I did a great job & stayed 2

yrs, loved it & the boy & family. We still keep in touch 14 yrs later! The

most important thing is personality. Watch them interact with your son...go

with your gut instinct ...regards..Annette

(unknown)

>

> Hi Everyone. I have a few questions:

>

> I have put an ad out in the local paper for

> " tutor/therapists " to start our home program and OF

> COURSE got alot of calls of interested people. I want

> to call a few people in for an interview to get a

> better " view " of them. (None have had experience with

> special needs children which is kinda scary when

> dealing with behavior issues).

> 1-Could this be a bad /negative thing?

> 2-Have you all asked for personal information like

> Date of birth, social security nos. to do some sort of

> background on these " applicants " ?

> 3-When starting the program since my son has never

> seen these people, will I need to be in the room with

> him (which he would cling to me for life) or do I just

> leave him with this person (he will probably be scared

> to death and not do anything but scream)?

>

> Any help or suggestions would be GREAT!!!!!! Also, ANY

> BODY out there that knows of a therapist needing extra

> hours, I just need someone M, Tu and F mornings

> (8:30-11:30)......THANKS>

>

> __________________________________________________

>

[Guest guest]

After moving to TX, (job relo 3 yrs. ago) i was told that there would be a

7-8 year wait for MH/MR services.....I didn't bother. Would love to have the

services back that we had in PA. I agree that TX is the worst for any sort

of services.

Meg Houston

[Guest guest]

Do other states actually pay for ABA and other therapies done at home? I've

never met anyone(from any state) who receives funds for that. I have spoken with

different people who get ABA at school(though often times will not refer to it

that way) and some of these people are Texans. Please clarify...

And to answer Tammi's question--we do have funding through MHMRA. Both of my

boys receive $3600.00/yr. of In Home Family Support funds(we use this to pay our

ABA therapist) Ben waited about 1.5 or 2 years before receiving this--Joe

received it immediately after his diagnoses. We also get reimbursed up to

$5.00/hr for respite care(which is what I pay a babysitter to come--am I

cheap???) therefore, all our babysitting is FREE. That service was

immediate--no waiting. We are also on something called Home Community Services

waiting list (Ben for about 3 yrs. and Joe for about 1.5 or 2.) So those are the

services provided by our state agency--what do your think--should I move??

a

T

(unknown)

> Am I understanding correctly? Does Texas have to pay

> for in home supports? For example, ABA or AIT? If

> so, I am amazed. Also, how cooperative do you feel

> the school districts are in dealing with Autism? Is

> there any place in Texas better than another for

> Dr.'s, supports etc. And finally, is there funding

> for families with children with autism, and how

> easy/difficult is it to apply, waiting lists?

>

> Thanks,

> Tammie

>

>

> __________________________________________________

>

[Guest guest]

I hate hearing things like this because I know people personally who have not

ever bothered applying after hearing how long the waiting lists are. WE didn't

wait that long (7-8 years) and we're receiving services every year--granted

those services may not compare favorably with other states but at least it's

something!! Please--always get your name on EVERY list no matter what you

hear--it can't hurt.

a

Re: (unknown)

After moving to TX, (job relo 3 yrs. ago) i was told that there would be a

7-8 year wait for MH/MR services.....I didn't bother. Would love to have the

services back that we had in PA. I agree that TX is the worst for any sort

of services.

Meg Houston

[Guest guest]

In a message dated 8/19/01 12:00:31 PM Central Daylight Time, jzsell@...

writes:

> We also get reimbursed up to $5.00/hr for respite care(which is what I pay a

>

Did I understand correctly that this respite care is in addition to the $3600

per year through In Home and Family Support or is it part of it? Or is it

from another agency?

Thanks,

[Guest guest]

In a message dated 8/19/01 12:10:30 PM Central Daylight Time,

Llannigan@... writes:

> i was told that there would be a

>

that seems pretty extreme. Most people I know had to wait a year at the

most. Who told you about that wait? You might look into it again.

[Guest guest]

BE sure to be on the waiting list for CLASS through DHS and MRLA thorough

MHMR> It is the best.

(unknown)

>

>

> > Am I understanding correctly? Does Texas have to pay

> > for in home supports? For example, ABA or AIT? If

> > so, I am amazed. Also, how cooperative do you feel

> > the school districts are in dealing with Autism? Is

> > there any place in Texas better than another for

> > Dr.'s, supports etc. And finally, is there funding

> > for families with children with autism, and how

> > easy/difficult is it to apply, waiting lists?

> >

> > Thanks,

> > Tammie

> >

> >

> > __________________________________________________

> >

[Guest guest]

I second a's encouragement to get on the waiting list. County

folks are notorious for mis-stating info on services available and who

qualifies. Push for written info on what is available and talk to other

families in your area about what they are getting.

Gaylen

[Guest guest]

Thanks for clearing all that up for me. We are signed up for both of those

services(CLASS and HCS) I'm running your info. off and putting it in my file as

I'm typing! Geez, it takes a rocket scientist to keep all this stuff straight!!

Thanks,

a

Re: (unknown)

MRLA is just another name for HCS in some counties that are doing a

pilot program. In order to qualify for HCS, the individual must have

mental retardation as a primary diagnosis, but can certainly have

autism also. It is mostly for group home placement, but also pays

for attendant care and some therapies. I've heard CLASS is better

for therapy, but does not pay for group home placements, MRLA/HCS is

needed for group home placement, but does not pay as well for

therapies. We have been on the CLASS list for about 7 years and have

not made it on. I doubt my son will qualify for MRLA/HCS as we have

documented IQ's in the normal range, but we were encouraged to get on

the list by MHMR anyway. Jill

>In a message dated 8/20/01 10:28:48 AM Central Daylight Time,

>stlevine@... writes:

>

>

> > MRLA:this is a medicade waiver program that only considers the child's

> > income, which should be zero, and then they get medicade and a lot of

other

> >

>

>I thought that was called MDCP and was through the Department of Health? I

>have never heard of MRLA. Anyone have any luck getting it for an autistic

>child? My son is on MDCP waiting list, but I have heard that it is mostly

>for children who need nursing care and that they usually will not give it to

>autistic children without an additional medical diagnosis. Anyone know

>different?

>Thanks,

>tracy

>

>

>

[Guest guest]

Elsie,

Check to see if your MHMRA has a UCP(United Cerebral Palsy) division under

the " umbrella " of MHMRA. That is where our respite service money comes

from.(and no, your child does not need a diagnosis of Cerebral Palsy to qualify)

I just want to make sure this is not a case of them just not sharing ALL

information with you!

a

Re: (unknown)

>

> The respite care funds are also through MHMR and in addition to the

3600.00 In Home Family Support funds. These are 2 separate services

provided by MHMR.

> a

Another example of how MHMR varies from county to county. We were just

approved for the $3600.00, but were told that the ABA training and the

respite we requested would have to come out of this total amount. It's in

Grayson County. I would love to get more, but after reading some of the

posts regarding this, I'm feeling pretty lucky with this )

Elsie (in North Texas - Denison; who is still trying to figure out how to

get a letter to MHMR on insurance denial for ABA, without screwing

everything up!)

[Guest guest]

We were told that the child must be " At Risk " . We are

trying to prevent our child from getting into the at

risk category. This means they will not apply for

non-ed funds for us.

Thanks,

Bancale

--- Steve Levine wrote:

> Noned funds must be requested by the district, Some

> districts don't want to

> hassle with it, but they should apply for it. It is

> there to deliver

> respite and in home training to kids with autism.

> Demand it.

>

> (unknown)

> >

> >

> > > Am I understanding correctly? Does Texas have

> to pay

> > > for in home supports? For example, ABA or

> AIT? If

> > > so, I am amazed. Also, how cooperative do you

> feel

> > > the school districts are in dealing with

> Autism? Is

> > > there any place in Texas better than another

> for

> > > Dr.'s, supports etc. And finally, is there

> funding

> > > for families with children with autism, and

> how

> > > easy/difficult is it to apply, waiting lists?

> > >

> > > Thanks,

> > > Tammie

> > >

> > >

> > >

> __________________________________________________

> > >

[Guest guest]

Becky,

i am 37 and have this disease. just like everybody

else who has responded to your e-mail already, i

really wish your little did not have to go thru

this. i don't know much about stills and children, but

if you ever need a friend to just yell at i can do

that. please keep us posted on his progress and make

sure you take care of yourself as well. i have two

boys and remember well times i would make myself sick

because i was so wrapped up in everything that they

were doing. you won't e any good to him if your down

as well.

Aloha,

Bridget

__________________________________________________

[Guest guest]

Hey Jen,

I did some experimenting with the mtx. I would delay taking my dose

(15mg)for a couple of days. I then would take the dose at night before bed.

For two days after taking the dose, I felt nausea and extreme fatigue. I

dropped the mtx from 15mg to 5mg three weeks ago and stopped cold turkey

two weeks ago. I figured if I was going to feel like shit, it wouldn't be

because of the medication. I am a little tired everyday about two in the

afternoon, but get up at 5 AM everyday and go to bed at 11 or12 PM. I think

I am tired first because my body has to get used to living with no meds and

secondly because I dont get enough sleep. I am as active as I was before the

original symptoms hit ( baseball, basketball, digging ditches, hard labor,

operating heavy equipment, etc). I attribute soreness now to weakness in my

muscles, which atrophied as I lost 30 pounds in two weeks when the " stills "

first hit me. Hopefully physical therapy will remedy that.

Hope this info helped you a little.

Take Care.

Y

(unknown)

>

>

> > Hello

> >

> > This is Becky again. My son was diagnosed Sept 1st and started on

> > 30mg of Pred a day. Yesterday his temp went up to 103.2 and today it

> > went to 102.1 and was accompanied with the rash. The doc wants to up

> > his does to 40mg a day starting tonight. Has this happened to anyone

> > else or your children? I just wish I knew what caused all of this,

> > where it came from, and why can't he get rid of it!!!!! Isn't 40mg a

> > day a lot??? I thought he would be on the pred for awhile then it

> > would go away. I guess I haven't accepted it yet, maybe I am still

> > in denial. My husband wants to have the water tested for bacteria,

> > he read that bacteria causes the onset of still's. Has anyone else

> > heard of that???

> > In denial in NY.

> > Becky

> >

> >

> >

> >

[Guest guest]

HI ,

Let me say first off that if it wasnt for my doctor, I might have died. I

am in no way bashing all doctors. Although I may have a good one, I know

there are plenty of other people that aren't so lucky.

As far as searching for a cure for the disease, I believe that this illness

as with alot of others including cancers ,begins festering in the body long

before symptoms are seen . When the " dragon " gets strong enough it waits

for the bodies defenses to weaken through excess stress ,etc, and then

slams the immune system. My strong belief is that we need to give our body

every chance to heal itself. There is a level of health in all of us

whereby the

body will heal itself.

Some people know what is optimum for their body and some dont. I was one

who did not! Before I went to the homeopath, I thought I was helping my

body by eating alot of pasta, seven grain bread,etc. Well my homeopath

informed me that as a blood type A , any form of wheat blocks the receptors

in the cells that tell the pancreas when the sugar level is ok. The

pancreas which never receives the message back from the cells that the

glucose level is ok, continues to pump out insulin. Devastating for the

pancreas to continually manufacture insulin even when its not needed. This

is just one example of my ignorance. Education is valuable in realizing how

to give your body what it needs for optimum functioning. While certain

thing are not known other things are obvious. For example the body needs a

lot of water to properly function. I know people who hardly drink any water

and reach for a soda or iced tea every time they get thirsty, and cookies

or candy for snacks.

It is vital that those of us diagnosed with stills not only strengthen our

body through vitamins but to be VERY disciplined in what we eat!

I was diagnosed with stills after three weeks(1 home, two in the hospital)

of 106 fevers and intense muscle pain back in January of this year. I am now

incredibly and to the credit of my homeopath off of ALL medication. By the

way , she was very careful to advise me to GRADUALLY come off the meds.

As far as what causes stills, my homeopath believes that this disease goes

deeper than just the resultant symptoms. Ones past is very important in

determining why the immune gets slammed so hard. My past includes getting

the mumps twice last time when I was 19(ouch), getting struck by lightning,

and an extreme allergy to poison ivy, among other things.

My homeopath uses " Electroacupuncture according to Vol " . I think this is

common but the expertise comes in her interpretation of the information she

gets.

Take Care

(unknown)

> >> >

> >> >

> >> > > Hello

> >> > >

> >> > > This is Becky again. My son was diagnosed Sept 1st and started

on

> >> > > 30mg of Pred a day. Yesterday his temp went up to 103.2 and

today

> >it

> >> > > went to 102.1 and was accompanied with the rash. The doc wants

to

> >up

> >> > > his does to 40mg a day starting tonight. Has this happened to

> >anyone

> >> > > else or your children? I just wish I knew what caused all of

> >this,

> >> > > where it came from, and why can't he get rid of it!!!!! Isn't

> >40mg a

> >> > > day a lot??? I thought he would be on the pred for awhile then

it

> >> > > would go away. I guess I haven't accepted it yet, maybe I am

> >still

> >> > > in denial. My husband wants to have the water tested for

> >bacteria,

> >> > > he read that bacteria causes the onset of still's. Has anyone

> >else

> >> > > heard of that???

> >> > > In denial in NY.

> >> > > Becky

> >> > >

> >> > >

> >> > >

> >> > >

[Guest guest]

Hi Barb,

I've had the symptoms for four years now. The last year they have been intense.

I was finally diagnosed in July.

> Stillsdisease babsinsl@...: Wed, 12 Sep 2001 15:11:37

EDT

>Reply-To: Stillsdisease

> Re: (unknown)

>,

> Just curious, how long have you had Stills? Perhaps you've said before

>but if so I missed it. Thanks, Barb

>

>

>

[Guest guest]

Dear ,

I am truly happy that the treatment you are using is working for you. I

admire your strength and courage.

This disease as well as others is so strange. One form of treatment might

help one patient yet almost kill another patient on the same med. It is of

course because we are all so different and are diseases are so different.

I am definitely interested in knowing how your treatment is going. I

support you 100%. Although for now I don't believe this sort of treatment

would help me. I hope this doesn't offend you.

I Wish You Continued Good Health!

Love,

(unknown)

> >> >> >

> >> >> >

> >> >> > > Hello

> >> >> > >

> >> >> > > This is Becky again. My son was diagnosed Sept 1st and

started

> >on

> >> >> > > 30mg of Pred a day. Yesterday his temp went up to 103.2 and

> >today

> >> >it

> >> >> > > went to 102.1 and was accompanied with the rash. The doc

wants

> >to

> >> >up

> >> >> > > his does to 40mg a day starting tonight. Has this happened

to

> >> >anyone

> >> >> > > else or your children? I just wish I knew what caused all

of

> >> >this,

> >> >> > > where it came from, and why can't he get rid of it!!!!!

Isn't

> >> >40mg a

> >> >> > > day a lot??? I thought he would be on the pred for awhile

then

> >it

> >> >> > > would go away. I guess I haven't accepted it yet, maybe I

am

> >> >still

> >> >> > > in denial. My husband wants to have the water tested for

> >> >bacteria,

> >> >> > > he read that bacteria causes the onset of still's. Has

anyone

> >> >else

> >> >> > > heard of that???

> >> >> > > In denial in NY.

> >> >> > > Becky

> >> >> > >

> >> >> > >

> >> >> > >

> >> >> > >

[Guest guest]

Thanks for the support. How do you know it won't work for you unless you've

tried it? I always believe in finding out for myself, no matter what someone

else says. I believe this will work for you and all the other stilligans. I

was skeptical at first myself, but now I'm healthy because I took the risk. I

realize that unless a doctor suggests this to you it will not seem like a

credible treatment. My Rhuemy laughed at me, but he still prescribed it. He

said he had heard it helped people with Rheumatoid arthritis, but not Stills.

That he had seen no tests that showed it helped or didn't help with Stills.

Well now I'm able to laugh now too because I'm not in pain anymore. I'm not

trying to push this on anyone! I'm simply telling my story with this disease

and what helped me. I can't help but respond though to all of you who haven't

tried this and think it won't work for you. I hope my message will someday help

someone else with this disease willing to step out of th!

e norm and try this therapy. If somebody else tries this therapy for the three

years that they recommend and it doesn't help, then I will shut up. But until

then I will tell my story to anybody willing to listen.

> <Stillsdisease > " " Date: Sat, 15 Sep 2001

17:21:04 -0800

>Reply-To: Stillsdisease

> Re: Re: (unknown)

>Dear ,

>

>I am truly happy that the treatment you are using is working for you. I

>admire your strength and courage.

>

>This disease as well as others is so strange. One form of treatment might

>help one patient yet almost kill another patient on the same med. It is of

>course because we are all so different and are diseases are so different.

>

>I am definitely interested in knowing how your treatment is going. I

>support you 100%. Although for now I don't believe this sort of treatment

>would help me. I hope this doesn't offend you.

>

>I Wish You Continued Good Health!

>

>Love,

>

>

> (unknown)

>> >> >> >

>> >> >> >

>> >> >> > > Hello

>> >> >> > >

>> >> >> > > This is Becky again. My son was diagnosed Sept 1st and

>started

>> >on

>> >> >> > > 30mg of Pred a day. Yesterday his temp went up to 103.2 and

>> >today

>> >> >it

>> >> >> > > went to 102.1 and was accompanied with the rash. The doc

>wants

>> >to

>> >> >up

>> >> >> > > his does to 40mg a day starting tonight. Has this happened

>to

>> >> >anyone

>> >> >> > > else or your children? I just wish I knew what caused all

>of

>> >> >this,

>> >> >> > > where it came from, and why can't he get rid of it!!!!!

>Isn't

>> >> >40mg a

>> >> >> > > day a lot??? I thought he would be on the pred for awhile

>then

>> >it

>> >> >> > > would go away. I guess I haven't accepted it yet, maybe I

>am

>> >> >still

>> >> >> > > in denial. My husband wants to have the water tested for

>> >> >bacteria,

>> >> >> > > he read that bacteria causes the onset of still's. Has

>anyone

>> >> >else

>> >> >> > > heard of that???

>> >> >> > > In denial in NY.

>> >> >> > > Becky

>> >> >> > >

>> >> >> > >

>> >> >> > >

>> >> >> > >

[Guest guest]

,

While I was in the hospital I talked to my Docs about

the Antibiotic therapy. My rheumy is willing to try it

but not just now, since they have changed and added so

many new meds. My other problem is that I am very

allergic to TCN. I go into anaphalactic shock. I

almost died when I was five. She is sceptical, but my

Doc said that she will see what other antibiotics Dr.

Brown suggests. She wants to do this whole thing in a

very controlled way. When we thought I might get back

to Texas she really wanted me to wait until I was

settled there. Now, who knows? I have had this thing

for so long I know it will take me much longer to

respond to the therapy, but what the hell. What's one

more pill? I just wanted to say thanks for caring

so much about us. You believe this will help us and

even though I know you've met with some resistance you

have still cared enough to not give up on us.

Bridget

__________________________________________________

Terrorist Attacks on U.S. - How can you help?

Donate cash, emergency relief information

http://dailynews.yahoo.com/fc/US/Emergency_Information/

[Guest guest]

,

As I said before I am interested in trying this EXCEPT that my rheumologist

is not as eager as I am. I will try again in October when I see him again. How

long have you been feeling good for? How long had you felt bad for? Have you

had periods of " remission " before this? Sorry for all the questions but the

more info. I give my rheumologist the better! I wish you continued good health!

Jen

(unknown)

>> >> >> >

>> >> >> >

>> >> >> > > Hello

>> >> >> > >

>> >> >> > > This is Becky again. My son was diagnosed Sept 1st and

>started

>> >on

>> >> >> > > 30mg of Pred a day. Yesterday his temp went up to 103.2 and

>> >today

>> >> >it

>> >> >> > > went to 102.1 and was accompanied with the rash. The doc

>wants

>> >to

>> >> >up

>> >> >> > > his does to 40mg a day starting tonight. Has this happened

>to

>> >> >anyone

>> >> >> > > else or your children? I just wish I knew what caused all

>of

>> >> >this,

>> >> >> > > where it came from, and why can't he get rid of it!!!!!

>Isn't

>> >> >40mg a

>> >> >> > > day a lot??? I thought he would be on the pred for awhile

>then

>> >it

>> >> >> > > would go away. I guess I haven't accepted it yet, maybe I

>am

>> >> >still

>> >> >> > > in denial. My husband wants to have the water tested for

>> >> >bacteria,

>> >> >> > > he read that bacteria causes the onset of still's. Has

>anyone

>> >> >else

>> >> >> > > heard of that???

>> >> >> > > In denial in NY.

>> >> >> > > Becky

>> >> >> > >

>> >> >> > >

>> >> >> > >

>> >> >> > >

[Guest guest]

, as I said before I am interested in trying this EXCEPT that my

rheumologist is not as eager as I am.

Hello Jen, as I said before I had to talk my Rhuemy into this also. But there

are doctors out there Rheumatologists and regular doctors who specialize in this

therapy.

How long have you been feeling good for?

I’ve been better since I started the therapy 5 weeks ago this Sunday. At first

I still had to take the Prednisone, but now I’m off that too.

How long had you felt bad for? Have you had periods of " remission " before this?

I started getting worse severe rashes and joint pain again, one year ago. This

all started 4.5 years ago. Typical of Stills, no doctor knew what it was. I

was sick of being sent home without help. I thought it seemed most like Lyme

disease, so I asked my doctor to treat me. He had already tested me without

testing positive. He also didn’t think that’s what it was but that it wouldn’t

hurt to treat me anyways. You’ll never guess what he prescribed. Yep

Tetracycline, and I got better in 3 weeks. I went from barely being able to

walk to perfect health. I was 26 years old, strong as an ox, and crying in my

bed because I couldn’t go anywhere with my family, because it hurt too much. I

was so sure that’s what I had that I didn’t continue looking into what I

actually might really have. I went to see a rheumatologist right after I got

better and he said he didn’t think I had Lyme disease, and that he would like to

do more tests. I am sorry I didn’t. A year later I starte!

d getting the rashes again, but they didn’t bother me because they stayed mostly

under my clothes where nobody could see them. Then two years later came the

severe rashes and severe joint pain. At first I wanted more Tetracycline, but

no doctor would give me it unless I tested positive for Lyme. I just got worse

and worse till I couldn’t work anymore. Finally I was diagnosed in July and a

few weeks later I started myself on Dr. Browns Tetracyline protocol. I’ve been

getting better every since that time.

Bridget wrote, She is skeptical, but my Doc said that she would see what other

antibiotics Dr. Brown suggests.

Dear Bridget,

There are other forms of Tetracycline, such as Minocycline, and Doxycyclene.

There is a thing called a Herxiemer reaction when you first start this kind of

therapy, so I recommend you stay on your other meds until you notice you start

feeling better. Minocycline is the only one I think you can take that will not

affect the MTX. I didn’t keep taking that though, as I found out it is an

Immune system suppressor. But that’s me, if I had this disease for many years I

would stay on it until I got better no matter what. Thank you so much for the

words of encouragement. I really do care about all of ya’ll. I want us all to

get better, and if it didn’t give me such drastic responses I wouldn’t even

mention it. So don’t wait if you can help it. I am So sorry about your tickets

to Texas, Like you said there’s probably a good reason why. I always take

roadblocks as a sign.

> <Stillsdisease > " Jen & Doug Pickard " Date:

Sun, 16 Sep 2001 18:31:50 -0700

>Reply-To: Stillsdisease

> Re: Re: (unknown)

>,

> As I said before I am interested in trying this EXCEPT that my rheumologist

is not as eager as I am. I will try again in October when I see him again. How

long have you been feeling good for? How long had you felt bad for? Have you

had periods of " remission " before this? Sorry for all the questions but the

more info. I give my rheumologist the better! I wish you continued good health!

Jen

> (unknown)

> >> >> >> >

> >> >> >> >

> >> >> >> > > Hello

> >> >> >> > >

> >> >> >> > > This is Becky again. My son was diagnosed Sept 1st and

> >started

> >> >on

> >> >> >> > > 30mg of Pred a day. Yesterday his temp went up to 103.2 and

> >> >today

> >> >> >it

> >> >> >> > > went to 102.1 and was accompanied with the rash. The doc

> >wants

> >> >to

> >> >> >up

> >> >> >> > > his does to 40mg a day starting tonight. Has this happened

> >to

> >> >> >anyone

> >> >> >> > > else or your children? I just wish I knew what caused all

> >of

> >> >> >this,

> >> >> >> > > where it came from, and why can't he get rid of it!!!!!

> >Isn't

> >> >> >40mg a

> >> >> >> > > day a lot??? I thought he would be on the pred for awhile

> >then

> >> >it

> >> >> >> > > would go away. I guess I haven't accepted it yet, maybe I

> >am

> >> >> >still

> >> >> >> > > in denial. My husband wants to have the water tested for

> >> >> >bacteria,

> >> >> >> > > he read that bacteria causes the onset of still's. Has

> >anyone

> >> >> >else

> >> >> >> > > heard of that???

> >> >> >> > > In denial in NY.

> >> >> >> > > Becky

> >> >> >> > >

> >> >> >> > >

> >> >> >> > >

> >> >> >> > >

[Guest guest]

Are you looking for families doing Lovaas or ABA intensive programs only or

are you also interested in families who use other intensive methods like

NACD, Son-Rise and floortime?

Gaylen

[Guest guest]

Hi Caroline!

I hope all is well! What an interesting article! Have you looked into

getting it?

Have you had any luck with your insurance?

How is you little one?

Take Care,

[Guest guest]

At 04:15 AM 11/18/2003 +0000, you wrote:

>Can someone tell me if it is possible to have lipodystrophy without

>having HIV/AIDS?

Depends on how it is defined. Technically, it means a LOSS of fat, usually

to the periphery. However, in the context of ARV-generated side effects, it

is a term that encompasses fat loss, central adiposity (fat developing

around the organs), increased cholesterol, increased triglycerides. Any one

or all of these can occur in anyone and arise as a result of diverse

etiologies, some well characterized, some not.

M.