More Questions

[Guest guest]

Hi Kristee,

I've talked to many people with depressed appetites yet they have a hyper stomach/digesstive system - me included. Just one of the weird quirks of Graves disease.

I'm sorry I don't know about the mag in apples for breakfast I'm just a fruit/toast person - I'm more of a grazer. You should check te ithyroid website for more foods. I have found oriental foods to be bad for hypers - way too much sodium.

Have you had any eye problems such as dryness or sensitivity to light or vision changes? If so, go to an Opthalmologist and get REFRESH TEARS! MONA

more questions

I'm still waiting for the wonderful book to come my way along with a firm diagnosis.

A few questions--what foods have a higher magnesium content other than broccoli? I want to be able to counterbalance the milk I've been drinking and the occasional Tums. (I don't want to supplement. Oddly, I found that taking Mg in the past makes me feel 'down.' Odd finding.)

I thought that apples are high in magnesium then I read somewhere that an apple can give one just as much if not more energy than a cup of coffee in the morning. (I already am hyperenergized and trying to find that happy medium.) I ate an apple the night before and 'whew' what a horrible day yesterday. Curious if anyone else experienced that or if there was another trigger.

Those are my thoughts for now. Thanks for being patient with me. As mentioned, all of this is new to me. I don't have a definitive dx but feel the drs. are missing the boat because I am on beta blockers and my symptoms match hyperthyroid exactly.

Also, curious if anyone has a hyperactive gut yet a poor appetite? That's the only 'odd' part.

I can't wait to return to some state of 'normalcy' and reading the posts from you gives me 'hope.'

Thanks again!

Kristee

[Guest guest]

-

Sounds like the first doctor I took to. I'd purposefully asked him questions I knew the answer to just to see what he'd say. I didn't feel like he was being straight with me, or that he was as up as he should be on jra. I went elsewhere. In Arizona, where we live, there are NO pediatric rheumatologists. There are plenty of adult rheumatologists who also treat children. The one we see has a very large pediatric practice and is very active with kids issues (e.g. research, camps, seminars on jra) and I couldn't be happier with him ('s in her 2d remission) So, if you're not comfortable, do some research around the community. I made tons of phone calls (to pediatricians, pediatric physical therapists, the Children's Hospital, the local chapter of the Arthritis Foundation, and other jra moms) and they all pointed me in the direction of the doctor we use. Another option is to travel. The closest pediatric rheumatologist for us is probably at UCLA, and I'd go that route if I didn't feel comfortable with the treatment was receiving. You could even see someone locally and consult on a less frequent basis with someone out-of-state. Just some options. I think it's so important to be comfortable with your child's doctor, to know you can trust him, believe he knows all he should know, AND is willing to talk to you and remain open to questions or suggestions about treatment.

Diane (, 4, pauci)

[Guest guest]

I would definitely get another pedi rheumi I mean you can grow out it.. but you need a doctor to act agressively and assume every case wont get better so he gives the best treatment to make the kid better..

(poly JRA and Spondy, 19)

[Guest guest]

Hi ,

Your ped rheumy sounds a bit strange to me.JRA is a chronic illness it is genetic but something has to trigger it like a virus or bacterial infection.Alot of children do just outgrow it but many go on into adulthood.

Your very lucky to have a ped rheumy in your city but many travel very long distances to get the proper care.

If you go to the JRA list main paige and click on links you will find one that takes you to The American College of Rheumatoligy,I think thats it and you can find every board certified ped rheumy in your state or surrounding states.

We are lucky that we only have to drive an hour to Vanderbilt but every few months we make the 6 hour journey to Cincinnati.We turn it into a mini vacation and look forward to these trips.

Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 2/20/04 12:18:35 PM Eastern Standard Time,

bonnielu729@... writes:

<< t genetic.maybe i should try looking for

another dr. the onlly problem is he is the ONLY pedi. rheumy in the

city. what do i do????? YVONNE(Eileen 12 pauci)

>>

Hi :

Where I am (VA) the closest pediatric rheumy was in DC Children's Hospital,

but they have since closed that office. Then there is a pedi rheumy in

town that sees patients one half day a week, extremely hard to see him.

Then

there is one at Hopkins, again extremely busy and an hour and a half away.

There is a pedi one in Richmond that a couple of parents take their child

too which is two hours away. The problem is that during Caitlin's illness our

engine seized on our 'dependable' vehicle so I couldn't get there if I wanted

to. However, we have found an absoulutely wonderful, caring, compassionate,

gentle, concerned and aggressive in his treatment in a rheumy who sees both

adults and children. He trained under the doctor/professor at town. This

has, so far, worked out wonderfully for him. I think he really enjoys working

with children. He certainly seems so with Katibug anyway and she thinks he's

great.

Good luck with finding a new rheumy. I hope you find someone you and your

children like and trust.

Take care.

Patty

[Guest guest]

jra IS a chronic ilness, am i right or wrong? the pedi

> rheumy says it's not. he says that eileen will " grow " out of it.

Hi ,

it is true that some jra kids do grow out of it, but the risk of

developing arthritis later in life remains greater than to someone

without jra. Anyway, jra IS most definitely a chronic disease for

most patients.

About jra being genetic. Since the mechanism that causes this disease

is unknown, it's impossible to prove scientifically that it's genetic

or that it's not. To my knowledge, the idea is today that there's a

genetic component involved. So it's not like some diseases which are

sure to come up with certain genetical defects.

You should definitely have another doc if you feel you can't trust

him. But jra is a very complicated disease, so who's to say if he's

right or wrong?

My boss, our hospitals chief ped. rheumy alway says that there are

only two " minor details " about jra we don't know about: first, we

don't know what causes it. And secondly, we don't know how to cure it.

Hope you can find a good doc for your child.

Soili

[Guest guest]

. Our rhuemmy told us that with the pauci jra Caroline has a

50% chance of growing out of it.

Alia and Caroline, age 2, pauci and uveitis

> hi all! thanks for the response on the siblings w/jra i have

another

> question. jra IS a chronic ilness, am i right or wrong? the pedi

> rheumy says it's not. he says that eileen will " grow " out of it.i'm

> begining to hink that maybe i should look for another pedi rheumy

for

> my kids.every question i have asked him so far has been the total

> opposite of what i have either researched or what i have been told

by

> you. he also said it is not genetic.maybe i should try looking for

> another dr. the onlly problem is he is the ONLY pedi. rheumy in the

> city. what do i do????? YVONNE(Eileen 12 pauci)

[Guest guest]

well said, !

Val

Rob's Mom (6,systemic)

In a message dated 2/20/2004 2:20:17 PM Eastern Standard Time, bncknwurnumber

writes:

> I would definitely get another pedi rheumi I mean you can grow out it.. but

you need a doctor to act agressively and assume every case wont get better so he

gives the best treatment to make the kid better..

>

> (poly JRA and Spondy, 19)

>

>

>

>

[Guest guest]

Wow Becki! I didn't realize how far you have to drive. I am floored

and amazed. I admire you tons! It makes me appreciate being in a big

city where I only have to go 15 minutes to my rhummey. I feel bad

complaing about driving 30 mintues to go see the opthamologist!

Alia and Caroline, age 2, pauci and uveitis

> Hi ,

> Your ped rheumy sounds a bit strange to me.JRA is a chronic illness

it is

> genetic but something has to trigger it like a virus or bacterial

infection.Alot

> of children do just outgrow it but many go on into adulthood.

> Your very lucky to have a ped rheumy in your city but many travel

very long

> distances to get the proper care.

> If you go to the JRA list main paige and click on links you will

find one

> that takes you to The American College of Rheumatoligy,I think

thats it and you

> can find every board certified ped rheumy in your state or

surrounding states.

> We are lucky that we only have to drive an hour to Vanderbilt but

every few

> months we make the 6 hour journey to Cincinnati.We turn it into a

mini vacation

> and look forward to these trips.

> Hugs

> Becki and 5 systemic

[Guest guest]

Hi Alia,

We make the drive because s rheumies realy wanted to put him on Enbrel.Unfortunately at the time you had to be put on a waiting list through the drug manufacturer.Unbeknowing to all of us the month s aplication was sent in was the last month they let new patiants have it.After 9 months on the waiting list we found about a drug study in Cincinnati.We immediately jumped at the oppurtunity.The first year we had to go every 3 months,now just every six and our last trip will be Oct 05.

Hugs

Becki and 5 systemic

[Guest guest]

Becki.

is lucky to have you. You are an awesome mom! Wow!

Alia and Caroline, age 2, pauci and uveitis

> Hi Alia,

> We make the drive because s rheumies realy wanted to put him

on

> Enbrel.Unfortunately at the time you had to be put on a waiting

list through the drug

> manufacturer.Unbeknowing to all of us the month s aplication

was sent in

> was the last month they let new patiants have it.After 9 months on

the waiting

> list we found about a drug study in Cincinnati.We immediately

jumped at the

> oppurtunity.The first year we had to go every 3 months,now just

every six and

> our last trip will be Oct 05.

> Hugs

> Becki and 5 systemic

[Guest guest]

I feel for your frustration, in the beginning when my son was symptomatic it

was very difficult to pinpoint a diagnosis. At the time, I didn't have this

groups wisdom, so you are already are a step ahead. Taking a picture was

very smart and pro active which I am afraid you must always be. My son was

finally diagnosised after we went to a larger teaching hospital, we live in

Fl, I finally took him to Miami Children's Hospital and there they didn't

hesitate to give us a diagnosis. FYI, all of my sons blood work is

normal.....

Good Luck,

V

(Mom to Adam 10 JAS)

More Questions

> Thanks to everyone who responded to my post from a few days ago. My

> 2 year old daughter has not yet been diagnosed and I feel like I am

> really kind of getting a run around from her doctors. Her last

> appointment I actually got more results because I took pictures of

> her swelling and rashes. They finally said that their is definately

> a problem. They have not done any x-rays or mri's. So far they have

> just checked her blood. They did a CBC and a sed rate all of which

> were normal. So they tell me it can't be jra. Although from what I

> read very small children often have normal sed rates. Could anyone

> please tell me of any specific tests that have been done and do you

> think I should insist on xrays or a mri? Most of Hannah's problems

> seem to be in her wrists but she does complain of hip pain. There

> are times that she cries just touching any part of her body. At this

> point I am very frustrated and feel like I should be doing more. I

> am just not sure what the more is. I understand that it is a process

> of elimination but its seems like they have not been doing much

> eliminating. She has had high spiking fevers 105-106 degrees for

> over a year now and the joint involvement began in September 2003.

> So almost her entire life has been pain and sickness. Unfortunately

> the doctors seem to think that since whatever she has isn't fatal I

> shouldn't be as concerned (that was actually said to me) Her

> peditrician said she is just zigging when she should be zagging. I

> appreciate any information any one can give me.

>

> Carey mom to Hannah Rose 2 years

> ville, TN

>

>

>

>

>

[Guest guest]

Carey,,,

Your daughter is not getting the care she needs and deserves. I think her doctors are selling her and you short... I think its time to find a good Ped Rhuemy and a new Ped.

No child should have to live in pain like that....

Good luck... you are doing the right things in documeting. You just need to find a caring doctor who takes your concerns seriously enough and doesnt brush you off with flip answers.. The" shes zipping when she should be zagging" comment made my blood boil....

Hugs to you and your daugther..

Helen and (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: app_37190@... >Reply- > >Subject: More Questions >Date: Wed, 03 Mar 2004 02:42:34 -0000 > >Thanks to everyone who responded to my post from a few days ago. My >2 year old daughter has not yet been diagnosed and I feel like I am >really kind of getting a run around from her doctors. Her last >appointment I actually got more results because I took pictures of >her swelling and rashes. They finally said that their is definately >a problem. They have not done any x-rays or mri's. So far they have >just checked her blood. They did a CBC and a sed rate all of which >were normal. So they tell me it can't be jra. Although from what I >read very small children often have normal sed rates. Could anyone >please tell me of any specific tests that have been done and do you >think I should insist on xrays or a mri? Most of Hannah's problems >seem to be in her wrists but she does complain of hip pain. There >are times that she cries just touching any part of her body. At this >point I am very frustrated and feel like I should be doing more. I >am just not sure what the more is. I understand that it is a process >of elimination but its seems like they have not been doing much >eliminating. She has had high spiking fevers 105-106 degrees for >over a year now and the joint involvement began in September 2003. >So almost her entire life has been pain and sickness. Unfortunately >the doctors seem to think that since whatever she has isn't fatal I >shouldn't be as concerned (that was actually said to me) Her >peditrician said she is just zigging when she should be zagging. I >appreciate any information any one can give me. > >Carey mom to Hannah Rose 2 years >ville, TN > Get business advice and resources to improve your work life, from bCentral.

[Guest guest]

In a message dated 3/3/04 12:13:56 PM Eastern Standard Time,

MTepper@... writes:

<< . He is ANA pos, but many people are

and don't have JRA or RA. He is even HLAB 27 negative (most with

spondylitis are positive) and the spondy diagnosis still stuck, based on

his symptoms. I agree with Helen, I would recommend a new dr. Could you

get to a teaching hospital, or one a >>

Hi Michele:

Do you remember when they tested for the HLA-B27? I have learned that

this is an indicator for reactive arthritis. I have looked through Caitlin's

labs and haven't spotted it. I am still hoping and praying for RA and have

learned it can take 3-12 months to go away. So I am wondering to myself 'why

didn't they do this test'? Her next labs aren't for another 6 weeks or so, but

I want this test done NOW. If she is positive, then perhaps it is one more

link to a RA dx.

Take care.

Patty

[Guest guest]

In a message dated 3/3/04 12:53:38 PM Eastern Standard Time,

idmommy97@... writes:

<< systemic JRA, the internal organs can become inflamed,

with my son both his heart and his left lung became inflamed, and we

wouldn't have known if it weren't for chest xrays, which showed that his

heart was enlarged as >>

Is this something that the particular person may get more so than others with

SoJRA. Can you have organ inflammation at any time or do you find that some

people are more susceptible to organ involvement during flares, etc? Does

this even make sense?

[Guest guest]

Hi,

I also have to agree with everyone else.My son was so classic that he got diagnosed 21 days after the first symptom.

My name is Becki and I live about an hour away in Murfreesboro.You never answered if Hannah was going to Vanderbilt and seeing Dr.Lawton or Dr.Hummell.If not thats where you need to be.If so and they are the ones treating you this way, then I would recommend going to Cincinnati Childrens Hospital.We go there also and that place is wonderful.

Hugs

Becki and 5 systemic

[Guest guest]

Hi, Carey. My son was diagnosed based on his symptoms. The ped rheumy

came in and asked lots of questions and did a thorough physical exam and

said she believed had JRA. Spondy was added a few months

later,again based on his symptoms. His blood work has always been

normal, his SED rate never elavated. He is ANA pos, but many people are

and don't have JRA or RA. He is even HLAB 27 negative (most with

spondylitis are positive) and the spondy diagnosis still stuck, based on

his symptoms. I agree with Helen, I would recommend a new dr. Could you

get to a teaching hospital, or one attached to a university? They seem

to be the most current on things. Remember there is no blood test to

determine JRA. Unfortunately. Diagnosis is made based on symptoms. The

blood work can only help confirm diagnosis and, once meds are started,

making sure they are not affecting other organs. Please see if you can

find a ped rheumy. If not, educate yourself as much as possible. My

son's rheumy, when he was first diagnosed, told me the goal is for kids

to be pain free. Also, about it not being life threatening. In most

cases it might not be. But it is life altering and that alone is reason

to try to make her pain free. Also, when kids with jra, particularly

systemic, (which with the fevers Hannah sounds like), organ invovlement

not treated properly, could lead to life threatening situations. It is

important that these drs listen to you. Find all the info you can, print

out what pertains to your situation and take it to these drs.Georgina

posts lots of medical info, studies from universities, etc. Sorry to

rant, but I hate when drs do not take parents seriously. It is not fair

to the kids! Michele (16,pauci & spondy)

More Questions

Thanks to everyone who responded to my post from a few days ago. My

2 year old daughter has not yet been diagnosed and I feel like I am

really kind of getting a run around from her doctors. Her last

appointment I actually got more results because I took pictures of

her swelling and rashes. They finally said that their is definately

a problem. They have not done any x-rays or mri's. So far they have

just checked her blood. They did a CBC and a sed rate all of which

were normal. So they tell me it can't be jra. Although from what I

read very small children often have normal sed rates. Could anyone

please tell me of any specific tests that have been done and do you

think I should insist on xrays or a mri? Most of Hannah's problems

seem to be in her wrists but she does complain of hip pain. There

are times that she cries just touching any part of her body. At this

point I am very frustrated and feel like I should be doing more. I

am just not sure what the more is. I understand that it is a process

of elimination but its seems like they have not been doing much

eliminating. She has had high spiking fevers 105-106 degrees for

over a year now and the joint involvement began in September 2003.

So almost her entire life has been pain and sickness. Unfortunately

the doctors seem to think that since whatever she has isn't fatal I

shouldn't be as concerned (that was actually said to me) Her

peditrician said she is just zigging when she should be zagging. I

appreciate any information any one can give me.

Carey mom to Hannah Rose 2 years

ville, TN

[Guest guest]

I agree with everyone else, find a doctor who will listen to you and take

your daughter's symptoms serious, poor little thing.With my son, it was a

pretty clear diagnosis, the doctors were actually " excited " to see such a

clean case of systemic JRA. I would also suggest to you, like what was

mentioned, if it is systemic JRA, the internal organs can become inflamed,

with my son both his heart and his left lung became inflamed, and we

wouldn't have known if it weren't for chest xrays, which showed that his

heart was enlarged as well as the inflamed lung. Be aggressive and seek out

a doctor who will treat your daughter aggressively. Good luck, and I hope

she feels better soon.

Jodi

>From: " Helen Burger " <hburger64@...>

>Reply-

>

>Subject: RE: More Questions

>Date: Wed, 03 Mar 2004 06:35:41 -0600

>

_________________________________________________________________

Get a FREE online computer virus scan from McAfee when you click here.

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Carey,,,

Your daughter is not getting the care she needs and deserves. I think her doctors are selling her and you short... I think its time to find a good Ped Rhuemy and a new Ped.

No child should have to live in pain like that....

Good luck... you are doing the right things in documeting. You just need to find a caring doctor who takes your concerns seriously enough and doesnt brush you off with flip answers.. The" shes zipping when she should be zagging" comment made my blood boil....

Hugs to you and your daugther..

Helen and (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: app_37190@... >Reply- > >Subject: More Questions >Date: Wed, 03 Mar 2004 02:42:34 -0000 > >Thanks to everyone who responded to my post from a few days ago. My >2 year old daughter has not yet been diagnosed and I feel like I am >really kind of getting a run around from her doctors. Her last >appointment I actually got more results because I took pictures of >her swelling and rashes. They finally said that their is definately >a problem. They have not done any x-rays or mri's. So far they have >just checked her blood. They did a CBC and a sed rate all of which >were normal. So they tell me it can't be jra. Although from what I >read very small children often have normal sed rates. Could anyone >please tell me of any specific tests that have been done and do you >think I should insist on xrays or a mri? Most of Hannah's problems >seem to be in her wrists but she does complain of hip pain. There >are times that she cries just touching any part of her body. At this >point I am very frustrated and feel like I should be doing more. I >am just not sure what the more is. I understand that it is a process >of elimination but its seems like they have not been doing much >eliminating. She has had high spiking fevers 105-106 degrees for >over a year now and the joint involvement began in September 2003. >So almost her entire life has been pain and sickness. Unfortunately >the doctors seem to think that since whatever she has isn't fatal I >shouldn't be as concerned (that was actually said to me) Her >peditrician said she is just zigging when she should be zagging. I >appreciate any information any one can give me. > >Carey mom to Hannah Rose 2 years >ville, TN > Get business advice and resources to improve your work life, from bCentral.

[Guest guest]

I am definitely going to add it to next labs. I wish I had thought of it

sooner with one of her past labs, then I'd know already. I don't want to make

them stick her for that only though. She's had enough of them already. Her

older sister, Alyssa, had labs drawn today (seeing her endo next Wednesday for

her Hashimoto Disease) and she is such a pro, just sits there, puts her arm out

and two minutes later, done. It's great when they aren't anxious about the

whole thing. had her labs done on Monday and she was anxious, but

didn't cry or move her arm YEAH!

Take care.

Patty

[Guest guest]

With n we kept getting the run around from her pediatricians. They kept saying it was just a virus. So we brought her to the ER early one morning, and they said it was just the flu and sent her home. That evening she was deathly sick again and I had my husband bring her back to the ER and told him not to leave until we had a diagnosis. This time they took us more seriously and admitted her. I did have to lie though, we told them we wanted her tested for Lyme's disease. They kept saying that we didn't have it here in Oregon, so we told them she had been camping with a hunting dog back east. We had a diagnosis and a ped rheumy by the next morning. Keep fighting. It is exhausting, but if she has jra she should be getting diagnosed pretty soon. (n, 15,systemic

RE: More Questions>Date: Wed, 03 Mar 2004 06:35:41 -0600>_________________________________________________________________Get a FREE online computer virus scan from McAfee when you click here. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

About 6 months after his first diagnosis, started baseball season.

He was a catcher and began to have pain in his hips, as he said. When we

went to the dr, she actually found the inflammation was in his pelvic

rim. Also found some in his achilles tendon, which led her to diagnose

spondy. So the blood work that month included a test for HLAB 27. Just

to see if it was pos or neg. Luckily it was negative. In people with

spondylitis who are pos. they have more complications from the disease.

If they are doing the blood work anyway, one more test on the blood

can't hurt. Perhaps you could ask for that to be added. Michele

Re: More Questions

In a message dated 3/3/04 12:13:56 PM Eastern Standard Time,

MTepper@... writes:

<< . He is ANA pos, but many people are

and don't have JRA or RA. He is even HLAB 27 negative (most with

spondylitis are positive) and the spondy diagnosis still stuck, based on

his symptoms. I agree with Helen, I would recommend a new dr. Could you

get to a teaching hospital, or one a >> Hi Michele:

Do you remember when they tested for the HLA-B27? I have learned

that

this is an indicator for reactive arthritis. I have looked through

Caitlin's

labs and haven't spotted it. I am still hoping and praying for RA and

have

learned it can take 3-12 months to go away. So I am wondering to myself

'why

didn't they do this test'? Her next labs aren't for another 6 weeks or

so, but

I want this test done NOW. If she is positive, then perhaps it is one

more

link to a RA dx.

Take care.

Patty

[Guest guest]

I am not quite sure what your question is exactly regarding organ

involvement, but what I know is with systemic JRA, most likely the organs

become inflamed, I think the likelyhood of it happening is how long the

inflammation lasts before treatment is started to bring down the

inflammation, with my son, he had been so sick for weeks without being able

to get him under control, that his organs got involved. Does that make

sense?

Jodi , Bronson,8, systemic (he'll be 9 tomorrow!)

>From: Emeraldsx3@...

>Reply-

>

>Subject: Re: More Questions

>Date: Wed, 3 Mar 2004 13:39:43 EST

>

>In a message dated 3/3/04 12:53:38 PM Eastern Standard Time,

>idmommy97@... writes:

>

><< systemic JRA, the internal organs can become inflamed,

> with my son both his heart and his left lung became inflamed, and we

> wouldn't have known if it weren't for chest xrays, which showed that his

> heart was enlarged as >>

>

>Is this something that the particular person may get more so than others

>with

>SoJRA. Can you have organ inflammation at any time or do you find that

>some

>people are more susceptible to organ involvement during flares, etc? Does

>this even make sense?

>

>

>

>

>

[Guest guest]

Hello Again,

Hannah is actually seeing a ped. rheumatologist at a University

hospital but I really don't think they listen and they are the ones

that said since it is nothing fatal. The only way I got them to

listen is by showing them the pictures of her swelling and rashes.

Her swelling comes and goes and often times we will go to the doctor

and they won't see it and if they don't see it they don't believe

it. I am looking for another rheum. in my area. I know they have a

lot of experience and more education on it but I live with her 24/7 I

know the pain she experiences and a lot of days it is significant.

Thanks to everyone offering suggestions. I have to admit I am really

frustrated and on an emotional roller coaster so I appreciate all the

responses.

Carey mom to Hannah 2 years old

ville, Tn

> Hi, Carey. My son was diagnosed based on his symptoms. The ped

rheumy

> came in and asked lots of questions and did a thorough physical

exam and

> said she believed had JRA. Spondy was added a few months

> later,again based on his symptoms. His blood work has always been

> normal, his SED rate never elavated. He is ANA pos, but many people

are

> and don't have JRA or RA. He is even HLAB 27 negative (most with

> spondylitis are positive) and the spondy diagnosis still stuck,

based on

> his symptoms. I agree with Helen, I would recommend a new dr. Could

you

> get to a teaching hospital, or one attached to a university? They

seem

> to be the most current on things. Remember there is no blood test to

> determine JRA. Unfortunately. Diagnosis is made based on symptoms.

The

> blood work can only help confirm diagnosis and, once meds are

started,

> making sure they are not affecting other organs. Please see if you

can

> find a ped rheumy. If not, educate yourself as much as possible. My

> son's rheumy, when he was first diagnosed, told me the goal is for

kids

> to be pain free. Also, about it not being life threatening. In most

> cases it might not be. But it is life altering and that alone is

reason

> to try to make her pain free. Also, when kids with jra, particularly

> systemic, (which with the fevers Hannah sounds like), organ

invovlement

> not treated properly, could lead to life threatening situations. It

is

> important that these drs listen to you. Find all the info you can,

print

> out what pertains to your situation and take it to these

drs.Georgina

> posts lots of medical info, studies from universities, etc. Sorry

to

> rant, but I hate when drs do not take parents seriously. It is not

fair

> to the kids! Michele (16,pauci & spondy)

>

>

> More Questions

>

>

> Thanks to everyone who responded to my post from a few days ago.

My

> 2 year old daughter has not yet been diagnosed and I feel like I am

> really kind of getting a run around from her doctors. Her last

> appointment I actually got more results because I took pictures of

> her swelling and rashes. They finally said that their is

definately

> a problem. They have not done any x-rays or mri's. So far they

have

> just checked her blood. They did a CBC and a sed rate all of which

> were normal. So they tell me it can't be jra. Although from what I

> read very small children often have normal sed rates. Could anyone

> please tell me of any specific tests that have been done and do you

> think I should insist on xrays or a mri? Most of Hannah's problems

> seem to be in her wrists but she does complain of hip pain. There

> are times that she cries just touching any part of her body. At

this

> point I am very frustrated and feel like I should be doing more. I

> am just not sure what the more is. I understand that it is a

process

> of elimination but its seems like they have not been doing much

> eliminating. She has had high spiking fevers 105-106 degrees for

> over a year now and the joint involvement began in September 2003.

> So almost her entire life has been pain and sickness.

Unfortunately

> the doctors seem to think that since whatever she has isn't fatal I

> shouldn't be as concerned (that was actually said to me) Her

> peditrician said she is just zigging when she should be zagging. I

> appreciate any information any one can give me.

>

> Carey mom to Hannah Rose 2 years

> ville, TN

>

>

>

>

>

[Guest guest]

Hello,

to put it bluntly: it is impossible for simple mortals to understand exactly

what is going on.

Sure, it is frequency dependant. But it is not determind which ones.

The high frequencies react to the body, but also the low frequencies.

Especially the low frequent modulations added to the high frquencies for

mobile phone.

The go like 17.3 Hz, 100 Hz and 217 Hz, even 15000 Hz with UMTS.

Do not fortget, that we speak about normal transversal waves AND

longitudinal or Tesla waves.

The latter we cannot measure directly, so we cannot discuss them according

theory.

A simple cordless home telephone according the DECT/GAP principle is killing

you!

Not directly, but in a few months. Its pulsed signals are emitted 14 hours a

day.

A simple cordless home telephone according an analogue principle is not

pulsed, and radiates only when you phone.

Greetings,

Claessens

member Verband Baubiologie

http://members.rott.chello.nl/cclaessens/

http://www.hese-project.org

checked by Norton Antivirus

More Questions

>

>

> > Conventional aerials used to receive EM radiation are optimised based on

> > geometry.... As far as I understand, a general rule for conventional

> aerials

> > is that their length should be at least one quarter of the wavelength of

> the

> > radiation they are trying to receive. Based on this assumption, the

> average

> > human body would act as an aerial for radiation with a wavelength of

four

> times

> > the size of the body. Assuming that the average human body was 1.8

metres

> > high, the largest wavelength that could be significantly received by the

> body

> > would theoretically be 7.2metres (41.67MHz), though this is dependant on

> the

> > orientation of the body with respect to the direction of polarisation of

> the

> > radiation. I have heard this value quoted by others as the wavelength

> with

> > which the entire body will resonate. Could someone please correct me if

> I'm

> > wrong on any of this as I am very keen to gain a correct understanding

of

> all

> > this and hope to use this understanding productively. The conclusion I

> drew

> > from all this was that radiation above 41.67MHz has the potential to

> induce

> > resonance in certain body parts, depending on their size and orientation

> to the

> > direction of polarisation of the radiation. I would be interested to

know

> if

> > anyone has ever calculated what frequency of radiation would best be

> received

> > by particularly susceptible body parts, such as the pineal gland.

> >

> > This discussion also deliberately brings me to another recent topic of

> > conversation on the list, namely the bioprotect card and other such

> devices.

> > Could Dietrich, or someone else please clarify the mechanism by

> which

> > they operate? Do these devices 'attract' a certain frequency of

> radiation,

> > based on their geometry, so that the device resonates rather than any

part

> of

> > the human anatomy? Furthermore, would this mean that the effectiveness

of

> such

> > devices is frequency dependant and could this therefore explain why they

> don't

> > work for different people experiencing health problems due to different

> > frequencies of radiation? I hope someone can help me out with these

> questions.

> > Thanks

> > Lachlan

> >

> >

> >

> >

> >

> >

[Guest guest]

> Your question about frequency is related to a very complicated issue of

> what really causes adverse reactions to EMF... Up to now, one thing

> is for sure - there is still no simple answer (if any)...

I don't think any of us here can state with any certainty that there is

no simple explanation for EMF sensitivity. All we can really state is

that *we* have not figured it out. Someone may very well have the answer

right now. But either we don't know know about it... or we don't believe

it... :-)

> I, for example, keep using my simple cordless home telephone that

> operates exactly at the frequency you pointed out as potentially

> resonant to the body, and although I am highly sensitive, it gives

> me less unpleasant feeling than a regular table telephone (not to

> mention the cellular).

Certainly frequency is a factor -- for example, I have a different

reaction to my computer monitor running at 800x600 resolution than 1024x

768 resolution. The only change there is the frequency...

Marc