Re: Digest Number 1339

[Guest guest]

> I would be interested in this also. My son suffers from this really bad and

> would like to get him off of the antibiotics. I also have but not as bad

> as he.

My son also suffers from this. Please post to the list or post directly to

me. Also where would I find colloidal silver?

>

>

[Guest guest]

Hello All

My son Zach was diagnosed with JRA a couple of months ago. So far he is

having trouble in his ankle and wrists. We have out first appointment with

the Ruematoid Dr

but he cant see him until the end of May. My problem is Zach is having chest

pains and his Pediatrician says it is probably the arth in his chest. He is 9

years old and sometimes he looks so bad like he is having a heart attack. All

we were told to do is give him Motrin. Is there hope? I don't know anything

about JRA (the Dr gave us no information) except what I am getting off the

internet. I have been lurking for a while and I have to admit alot of what

you guys say is greek to Me . I guess I am looking for some help and

appreciate all you can tell me.

Angel

Mom to Zach (9)

feel free to email me personally if you want

[Guest guest]

Great news ! We all breath a sigh of relief with you!

Donna

[Guest guest]

Angel

my daughter 14 has poly JRA she also has the chest pains

the doctor told me that the ribs have arthritis and its that

and thats what causeing the pain sometimes hard to breathe

but to be on the safe side they do a EKG on her

and monitor her

also make sure your doctor is doing the same

have xrays done and the EKG

Robbin

PS also could be muscle spasms

please get it checked if you have to go to the ER

[Guest guest]

Hi the same thing happened to us,our pediatrician knew what had but could

not get him in for a whole month, is systemic and he was very sick and we

thought he was dying.I dont know how far you are from the childrens hospital,but

I took to my nieces pediatrician in Nashville where all the pediatricians

are affiliated with Vanderbilt,and the pediatrician called the rheumy,and said

hey,the parents are terrified they are here for a second oppinion,hes really bad

and needs to be seen,we got in the next day.It turned out to be a HUGE

communication problem between our ped and the rheumy.The rheumy supposedly didnt

know had the cyclic fevers or eat up with rheumatoid rash.Keep pushing the

pediatrician,take him somewhere else,try to call the rheumy

yourself,beg,pleed,the sooner he starts treatment the better.The pain in his

chest is probably the connective tissues between the ribs inflamed.If you ever

feel you cant wait anymore please take him to an E.R at a childrens hospital,and

tell them what he supposedly has and that the rheumatoligist wont see him until

May.If you take him to a regular hospital they are liable to say " he has

what? " Good luck to you,keep fighting and stay in contact with us,we are here to

help.Try hot baths for now,atleast its something. Becki and 3systemic

Bambieyez40@... wrote:

> Hello All

>

> My son Zach was diagnosed with JRA a couple of months ago. So far he is

> having trouble in his ankle and wrists. We have out first appointment with

> the Ruematoid Dr

> but he cant see him until the end of May. My problem is Zach is having chest

> pains and his Pediatrician says it is probably the arth in his chest. He is 9

> years old and sometimes he looks so bad like he is having a heart attack. All

> we were told to do is give him Motrin. Is there hope? I don't know anything

> about JRA (the Dr gave us no information) except what I am getting off the

> internet. I have been lurking for a while and I have to admit alot of what

> you guys say is greek to Me . I guess I am looking for some help and

> appreciate all you can tell me.

>

> Angel

> Mom to Zach (9)

>

> feel free to email me personally if you want

>

>

>

>

>

[Guest guest]

Angel

my daughter Tabitha who is 17 has poly jra and was diagnosed back in 89'.

Anyways she was having chest pains..kept saying it felt like there was a

rock in her chest. So i took her to our regular hospital and they contacted

her rheumy..it was due to the arthritis..but every child is different. If it

keeps bothering him..get it checked right away..or keep calling the rheumy

and bugging him/her maybe they will move the appt. up..you have that right.

You said how hard it is to understand what is wrote about arthrits..well i

have been dealing with it since like i said..89' and it is something i will

never understand..once your child gets on the right meds..can take along

time..to find the right ones..everything will be okay..some kids even go

into remission(the arthritis goes to sleep) but I will be honest it is a

rollercoaster ride in its self.

If you ever have any questions about any of the postings..just ask..we don't

bite..lol.

good luck and welcome,

karen(tab17..poly)

From: Bambieyez40@...

Reply-

Subject: Re: Digest Number 1339

Date: Mon, 25 Mar 2002 06:57:24 EST

Hello All

My son Zach was diagnosed with JRA a couple of months ago. So far he is

having trouble in his ankle and wrists. We have out first appointment with

the Ruematoid Dr

but he cant see him until the end of May. My problem is Zach is having

chest

pains and his Pediatrician says it is probably the arth in his chest. He is

9

years old and sometimes he looks so bad like he is having a heart attack.

All

we were told to do is give him Motrin. Is there hope? I don't know anything

about JRA (the Dr gave us no information) except what I am getting off the

internet. I have been lurking for a while and I have to admit alot of what

you guys say is greek to Me . I guess I am looking for some help and

appreciate all you can tell me.

Angel

Mom to Zach (9)

feel free to email me personally if you want

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Hi Angel:

My son was just recently diagnosed with sever polyarticular JRA and anklosing spondilitis. I know how you feel about not knowing, i hated waiting for that first appt., so many questions. Anyway, my son also has complained of chest pains really bad before. I was told it is because of the arthritis he has chest pains, I am a nurse, so i was able to take his blood pressure and listen to his heart when he complains, but i still worry. Chest pain is nothing to fool with, I would take him to the ER next time he has it, just to be sure, no one can say for sure its due to the JRA, because he hasnt even seen the rheumy yet. I would call the rheumy and ask to be put on a cancellation list, that way if someone cancels u can get in sooner than May, but keep pushin these docs, he is your son, and moms know best!!!

Tina (mom of 7yr old )

Bambieyez40@... wrote: Hello All My son Zach was diagnosed with JRA a couple of months ago. So far he is having trouble in his ankle and wrists. We have out first appointment with the Ruematoid Drbut he cant see him until the end of May. My problem is Zach is having chest pains and his Pediatrician says it is probably the arth in his chest. He is 9 years old and sometimes he looks so bad like he is having a heart attack. All we were told to do is give him Motrin. Is there hope? I don't know anything about JRA (the Dr gave us no information) except what I am getting off the internet. I have been lurking for a while and I have to admit alot of what you guys say is greek to Me . I guess I am looking for some help and appreciate all you can tell me. AngelMom to Zach (9)feel free to email me personally if you want

[Guest guest]

When I first tried to get a rheumy appt., everywhere I called no appts were available for a month. I got very insistent ( a little hysterical) "This is a little child, and she can't walk. I need to get her in ASAP." You'd be surprised at how well that works. The two doctors I'd called both called me back and said they could get me in at once - one the next day and one a few days later. Be pushy!!!

Diane (, 2, pauci)

[Guest guest]

Hello...

Someone from the burg, PA area wrote a posting about thei doc at

PABetterHealth.com. I checked the site out looks great....can you please tell

me if the doctor you go to does stool samples, and if so, what the cost is?

Thanks in advance

kelli frantik

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

[Guest guest]

Hi there...yes, Doctor Sullivan is actually in

Mechanicsburg by Book of the Month club. He did his

test by drawing blood. (I guess they grow the sample

and see what the yeast antibody turns out to be.) The

test they ran was called the candida antibody. Mine

was 211 and I guess it's supposed to be <= 150.

This test I believe ran $80.00 but I thing most

insurance companies cover him and his tests because he

is an MD. You could also call his office and see if

they do test by stool sample and ask them if they

accept your insurance prior to a first visit. Are you

in burg, too ?? I'd love to talk to you more

and find out your candida or suspected candida

history...I just found out this May (3 months ago)

about it.

Sandy Bender (sandyblue2002@...)

--- kelli frantik <legacybears@...> wrote:

>

> Hello...

> Someone from the burg, PA area wrote a posting

> about thei doc at PABetterHealth.com. I checked the

> site out looks great....can you please tell me if

> the doctor you go to does stool samples, and if so,

> what the cost is?

> Thanks in advance

> kelli frantik

>

>

>

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

>

[Guest guest]

Hi,

I am the mother of an 11 year old boy who is " fully recovered " and does not

meet criteria for ASD or L.D. or attention D. Syndrome. He is a typical

thriving sweet young boy who doesn't even realize how many hundreds of other

children he has been able to help over the years. I am an ABA Behavior Parent

Mentor

Resource Consultant, PMRC and throughout the final year of his program began

working in the field as a Lead therapist and thus blossomed into consulting

with families in several states. When my son was just at the last year of his

program I wished I could connect with another parent who has been where we are

and would be willing to mentor our team and program. The mother who was there

for us every day fueled our wills for the remaining year left. As far as the

topic eye-contact I am rich in resources of a myriad of ways to teach this

skill. Since the word " Mentor " is a sought after component to their child's

overall

learning acquisition I will review with all of you how we were able to shape

over the years mastering the concept of look at me or eye-contact.

ny eventually will comprehend what and why looking at people is essential

to learning. It is a drill that needs to be watered every day until it grows

into a tree. From the perspective from a child's level of understanding we

would NOT use the terminology " eye-contact. " We used nice looking, thank-you for

looking, I'm so proud you looked at Grammy. Once we got our new consultant

which was 9 months into his program things changed dramatically with his

program.

NET (Natural Environment Teaching) was what we were told to do for now on.

During therapy we had our cheat sheet with 10 boxes. It was up to the therapist

to be creative and find 10 concrete ways to get my son to look at her or him

and in the beginning it could have been a glance or fleeting. We set aside 10

edible reinforcers (10 M & M's or 10 little small spoonfuls of chocolate

frosting and these highly R+ing items were brought out just when we were

actually

taking hard data for this drill. We always let him go play after the 10th 1/2 of

tsp. of frosting. We needed to distract him away from the R+ and the best way

for us was to let him out of the room. As a team we realized how complex and

time consuming it was for all of us teaching that even though this drill is in

my opinion one of the top 3 social skills to have and put into practice we

were going to just follow protocol to a T. Outside of drilling during down time

(well there was never down time in my home, phewwwe I get sleepy just thinking

about it) we would use reinforcement when he did look spontaneously but kept

it to physical R+ment like tickles or pony rides and always instantly when he

looked we would do something differential from the ordinary to highlight in

his mind that he must be doing something right and over time he figured it out

at different levels. Do you really think a child just starting out at say 3

years old that doesn't even know the word ny is his name and what is a name?

Pretty fancy things to learn like eye-contact from my experience doesn't come

with most children until they have been in a program for quite sometime and

have solid attention skills built in and the desire to want to learn and all

behaviors that are maladaptive in nature are eliminated so the child can really

begin to understand.

We did hard data with eye-contact and at times because we made it so aversive

to him in the beginning he would shut down so we would shut down the drill as

well. Incidentally we never stopped praising him and special treats were

given at random.

Expressive Prepositions. We came up with this idea just before we were going

to put it on Maintenance. We would use dolls, action figures objects that had

a face. This was done on the floor. A shoe box was used or even a round

laundry basket. The first figure would be sitting on the box. (BTW_ We made

paper

faces and glued them onto a popsicle stick and cut a hole in the box so the

stick would stand up straight. We allowed my son to draw a face on each popsicle

figure all with big smiles on their faces and paying attention to prompt him in

the eye area to make the eyes a certain color with long eyelashes,.BTW_ This

is a great time to continue to work on manding skills, leave out in front of

you 3 or 4 crayons and he has to ask for the specific color etc..

For this concept the SD was " What or Who is daddy looking at? RE- Daddy is

looking at mommy. Sometimes we would have the figure being looked at turned away

and the response would be RE-Daddy isn't looking at Mommy. Obviously there

are prerequisite programs which need to be taught but this is just one side

drill we created to focus his attention on looking at people. Then we would use

each other and ask the same SD's using the therapists, Mom and dad etc.

Incidentally by now he was able to figure out that looking at a persons face was

important but he still may be at 60%. We then introduced Social Stories and that

people like to see what color your eyes are. That when someone is talking to you

they want you to look at them or they will feel like maybe you don't like

them or you are not listening. We even played Duck Duck Goose for several

objectives and one was eye-contact and social greetings. When the person who

says

duck duck tapped their peer before the child sitting could get up he would have

to maneuver and turn their bodies around and say " Hi, I'm Sue. " Then the chase

would begin. During the chase the duck duck goose child would be prompted to

say " Sue, come get me. " It was very silly and it worked.

Then after social stories and social games we would just give him a friendly

reminder and never punish him for the absence of eye-contact. It got to the

point where I could just talk to him like any other typical child (Although most

children don't even look at age 6 the way we are expecting our Autistic

child.)

I have many other ideas we did for the category Social Skills. Eye-Contact

falls into that category. It's like climbing The State House stairs there is a

beginning and thank God there is an end. If someone needs an idea for a

specific area of eye-contact I will brainstorm with you if you'd like. I am also

available for Parent Mentor consultations.

Keep up the good work everyone. It pays off at every level and my prayer is

that your children master every concept that needs to be known from your ABA/VB

program.

Peacefully,

Shea Cale

Hope4Autism@...

In the beginning our first consultant was interim until Rutgers University

came to my sons number. We did start off with an eye-contact program called

" Look at Me " with the first one. A traditional Lovaas program. This one program

out of all 16 programs we started out with was the most aversive of all to him.

It would cause terrible, violent tantrums and these tantrums lasted as long as

an hour or so. Our consultant told us to put it on hold and we did. I wish I

knew what I know now because I do recall him looking at me and others

incidentally and he would not get specific R+ at that time. We used edibles and

books

(books were highly R+ing) sips of drinks and toys that spin. It was irritating

to say the least. I just didn't have someone at that time to mentor us

besides our consultant and obviously her knowledge was limited in this area.

*Since eye-contact is difficult to teach and difficult to learn it is

imperative to know that there are different levels of retrieving eye-contact.

This

means it is going to take time and for us it took about 4 1/2 yrs. (he would

have been 7 1/2) where it was a natural part of the communication repertoire.

Message: 4

   Date: Wed, 17 Sep 2003 12:17:08 -0700 (PDT)

   From: Schramm <ruggerschr@...>

Subject: Re: Eye Contact

The way that I was recently taught to deal with eye contact is this.

If your child has a strong enough EO (meaning motivation) to get what you are

offering as a reward. they will look at you to get it from you.

In the beginning I wouldn't focus on eye contact because you don't want it to

be a robotic behavior taught the way we learned the states of the U.S.  You

want him to learn eye contact as a functional skill to help him get what he

wants from us.   After all that is what we use it for.

After your child has built up a strong repetoire of skill and only for skills

that he can do fluently (immediately when you ask) you can then choose to

delay the reinforcer by holding it up by your face before you present it (just

slightly at first).  His natural instict will be to look up at you/the

reinforcer.  With consistency and time, this should eventually become a learned

behavior that he is functionally using to get what he needs from the people

around

him.  He in effect learns that if I want something, I have to ask for it and

look at the person giving it in order to get it.  Ultimately, this behavior will

be most likely reinforced in the natural environment as well, so it will be

naturally maintained.

I'd be interested to hear other takes, but this is the one I'm bought into.

Schramm

iluvtwins2000 <grind911@...> wrote:

What are people's opinion on holding out for eye contact?  If you do

hold out, what does it look like?  Do you put their hands to your

face or put the item your working with up to your face or simply sit

quietly until they look?  My son has tons of emerging language - he's

only been verbal since March but communicative intent in regards to

requests is very much there.

I actually don't agree with holding out - especially during this time

of language acquistion because I've watched and held out for eye

contact myself and he's very confused by the delay in receiving his

request and starts running every form of requesting he has - very

unsure what the expectation is - no matter how many times we

say " good looking " . 

ex:

" I want juice " therapist holds cup and waits for eye contact

" Can I have juice please " still holding cup/no eye contact

" Can I have juice please " still waiting

" Can I have juice please, yes " still waiting...

He keeps adding more and more words to the sentence - even when you

bring hands to face.

Any opinions?

-

v

Message: 4

   Date: Wed, 17 Sep 2003 12:17:08 -0700 (PDT)

   From: Schramm <ruggerschr@...>

Subject: Re: Eye Contact

The way that I was recently taught to deal with eye contact is this.

If your child has a strong enough EO (meaning motivation) to get what you are

offering as a reward. they will look at you to get it from you.

In the beginning I wouldn't focus on eye contact because you don't want it to

be a robotic behavior taught the way we learned the states of the U.S.  You

want him to learn eye contact as a functional skill to help him get what he

wants from us.   After all that is what we use it for.

After your child has built up a strong repetoire of skill and only for skills

that he can do fluently (immediately when you ask) you can then choose to

delay the reinforcer by holding it up by your face before you present it (just

slightly at first).  His natural instict will be to look up at you/the

reinforcer.  With consistency and time, this should eventually become a learned

behavior that he is functionally using to get what he needs from the people

around

him.  He in effect learns that if I want something, I have to ask for it and

look at the person giving it in order to get it.  Ultimately, this behavior will

be most likely reinforced in the natural environment as well, so it will be

naturally maintained.

I'd be interested to hear other takes, but this is the one I'm bought into.

Schramm

vv

[Guest guest]

good job

Re: Band-Friendly Chili recipe

>

> thanks

>

> Deborah <WaffleGoddess@...> wrote: Cloudeight

> QuickNotes 81Who doesn't love a nice warm bowl of chili on a cold

> winter night? Below is a chili recipe that my mother used for years. I

> substituted the ground beef for ground turkey and it's quite wonderful.

>

> Debbie

> Poulsbo, WA

> Dr. Montgomery 5/5/05

> 235/168/130

>

>

> Mom's Chili

>

> 1 pound ground turkey

> 1 large sweet onion, chopped

> 2 cloves fresh garlic, minced

> 1/2 teaspoon salt

> Dash pepper

> 1 can condensed tomato soup

> 2 cans kidney beans, undrained

> 1 tablespoon red wine vinegar

> 1/2 cup water

> 2 tablespoons chili powder (I used 1 tablespoon Chipotle chili pepper)

> 1 tablespoon Chipotle Tabasco sauce (or to taste)

> 1 tablespoon olive oil

>

> Brown onion and garlic in olive oil.

>

> Add ground turkey and brown.

>

> Add remaining ingredients. Bring to boil, cover and cook over low heat for

> approximately 30 minutes, stirring occasionally. This freezes well, too!

>

> Per 1/2 cup serving: 225 calories, 6 grams fat, 17 grams protein, 9 grams

> fiber

>

>

>

>

>

[Guest guest]

Hi Rosemary, Thanks so much for the information! jane

for Good - Make a difference this year.