Help needed

May 4, 2005

I have to agree with when she says " WOW " . I am sitting here reading

this before i take the kids to school. crying.. You hit the nail right on

the head. Very nicely said...

hugs,

Emilie

help needed

>>

>> Ok guys I need some help...I have finally talked local news media

> into

>> doing

>> a segment on JRA!!!! And just as one would expect the anchor who

> will be

>> doing

>> this was dumbfounded to hear KIDS GET ARTHRITIS TOO. I have

> provided

>> some

>> stats and basic info but she has asked " FOR IMFORMATION ABOUT THE

> WORST

>> EFFECTS

>> OF J.A. - COULD YOU FORWARD ME SOME INFO OR GIVE ME GOOD SITE ON

> THE

>> WEB FOR

>> THAT " . I have sent this link Juvenile Arthritis: Arthritis Is A

>> Children's

>> Disease Too but I need something with major impact. I want to hit

> the

>> television hard. If some of you could answer the question about the

>> worst effects or

>> send a link I will be so grateful!

>> Thanks to everyone and together we WILL make a difference!

>> Hugs and smiles!

>> Donna

>>

February 5, 2006

Donna,

First and foremost do not give up!

Find the mommy lion within yourself and keep seeking answers.It's out there

somewhere,you just have to find the right specialist.

Take the same advise we give here.Get copies of all labs,tests,ets and keep a

journal of all symptoms.At some point all the pieces of the puzzle just might

fit.

I pray you get the answer soon,there is nothing worse then having a sick

child or a child in pain and you don't know what to do to help.

Hang tough and stay strong!

Love and hugs

Becki and 7 systemic

PS)Hope to see you next Sunday

February 6, 2006

Hi Donna.

if this is still bothering you have to keep pursuing until

you get to the bottom of it. its what us moms do....he should not

have to feel this way.

I know its tough sometimes but you have to put s well being

ahead of what the doctors might think or say. They are not gods and

dont always have the answers. We know our kids best and we know when

something is not as it should be.

You are an awesome mom, never doubt that, we are behind you 100%.

let us now how it goes tomorrow.

hugs Helen and (8,systemic)

-- In , ajaoky@... wrote:

>

> Well as many of you know I have been having problems getting a dx

for my son

> . His original complaints were chest pain and we went

through several

> possibilities from his asthma, to GERD, to costochondritis. We

have been

> through many tests and the DX is still inconclusive. For the past

3 days he has

> been complaining of his left hip hurting, to the point that when

he was

> sitting on the floor when he got up he almost fell. I am clueless

what to do and

> feel like I am being one of those Moms....anyway I am calling his

pediatrician

> back tomorrow and starting all over I guess. My question is how

do I approach

> these doctors without feeling this way???

> Thanks gang!

> Donna

>

February 6, 2006

We have been through so many tests, labs, etc and everything is either

negative or inconclusive. I will get the results and post them soon. Has anyone

been through the tests indicating nothing but your child still having JRA??? You

would think with my 36 yrs of JRA experience I wouldn't have to ask these

questions but its different when its your child.....thanks to everyone who has

responded!

hugs and smiles!

Donna

February 6, 2006

I don't feel you are one of THOSE moms. I think your doctor just isn't

listening to you. You know you child better then anyone and if you feel there's

something there then you need to find another PED. Good luck to you with this

and prayers for your relief.

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

-------------- Original message --------------

From: ajaoky@...

Well as many of you know I have been having problems getting a dx for my son

. His original complaints were chest pain and we went through several

possibilities from his asthma, to GERD, to costochondritis. We have been

through many tests and the DX is still inconclusive. For the past 3 days he has

been complaining of his left hip hurting, to the point that when he was

sitting on the floor when he got up he almost fell. I am clueless what to do

and

feel like I am being one of those Moms....anyway I am calling his pediatrician

back tomorrow and starting all over I guess. My question is how do I approach

these doctors without feeling this way???

Thanks gang!

Donna

February 6, 2006

Oh Helen! I am digging away and growling the whole time. We have switched

peds and this will be our 2nd visit today. Will keep yall posted.Tthanks my

best internet buds! Luv and hugs to all!

Donna

February 6, 2006

-Donna,

You hang in there girl, we are all behind you 110%...perhaps a new

ped will be the answers. A fresh pair of eyes, so to speak.

As to your question, there were times after the inital onset that

Nicks had normal labs, normal joints and for all that was said and

done should have been feeling " normal " put he was in a lot of pain

and very stiff in the mornings. Nicks labs have not often matched up

with howhe was feeling at any given time. Theres also times that his

labs have been off and hes beeen feeling better than he has in

awhile.

Not that this helps much, but if is not feeling " right " then

somehting s going on, you keep digging.

hugs Helen and (8,systemic)

-- In , ajaoky@... wrote:

>

> We have been through so many tests, labs, etc and everything is

either

> negative or inconclusive. I will get the results and post them

soon. Has anyone

> been through the tests indicating nothing but your child still

having JRA??? You

> would think with my 36 yrs of JRA experience I wouldn't have to

ask these

> questions but its different when its your child.....thanks to

everyone who has

> responded!

> hugs and smiles!

> Donna

>

February 7, 2006

Donna,

Chase's bloodwork never showed anything as far as the JRA. He was tested for

Lyme disease, catscratch fever, Kawasaki disease, etc. His alt level was never

high. It still isn't. I hope this helps you.

Deadra

ajaoky@... wrote:

We have been through so many tests, labs, etc and everything is either

negative or inconclusive. I will get the results and post them soon. Has anyone

been through the tests indicating nothing but your child still having JRA??? You

would think with my 36 yrs of JRA experience I wouldn't have to ask these

questions but its different when its your child.....thanks to everyone who has

responded!

hugs and smiles!

Donna

September 1, 2006

What exactly are you asking here?

help needed

I have the state forensic labs email skipper or my clark please email him ill sent the files from here but i dont think its gonna cut it..www.wagnermsafety (DOT) statenh.us please educate this man..

October 24, 2006

DEAR ALL

pl go to fallowing link.

IF ONE PRACTICES PRANAYAMA PROPERLY ALL DISEASES CAN BE CURED INCLUING

CANCER.

YOU MUST DO IT WITH 100% FAITH.

http://www.focalpointyoga.com/pranayam.htm

Vasant T. Poojari</html>

>From: " SHANMUGAN .P " <shan_civilengg@...>

>Reply-

>

>Subject: help needed

>Date: Mon, 23 Oct 2006 10:07:22 +0100 (BST)

>

>can you give me details about pranayama please

>

> What is Pranayama?

> How does Pranayama help in Positive Thinking?

> What is the role of Pranayama in Meditation?

>

> & #2986;. & #2999; & #2979; & #3021; & #2990; & #3009; & #2965; & #2985; & #3021;

>

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

> Find out what India is talking about on - Answers India

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>Get it NOW

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October 25, 2006

As all of you are witnessing ,Ram Dev ji is using 'Pranayama' in a very big way to transdorm lives.It has now been established that enormous health benefits can be achieved by regular practice of 'Pranayama'.According to Maharishi Patanjali,there are eight limbs of Yoga:

1.Yama

2.Niyama

3.Asana

4.Pranayama

5.Pratyahara

6.Dharna

7.Dhyana and

8.Samadhi

Obviously,Pranayama is the 4th limb of Yoga.All these eight limbs of Yoga are interconnected.As all the important organs of our body are interconnected,so are all these eight limbs of Yoga are also interconnected.

Infact, if you go into the details further,'Yama' & 'Niyama' are very close to the term "Positive Thinking'.And 7th limb of Yoga i.e.'Dhyana' stands for 'Meditation'.

If you practice 'Pranayama' regularly,your thoughts also start getting refined ,you start developing a positive personality and you are better able to concentrate.Obviously,right after Pranayama,if you sit for Meditation.you are most successful.

According to YOG DARSHAN of Maharishi Patanjali,Pranayama is defined as below:

"TASMIN SATI SHWASPRASHWASYORGATI VICHHEDAH PRANAYAMA." {YOG DARSHAN--2/49}

which means that the specialised twchniques other than normal breathing in which the brething patterns are radically changed so that PRANA is considerabely expanded.

This expansion(AYAMA) of PRANA is responsible for the betterment of Physical,Mental,Intellectual and Spiritual Health of human beings.

LOGIC:According to Tetteriya Upanishad,we are made up of Five Sheaths(PANCHKOSHAs) .These Koshas or Sheaths are:

1)ANNAMAYA KOSHA or our BODY which is strengthened by eating food.

2)PRANAMAYA KOSHA or our AURA which is strengthened by PRANAYAMA.

3)MANOMAYA KOSHA or our MIND which is strengthened by Positive Thoughts.

4)VIGYANMAYA KOSHA or our INTELLECT which is strengthened by gaining knowledge.

5)ANANDMAYA KOSHA or our SOUL which is strengthened by uniting with GOD in the state of Meditation.

So,stengthening one kind of 'kosha' also positively affects other koshas or sheaths.

Mukul Chaudhrihttp://www.mukulchaudhri.blogspot.com

help needed

can you give me details about pranayama please

What is Pranayama?

How does Pranayama help in Positive Thinking?

What is the role of Pranayama in Meditation? ப. ஷண்முகன்

Find out what India is talking about on - Answers India Send FREE SMS to your friend's mobile from Messenger Version 8. Get it NOW

October 25, 2006

Good interpretation Mukul; I have some information on Pranayam which I shall like to share with the group, though I am not sure, When?

With Greetings and Best wishes for the Festive Season.

Sincerely,

Ravi Bhargava

On Wed, 25 Oct 2006 mukul chaudhri wrote :

>As all of you are witnessing ,Ram Dev ji is using 'Pranayama' in a very big way to transdorm lives.It has now been established that enormous health benefits can be achieved by regular practice of 'Pranayama'.According to Maharishi Patanjali,there are eight limbs of Yoga:

>1.Yama

>2.Niyama

>3.Asana

>4.Pranayama

>5.Pratyahara

>6.Dharna

>7.Dhyana and

>8.Samadhi

>

>Obviously,Pranayama is the 4th limb of Yoga.All these eight limbs of Yoga are interconnected.As all the important organs of our body are interconnected,so are all these eight limbs of Yoga are also interconnected.

>

>Infact, if you go into the details further,'Yama' & 'Niyama' are very close to the term " Positive Thinking'.And 7th limb of Yoga i.e.'Dhyana' stands for 'Meditation'.

>If you practice 'Pranayama' regularly,your thoughts also start getting refined ,you start developing a positive personality and you are better able to concentrate.Obviously,right after Pranayama,if you sit for Meditation.you are most successful.

>

>According to YOG DARSHAN of Maharishi Patanjali,Pranayama is defined as below:

>

> " TASMIN SATI SHWASPRASHWASYORGATI VICHHEDAH PRANAYAMA. " {YOG DARSHAN--2/49}

>

>which means that the specialised twchniques other than normal breathing in which the brething patterns are radically changed so that PRANA is considerabely expanded.

>

>This expansion(AYAMA) of PRANA is responsible for the betterment of Physical,Mental,Intellectual and Spiritual Health of human beings.

>

>LOGIC:According to Tetteriya Upanishad,we are made up of Five Sheaths(PANCHKOSHAs) .These Koshas or Sheaths are:

>

>1)ANNAMAYA KOSHA or our BODY which is strengthened by eating food.

>

>2)PRANAMAYA KOSHA or our AURA which is strengthened by PRANAYAMA.

>

>3)MANOMAYA KOSHA or our MIND which is strengthened by Positive Thoughts.

>

>4)VIGYANMAYA KOSHA or our INTELLECT which is strengthened by gaining knowledge.

>

>5)ANANDMAYA KOSHA or our SOUL which is strengthened by uniting with GOD in the state of Meditation.

>

>So,stengthening one kind of 'kosha' also positively affects other koshas or sheaths.

>

>Mukul Chaudhri

>http://www.mukulchaudhri.blogspot.com

>

> help needed

>

> can you give me details about pranayama please

>

> What is Pranayama?

> How does Pranayama help in Positive Thinking?

> What is the role of Pranayama in Meditation?

>

> ?. ????????

>

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

> Find out what India is talking about on - Answers India

> Send FREE SMS to your friend's mobile from Messenger Version 8. Get it NOW

>

August 2, 2007

My solution is to keep it out of the house and drink lots of water when you

feel hungry. I use a lot of sugar free water flavorings and eat sugar free

popsicles to avoid sweet cravings. Good luck.

Penni Ferry, Dr. Simpson, Phoenix, AZ

Highest - 1/1/06 - 333

Banded - 2/5/07 - 275.5

Now - 230.5

Goal - 150

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August 5, 2007

The emotional eating is the hardest part of banding, and the band does

nothing at all to help with that. There are many eating and food-

related issues we all need to work on, and working with a good

therapist is ideal. We are NOT " crazy " " sick " or " mental cases " - but

we DO have food issues, or we would not have become so heavy. In

addition to a wonderful therapist, I also found a lot of help in using

Guided Imagery. It is a scientifically-proven way to change behaviors,

especially those needed with weight loss and other medical issues.

There is information about the Bandster Success Guided Imagery CD's in

the files that you might be interested in. They were designed

especially for Bandsters, and address Bandster issues - head hunger,

emotional eating, motivation, improving self-image so we don't WANT to

hurt ourselves with extra calories, good sleep, and much more.

But we have to be practical too - don't even have that stuff around!

Allow regular small treats, but go out to get them. Mine was ice

cream - I had a small dish every week, but had to go out to get it. If

I had had a whole 1/2 gallon here, it would have been gone within a

couple days. HAVE a small bag of Cheetos, if you want, occasionally -

but go out to buy the 99 cent bag, not the Family Size!

Ice cream, cake, and candy will always go down easily, so they have

nothing to do with needing more fill. Test your fill with a good band

meal - that's thebonly thing that will tell. Have 2-4 oz of moist

chicken, steak, or other SOFT, MOIST , HIGH-quality food, adn maybe

1/2 - 1/2 cup of veggies. If you cannot eat that, you are already too

tigth. and may need some OUT.

Most of us are way too quick, imo, to run for more fill - that's why

there are so many band troubles and the stats about slips and erosions

are increasing badly. We alwsys want as LITTLE fill as possible, never

as much as we can possibly get away with. Please only go for more fill

if you really need it.

It's often other things that need " adjusting " . :-)

Sandy r

>

> I'VE been band for 16 month and i'm down 110 lbs still have 90 to

go.

> Above a two month ago i started eating like there is no tomorrow.

Ice

> cream, cake, lemon head candy(little yellow balls of lemon) and

chips.

> I start off good in the morning but by lunch i want candy or sweets.

> Well i have not losting any more wieght but i gain and lose the same

1-

> 2 lbs. I'm going in for a fill in sept. but i need help to get back

on

> track. Any advise is needed. thanks

>

January 19, 2008

Dear ,

I wish I could be of service or optimistic in what you've described. I can

only assume a miscommunication between you and your surgeon has occurred.

Resuming 'normal activities' should not have included competitive dancing in my

opinion and I wonder if the surgeon remembered her normalacy in that

context. I know teens heal faster than adults but after my surgery last year I

had

to practice 6 months of BLT...no bending, leaning, or twisting. (and no

driving) I was told that it would take 6 months just to see if some fusion was

starting in xrays and from 1 to 2 years before full fusion would have been

achieved. I can't see that process could possibly could have been achieved in

8

weeks even by a teen. My first surgery as a teen I was placed in a plaster

body cast for 4 months preventing any kind of body movement although that was

in the dark ages of the 60's.

I think you need an assessment by your surgeon or another scoliosis

specialist to what your opinion are now and her dancing should be stopped

immediately. Sorry to be so brutal, but she's at risk for future damage that

would

affect her entire life in my opinion.

Jolene

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

January 20, 2008

Hi,

I too had my surgery at the age of 15 and was given a clear to do

whatever I wanted, as long as it didn't bother me. I couldn't do

hands on sports for a year but after that year I could play tackle

football if I so choosed as long as I was comfortable with it. I

haven't had any big problems or pains since the surgery and that was

12 years ago December 26.

I do think that now a days people can resume their normal activities

as long as it doesn't bother them. I recently had some shoulder pain

so I went to a NON surgical back doctor at the same university as my

surgeon. I would check out that option before you start burning

nerve endings just to see if their is anything else they can do.

With my shoulder pain that started the Dr figured out what was

causing it and gave me a few options, surgery being the last option

if it doesn't go away.

Good Luck to both you and your daughter. Just tell her to be strong

and this will pass too.

Lara

>

> Hello,

> My 15 year old daughter had her spinal fusion in July of last year.

She is a

> competetive dancer. 8 weeks after surgery we thought we were home

free. My

> daughter was doing great and was told by s Hopkins she could

resume her

> normal activity. She did great for about 1 month. In November the

pain came. By

> December we started to go to a spine pain management office. They

injected

> her with steroids and anesthetic. It helped for 2 weeks. She has

had several

> more injections but cannot get anymore. Each one lasted maybe 2

weeks. We don't

> know if it is muscle or nerve. We have to wait forever before our

> appointment at Hopkins. I email the surgeon often and although he

has performed over

> 2500, he told me no one has ever had this problem. I am beyond

freaked out. She

> is suffering and has had to drop half her dance classes. Now they

are

> talking about burning nerve endings and she is scared. Has anyone

had this issue?

> Has anyones screws caused issues the first year with muscle or

nerve? Any

> advice is appreciated.

>

> in MD

>

> **************Start the year off right. Easy ways to stay in

shape.

> http://body.aol.com/fitness/winter-exercise?

NCID=aolcmp00300000002489

>

January 21, 2008

I have had tests to determine if pain is coming from a

muscle or a nerve. So there are procedures she can

have to see which the pain is coming from before they

burn any nerve endings. ~Moonbeam

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

January 22, 2008

could be eczema

--- April Hornung <ape0522@...> wrote:

> My girls have red dry skin behind their knees. Does

> this mean anything? I am new to all this.

>

> Sam is taking peptizide, no fenol and zymeprime,

> biotin, threelac, lysine. Her stools are still in

> ball shapes. I have seen no signs of yeast die-off.

> I was giving them epsom salt baths for a week but

> she started drinking the water so I stopped.

>

> has the same dry red skin behind her

> knees. She is not on enzymes yet. I am waiting for

> the chewables to come in the mail. I had made

> chocolate wafers with the chewable samples I had. I

> know she will eat the chewables and not touch the

> chocolate. Her stools are not really formed but

> diaharea either. She is taking biotin, GFE and

> lysine.

>

> April

>

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

> Never miss a thing. Make your homepage.

>

> [Non-text portions of this message have been

> removed]

>

________________________________________________________________________________\

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January 22, 2008

>

> My girls have red dry skin behind their knees. Does this mean

anything? I am new to all this.

I have read a few parents indicating that meant food intolerance for

their kids.

Dana

August 25, 2008

Sorry your daughter is having these reactions. While I do not have any

experience with this, I did want to mention there is a drug called

Orencia ( (Rob) takes it). I think there is also someone here on

the list whose child is on it as well. Sometimes a dr may need to go

back and try an older drug rather than use the newer biologics.

Sometimes the older DMARD's can help. I know that is not a popular way

to go, but if she is having these reactions it is something to try

perhaps.

Is it possible she is reacting to some sort of medium in the drugs

themselves? Something that would be common to all the injectibles? Just

a thought.

I hope you find some answers soon, Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of J. Cassady

Sent: Monday, August 25, 2008 11:36 AM

Subject: help needed

Hello everyone,

I don't really post too much on here, but I do enjoy reading all of

your posts. I have learned so much from all of you so I thought I

would see if anyone has every experienced anything like this before.

My daughter, aged 14, was diagnosed with Poly JRA in March of

2006. At the time she was put on naproxen as many children are when

first diagnosed. Well that alone did not work so the ped. rheumy addd

methotrexate injections. Of course those two didn't work either so we

stopped the naproxen, continued the methotrexate and added Remicade.

She took that for about 6 months until her body built up antibodies

to it so it stopped working. She was switched to Humira which she

took for about a month an a half until we realized it was the cause

of her hives. She was allergic to it. She was started on weekly

Enbrel, but we think she is allergic to that as well. She is having

the injection site reactions, but they are real bad and last until

her next shot if not longer. Everywhere I've read it says it could

last 2 to 5 days, but hers is lasting 7 to 10 days and she is getting

hives again. They ped. rheumy says it would be highly unlikely she

would be allergic to both, but this is the same as she was with the

Humira, but her site reaction is way worse. I have put a call in to

the allergist so we will see what he says.

My main concern is that the Remicade no longer works on her and if

she is allergic to both Humira and Enbrel, what is our next step.

Aren't those the only three TNF blockers available? Has anyone else

had this happen to them? What did the doctor do? I am so worried

right now and don't know where to turn.

I know this was a long post. I just wanted to thank you all for

letting me go on and on. =]

Hugs and Kisses,

mom to , 14 (Poly JRA, severe IBS, chronic urticaria,

and back problems)

August 26, 2008

Hello, My daughter has been on several of the meds you mentioned and is

currently on Enbrel 2 times per week with only moderate success. I know our

rhuematologist is waiting for a new med that has been successful in australia

and I think Japan for quite a while. I will probably not even be close in the

spelling or pronunciation; toximilabulab?? it is an IL 6 inhibitor that is

received by IV infusion every two weeks. it might be something for your

daughter too. good luck, and Jana 4 yo, systemic JRA since 8 months of

age.

From: J. Cassady <j_cassady25@...>

Subject: help needed

Date: Monday, August 25, 2008, 12:35 PM