Sed Rate

[Guest guest]

A high SED rate means an active infection (and this infection was

what likely set you up for an opportunistic chronic infection). Once

your body controlled the active infection, the coagulation was

maintained by the chronic infection...

This is the 'Classic Pattern' for CFIDS onset: another infection

that triggers the CFIDS (by allowing a DIFFERENT opportunistic

chronic infection to get established.

> This may be of interest.

> So at my first sign of sickness, sed rate was 35. ... But since

> then all sed rates have been below 3. I don't know what it means

but it is interesting.

>

> Cindi

[Guest guest]

erythrocyte sedimentation rate (aka SED rate). the test is called by the name.

Good luck.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

[Guest guest]

The normal range for the sed rate is 0 to 13 so that is the goal. 80 is high but there are kids that have sed rates well over 100. My daughter's started out at 53 and is now around 20 and she is doing well. Other things, such as a cold, can cause the sed rate to rise as well so it is a hard to just look at the sed rate but it is used as an indicator.

sed rate

Hi all, I'm reading alot about the sed rate of your little ones. The

last time she had her blood work done Riley's sed rate was 51 down

from 80 something. Is that unbelievably high? Or is that " normal "

for when this disease first shows it's ugly head. I'm sure we'll

know more tomorrow after her 1st rheumy visit, but I figured I have a

wealth of information right at my fingertips thanks to you all.

Thanks for the info.

Eli and Riley 4 poly?

[Guest guest]

Dear Eli, The sed rate should be under 20. Some doctors say that for

children it should be under 10. The c-reactive protein should be under 1.

Good luck. (n, age 13, systemic)

>From: " skyleysmom " <skyley8@...>

>Reply-

>

>Subject: sed rate

>Date: Thu, 16 May 2002 01:35:56 -0000

>

>Hi all, I'm reading alot about the sed rate of your little ones. The

>last time she had her blood work done Riley's sed rate was 51 down

>from 80 something. Is that unbelievably high? Or is that " normal "

>for when this disease first shows it's ugly head. I'm sure we'll

>know more tomorrow after her 1st rheumy visit, but I figured I have a

>wealth of information right at my fingertips thanks to you all.

>Thanks for the info.

>Eli and Riley 4 poly?

>

>

>

>

>

>

[Guest guest]

Hi Eli,

Robbie's sed rate was over 100 at the onset of JRA. (the number 111 comes into

mind - but I know it was over 100 - and now down to 3! Amazing.

Val

Rob's Mom (4,systemic)

In a message dated Wed, 15 May 2002  9:36:49 PM Eastern Daylight Time,

" skyleysmom " <skyley8@...> writes:

>Hi all, I'm reading alot about the sed rate of your little ones. The

>last time she had her blood work done Riley's sed rate was 51 down

>from 80 something.  Is that unbelievably high? Or is that " normal "

>for when this disease first shows it's ugly head.  I'm sure we'll

>know more tomorrow after her 1st rheumy visit, but I figured I have a

>wealth of information right at my fingertips thanks to you all.

>Thanks for the info.

>Eli and Riley 4 poly?

>

>

>

>

>

>

[Guest guest]

We'll keep you all in our prayers Georgina.

Christy

[Guest guest]

HI,

Yeah that is high, was 104 before he seen the rheumy.His usually stays

high 30s-low 40s.He got to 20 once and looked great,but it was comming down

on a steroid taper after a month of flairs that did it,the high doses kicked

Arthurs butt,but one liitle mg drop everything changed.PS)you are a fast

learner,I always ask this group before I call the rheumy. Becki and

3systemic

skyleysmom wrote:

> Hi all, I'm reading alot about the sed rate of your little ones. The

> last time she had her blood work done Riley's sed rate was 51 down

> from 80 something. Is that unbelievably high? Or is that " normal "

> for when this disease first shows it's ugly head. I'm sure we'll

> know more tomorrow after her 1st rheumy visit, but I figured I have a

> wealth of information right at my fingertips thanks to you all.

> Thanks for the info.

> Eli and Riley 4 poly?

>

>

>

>

>

[Guest guest]

Hi,

(Skip down to second paragraph for SED rate stuff) We just got online for a few minutes, as Josh wanted to check out some websites about ... Minnesota. While he was browsing, my mail came in. And this subject caught my eye. (Josh is getting excited about this upcoming AJAO conference and wanted to learn more about the area and local attractions. Camp Snoopy at the Mall of America, for one. He' hoping they'll be able to visit there doing their 'down-time'.) Anyway, we only have a few minutes more before we've got to head to the hospital. He needs to have an echocardiogram done at 1:30. We went back to the doctor again today and when he went over the latest chest xray, compared to the previous one, there's been some changes. Pleural effusions(?). So they're thinking pericarditis again. Possibly. Something is definitely up. Josh has been having a hard time ... even resting, and breathing right. It hasn't been great. I wanted to believe that 5 days on a semi-higher dose of steroids would magically make things alright again ... but it hasn't happened yet. He just had another blood draw, too. Looking to see if there's some bacterial thing. Maybe checking blood gases(?). Poor little guy just had his monthly blood labs done yesterday morning, too.

I had put it off for a week or so, thinking whatever was wrong might look better by now (since so many other things can effect the SED rate value) and we'd still have it done before seeing the rheumatologist. Well ... the pediatrician had yesterday's results and 's sed rate, which was around 37 last time I asked ... was higher still. This time, 87. He used to have it up in the 130's at the highest. Actually got down to the teens a few months ago. When he was feeling really well. So this is worrying me a little. Last night when I took his temp it was 102.2 I thought the fevers were long gone but lately that's been happening again too ... maybe it's just the JRA? Maybe something else going on? Don't quite know for now. Guess it's more of the wait and see ... how it goes, what happens next, that sort of thing.

When I know more, I'll post again.

Aloha Everyone,

Georgina

sed rate

Hi all, I'm reading alot about the sed rate of your little ones. The last time she had her blood work done Riley's sed rate was 51 down from 80 something. Is that unbelievably high? Or is that "normal" for when this disease first shows it's ugly head. I'm sure we'll know more tomorrow after her 1st rheumy visit, but I figured I have a wealth of information right at my fingertips thanks to you all. Thanks for the info.Eli and Riley 4 poly?

[Guest guest]

ELI

when was full blown flaring her sed rate was 3 later it went to 6 and she was doing ok well it went to 9 this time and shes up and down with swelling and pain hoping next week we will get another number on this not only does her rhuemy do the rate but her pediatrician also does it they do a series of labs and i think in my heart that looking at them and watching the numbers are a good sign of finding which is above or below the first one is a tell tell sign i believe anything over 20 is high so s has never been high but that dont mean she isnt having problems the sed rate shows the inflammation in the system i believe and gets really fatigue when she flares the doctor says its her body trying to repair itself

like when your sick and your body is trying to fight it you feel so sleepy and you know you need sleep at this point i do see this in the fatigue is not everyday but every other day her sleep pattern is all messed up to she can sleep 10 to 12 hours at a time then theres day she just cant sleep and when she does sleep its so hard to wake her up i use to get upset with her cause i believe sleep time is night time and day time is awake time lolol forget my thinking now so we bare and go every child is different and well i have gotten use to things out of the ordinary with her and dont let a doctor say a child cant catch something proves them wrong a mom has to go with gut feelings Robbin

[Guest guest]

This is very true, there are so many things that can affect the sed rate that my Rhummy doesn't even do them , He goees on physical exam , which he does very thoroughly each and every month I'm there and on the syptoms that I relay to him for the weeks he didn't see me. Of course I still get blood work about every six weeks but not for the benift of a sed rate. My sed rate in the past has been as high as 143 and for years hovered in the 80's and 90's , I don't know for sure what it is right now but I can tell you this ..It's not below 20 lol :):)Tree:):) Re: sed rate ELI when was full blown flaring her sed rate was 3 later it went to 6 and she was doing ok well it went to 9 this time and shes up and down with swelling and pain hoping next week we will get another number on this not only does her rhuemy do the rate but her pediatrician also does it they do a series of labs and i think in my heart that looking at them and watching the numbers are a good sign of finding which is above or below the first one is a tell tell sign i believe anything over 20 is high so s has never been high but that dont mean she isnt having problems the sed rate shows the inflammation in the system i believe and gets really fatigue when she flares the doctor says its her body trying to repair itself like when your sick and your body is trying to fight it you feel so sleepy and you know you need sleep at this point i do see this in the fatigue is not everyday but every other day her sleep pattern is all messed up to she can sleep 10 to 12 hours at a time then theres day she just cant sleep and when she does sleep its so hard to wake her up i use to get upset with her cause i believe sleep time is night time and day time is awake time lolol forget my thinking now so we bare and go every child is different and well i have gotten use to things out of the ordinary with her and dont let a doctor say a child cant catch something proves them wrong a mom has to go with gut feelings Robbin

[Guest guest]

Georgina-

I'm so sorry to hear Josh is having problems. Are the lung issues related to mtx? He's had them before? I'll pray you'll be able to get this under control quickly.

Diane (, 3, pauci)

[Guest guest]

Hi Tree,

I was wondering when I would hear someone say that their doc didn't do the sed rate. Because nas ped. rhemy has never mentioned it to me but I have read about it along time ago and I have seen a lot of post on here about it lately. And na only has to have blood test I think once a year now and I think that is just to test for certain side effects of the enbrel. My prayers are with you Jona mom of na 2 poly

theresa sappenfield <treesap0@...> wrote:

This is very true, there are so many things that can affect the sed rate that my Rhummy doesn't even do them , He goees on physical exam , which he does very thoroughly each and every month I'm there and on the syptoms that I relay to him for the weeks he didn't see me. Of course I still get blood work about every six weeks but not for the benift of a sed rate. My sed rate in the past has been as high as 143 and for years hovered in the 80's and 90's , I don't know for sure what it is right now but I can tell you this ..It's not below 20 lol :):)Tree:):)

Re: sed rate

ELI when was full blown flaring her sed rate was 3 later it went to 6 and she was doing ok well it went to 9 this time and shes up and down with swelling and pain hoping next week we will get another number on this not only does her rhuemy do the rate but her pediatrician also does it they do a series of labs and i think in my heart that looking at them and watching the numbers are a good sign of finding which is above or below the first one is a tell tell sign i believe anything over 20 is high so s has never been high but that dont mean she isnt having problems the sed rate shows the inflammation in the system i believe and gets really fatigue when she flares the doctor says its her body trying to repair itself like when your sick and your body is trying to fight it you feel so sleepy and you know you need sleep at this point i do see this in the fatigue is not everyday but every other day her sleep pattern is all messed up to she can sleep 10 to 12 hours at a time then theres day she just cant sleep and when she does sleep its so hard to wake her up i use to get upset with her cause i believe sleep time is night time and day time is awake time lolol forget my thinking now so we bare and go every child is different and well i have gotten use to things out of the ordinary with her and dont let a doctor say a child cant catch something proves them wrong a mom has to go with gut feelings Robbin

[Guest guest]

Chin up old man, this old arthritis is a real @@# of #%$@$% but it can't put good man like you down for long. I'm certain you'll bite that bug right in butt!!!

Good thoughts and many Prayers comin your way!

Big warm Hugs!

ye ole michiman.

Rusty Limbs

On Thu, 16 May 2002 13:10:44 -1000 "Georgina" <gmckin@...> writes:

Hi,

(Skip down to second paragraph for SED rate stuff) We just got online for a few minutes, as Josh wanted to check out some websites about ... Minnesota. While he was browsing, my mail came in. And this subject caught my eye. (Josh is getting excited about this upcoming AJAO conference and wanted to learn more about the area and local attractions. Camp Snoopy at the Mall of America, for one. He' hoping they'll be able to visit there doing their 'down-time'.) Anyway, we only have a few minutes more before we've got to head to the hospital. He needs to have an echocardiogram done at 1:30. We went back to the doctor again today and when he went over the latest chest xray, compared to the previous one, there's been some changes. Pleural effusions(?). So they're thinking pericarditis again. Possibly. Something is definitely up. Josh has been having a hard time ... even resting, and breathing right. It hasn't been great. I wanted to believe that 5 days on a semi-higher dose of steroids would magically make things alright again ... but it hasn't happened yet. He just had another blood draw, too. Looking to see if there's some bacterial thing. Maybe checking blood gases(?). Poor little guy just had his monthly blood labs done yesterday morning, too.

I had put it off for a week or so, thinking whatever was wrong might look better by now (since so many other things can effect the SED rate value) and we'd still have it done before seeing the rheumatologist. Well ... the pediatrician had yesterday's results and 's sed rate, which was around 37 last time I asked ... was higher still. This time, 87. He used to have it up in the 130's at the highest. Actually got down to the teens a few months ago. When he was feeling really well. So this is worrying me a little. Last night when I took his temp it was 102.2 I thought the fevers were long gone but lately that's been happening again too ... maybe it's just the JRA? Maybe something else going on? Don't quite know for now. Guess it's more of the wait and see ... how it goes, what happens next, that sort of thing.

When I know more, I'll post again.

Aloha Everyone,

Georgina

sed rate

Hi all, I'm reading alot about the sed rate of your little ones. The last time she had her blood work done Riley's sed rate was 51 down from 80 something. Is that unbelievably high? Or is that "normal" for when this disease first shows it's ugly head. I'm sure we'll know more tomorrow after her 1st rheumy visit, but I figured I have a wealth of information right at my fingertips thanks to you all. Thanks for the info.Eli and Riley 4 poly?

[Guest guest]

Jona

what i look at is the WBC and the RBC CBC and the others when the lab tech starts i ask which tests are they doing on

and when the results will be back i try my best to make sure her RBC is close to the high side and the rest at normal range at least Robbin

[Guest guest]

Good points, Rusty! Plus, think about the diseases these immunizations are for. Most of them can kill people (did you catch ER last night? Immunizations have gotten rid of smallpox, for example). I am glad I had my three children immunized and don't regret it. I did read the literature before immunizing them and did it anyway.is the only one with these problems. My son has an immune system that is out of whack. His allergies, asthma and now arthritis are all signs of that. He could have developed this no matter what. Or perhaps because I didn't breast feed him, or maybe something in the air, or ...... Don't mean to offend anyone - just happen to agree with Rusty (who said it better than I) - it is not an exact science, drs don't know all. Unfortunately, things happen no matter what you do. I don't think we as parents should feel guilty if we believe we have done the best for our kids. Michele

-----Original Message-----From: A Morse [mailto:dam755@...] Sent: Friday, May 17, 2002 10:42 AM Subject: Sed rate

Jona, mom of na (2poly)

Thank you for the kind word, yes unfortunately there is some bad doctors out there, but for every one of those bad doctors, there are 1000 good Honest doctors who really do care.

Ones whom actually went into the field of medicine to help people, not to fatting their wallets! But alas, for that one bad apple, does the whole barrel be judged!

The greatest problem with medicine is that it is not an exact science, so many variables.

And of course each individual reacts differently to the same medications.

I used to wonder if it was because I didn't get, all of my immunizations as a child, that I developed jra?!

I didn't get them all because I was terrified of needles, and they couldn't hold me down. 3 nurses and my mother!

Still got that bullheaded spirit today!

The best anyone can do is ask lots of questions and don't except some, hem haw type of a response!

Of course as many of the others have said, also keep a daily journal of your childs' medical, and your own as well.

The thing I truly believe is, don't let the doctor intimidate you, they my have the medical degree, butt it's your child, your with them daily.

So you have to be a P A for the doctor.

Rusty Limbs (34 yrs. poly-A.S.)

[Guest guest]

Thank you Michele, Out of 9 children I am the only one to have full blown childhood onset jra!

The thing about it was as I've wrote in other posts is, that from the age of 3yrs. to 13yrs. I didn't have even a cold, much less all of the other childhood deceases. No I believe I got them all prior to 3yrs of age.

Even still today, I can be around people with this flu and colds and not get them myself. Of course I attribute that to my attentiveness to hand washing and not fingering my face when around people with these viruses.

And as for my siblings, well as I started I have a younger sister who has adult on set and also a niece as well, a couple brothers with carpel tunnel and of course a couple other sisters with some osteo arthritis. And they all had all there vaccinations. So go figure!!

Yes I did see ER last night, between my soft hearted tears as I watched.

Rusty (just an ole softy) Limbs

On Fri, 17 May 2002 11:27:06 -0500 "Tepper, Michele" <Micheletepper@...> writes:

Good points, Rusty! Plus, think about the diseases these immunizations are for. Most of them can kill people (did you catch ER last night? Immunizations have gotten rid of smallpox, for example). I am glad I had my three children immunized and don't regret it. I did read the literature before immunizing them and did it anyway.is the only one with these problems. My son has an immune system that is out of whack. His allergies, asthma and now arthritis are all signs of that. He could have developed this no matter what. Or perhaps because I didn't breast feed him, or maybe something in the air, or ...... Don't mean to offend anyone - just happen to agree with Rusty (who said it better than I) - it is not an exact science, drs don't know all. Unfortunately, things happen no matter what you do. I don't think we as parents should feel guilty if we believe we have done the best for our kids. Michele

-----Original Message-----From: A Morse [mailto:dam755@...] Sent: Friday, May 17, 2002 10:42 AM Subject: Sed rate

Jona, mom of na (2poly)

Thank you for the kind word, yes unfortunately there is some bad doctors out there, but for every one of those bad doctors, there are 1000 good Honest doctors who really do care.

Ones whom actually went into the field of medicine to help people, not to fatting their wallets! But alas, for that one bad apple, does the whole barrel be judged!

The greatest problem with medicine is that it is not an exact science, so many variables.

And of course each individual reacts differently to the same medications.

I used to wonder if it was because I didn't get, all of my immunizations as a child, that I developed jra?!

I didn't get them all because I was terrified of needles, and they couldn't hold me down. 3 nurses and my mother!

Still got that bullheaded spirit today!

The best anyone can do is ask lots of questions and don't except some, hem haw type of a response!

Of course as many of the others have said, also keep a daily journal of your childs' medical, and your own as well.

The thing I truly believe is, don't let the doctor intimidate you, they my have the medical degree, butt it's your child, your with them daily.

So you have to be a P A for the doctor.

Rusty Limbs (34 yrs. poly-A.S.)

[Guest guest]

Good thing you listened to your mom and remember to wash your hands!! It is amazing that you don't get that sick. Of my three, has always been the most sick. Its funny though, he is not "sickly". When you look at all 6 feet of him (and growing!) he looks perfectly fine. And now that his limp is all but gone you can't tell that he has any problems. But without the meds who knows where he would be? I feel bad when people get down on themselves or think what if? I know when was diagnosed my mother felt so guilty because she has osteo arthritis and she thought she gave his arthritis. It wasn't until we talked and I explained to her how different they are, did she finally stop blaming herself. I understand there are risks in all we do; we need to realize that we are doing the best for our children. We are here even to learn as much as we can and to help each other. Thinking about your family, of all my nieces and nephews (there are 9 in my immediate family) is the only one with any chronic illness. The others are all ok. And they have all been immunized (or are still getting their shots). So I guess it really can be a random thing, where certain factors come together and trigger this. Just my thoughts, Michele

-----Original Message-----From: A Morse [mailto:dam755@...] Sent: Friday, May 17, 2002 11:58 AM Subject: Re: Sed rate

Thank you Michele, Out of 9 children I am the only one to have full blown childhood onset jra!

The thing about it was as I've wrote in other posts is, that from the age of 3yrs. to 13yrs. I didn't have even a cold, much less all of the other childhood deceases. No I believe I got them all prior to 3yrs of age.

Even still today, I can be around people with this flu and colds and not get them myself. Of course I attribute that to my attentiveness to hand washing and not fingering my face when around people with these viruses.

And as for my siblings, well as I started I have a younger sister who has adult on set and also a niece as well, a couple brothers with carpel tunnel and of course a couple other sisters with some osteo arthritis. And they all had all there vaccinations. So go figure!!

Yes I did see ER last night, between my soft hearted tears as I watched.

Rusty (just an ole softy) Limbs

On Fri, 17 May 2002 11:27:06 -0500 "Tepper, Michele" <Micheletepper@...> writes:

Good points, Rusty! Plus, think about the diseases these immunizations are for. Most of them can kill people (did you catch ER last night? Immunizations have gotten rid of smallpox, for example). I am glad I had my three children immunized and don't regret it. I did read the literature before immunizing them and did it anyway.is the only one with these problems. My son has an immune system that is out of whack. His allergies, asthma and now arthritis are all signs of that. He could have developed this no matter what. Or perhaps because I didn't breast feed him, or maybe something in the air, or ...... Don't mean to offend anyone - just happen to agree with Rusty (who said it better than I) - it is not an exact science, drs don't know all. Unfortunately, things happen no matter what you do. I don't think we as parents should feel guilty if we believe we have done the best for our kids. Michele

-----Original Message-----From: A Morse [mailto:dam755@...] Sent: Friday, May 17, 2002 10:42 AM Subject: Sed rate

Jona, mom of na (2poly)

Thank you for the kind word, yes unfortunately there is some bad doctors out there, but for every one of those bad doctors, there are 1000 good Honest doctors who really do care.

Ones whom actually went into the field of medicine to help people, not to fatting their wallets! But alas, for that one bad apple, does the whole barrel be judged!

The greatest problem with medicine is that it is not an exact science, so many variables.

And of course each individual reacts differently to the same medications.

I used to wonder if it was because I didn't get, all of my immunizations as a child, that I developed jra?!

I didn't get them all because I was terrified of needles, and they couldn't hold me down. 3 nurses and my mother!

Still got that bullheaded spirit today!

The best anyone can do is ask lots of questions and don't except some, hem haw type of a response!

Of course as many of the others have said, also keep a daily journal of your childs' medical, and your own as well.

The thing I truly believe is, don't let the doctor intimidate you, they my have the medical degree, butt it's your child, your with them daily.

So you have to be a P A for the doctor.

Rusty Limbs (34 yrs. poly-A.S.)

[Guest guest]

6'FOOT! GO Chris! should we ever meet I'll need a step ladder to look him in the eye, or end up staring into his belly button**

Rusty (on the short side) Limbs

[Guest guest]

That's about where I am myself (at only 5'4" he 's way over me!). Looks Dad in the eye, which Dad finds a little disconcerting, I tell you. Yes, he has really hit a growth spurt. Since Oct he has grown over 3 inches. It doesn't seem like he'll ever stop! Hope this damp weather hasn't been too rough on you. It is cold and damp here in Chicago and Chris' back has been a bit sore. Michele

-----Original Message-----From: A Morse [mailto:dam755@...] Sent: Friday, May 17, 2002 12:48 PM Subject: Re: Sed rate

6'FOOT! GO Chris! should we ever meet I'll need a step ladder to look him in the eye, or end up staring into his belly button**

Rusty (on the short side) Limbs

[Guest guest]

Not too bad, thae day after my Mtx dose, I was a bit fatigued, but only lasted a day! Mostly my neck is bothered by the dampness. I used to messure 4"5' or is that 5'4"? now around 5'?"!

haven't measured lately,

Rusty

On Fri, 17 May 2002 12:59:04 -0500 "Tepper, Michele" <Micheletepper@...> writes:

That's about where I am myself (at only 5'4" he 's way over me!). Looks Dad in the eye, which Dad finds a little disconcerting, I tell you. Yes, he has really hit a growth spurt. Since Oct he has grown over 3 inches. It doesn't seem like he'll ever stop! Hope this damp weather hasn't been too rough on you. It is cold and damp here in Chicago and Chris' back has been a bit sore. Michele

-----Original Message-----From: A Morse [mailto:dam755@...] Sent: Friday, May 17, 2002 12:48 PM Subject: Re: Sed rate

6'FOOT! GO Chris! should we ever meet I'll need a step ladder to look him in the eye, or end up staring into his belly button**

Rusty (on the short side) Limbs

[Guest guest]

Hi Eli,

Hearing of a sed rate that high is very scary. You

have this little person with labs so off, it's hard to

believe at first. 's first sed rate at two

years old was 116, with everything else out of whack

too. She's down to 32 now with very little (if any)

symptoms. Hang in there Eli, things will get better.

Kim and (3, poly)

--- skyleysmom <skyley8@...> wrote:

> Hi all, I'm reading alot about the sed rate of your

> little ones. The

> last time she had her blood work done Riley's sed

> rate was 51 down

> from 80 something. Is that unbelievably high? Or is

> that " normal "

> for when this disease first shows it's ugly head.

> I'm sure we'll

> know more tomorrow after her 1st rheumy visit, but I

> figured I have a

> wealth of information right at my fingertips thanks

> to you all.

> Thanks for the info.

> Eli and Riley 4 poly?

>

>

__________________________________________________

[Guest guest]

Robbin,

I dont know if its a systemic thing or that has not been able

to get under control with the meds yet but the only things normal about

his blood is-SGOT,SGPT,RBC,HEMOGLOBIN,HEMATOCRIT,MEAN PLATELET VOLUME,MONO%,EOS%,AND

BASO%.everything else is messed up,some barely off others way off.s

sister had to have an automated CBC 2 weeks ago because she had a painful

pea size knot behind her ear,her labs where perfect,at least one of my

kids has normal blood,it seemed so strange looking at her labs compaired

to s.

Becki and 3systemic

Robbin40@... wrote:

Jona

what i look at is the WBC

and the RBC CBC and the others

when the lab tech starts

i ask which tests are they doing on

and when the results will

be back

i try my best to make sure

her RBC is close to the high side

and the rest at normal range

at least

Robbin

[Guest guest]

Thanks Rusty your very nice and supportive. Jona mom of na 2 poly

A Morse <dam755@...> wrote:

Jona, mom of na (2poly)

Thank you for the kind word, yes unfortunately there is some bad doctors out there, but for every one of those bad doctors, there are 1000 good Honest doctors who really do care.

Ones whom actually went into the field of medicine to help people, not to fatting their wallets! But alas, for that one bad apple, does the whole barrel be judged!

The greatest problem with medicine is that it is not an exact science, so many variables.

And of course each individual reacts differently to the same medications.

I used to wonder if it was because I didn't get, all of my immunizations as a child, that I developed jra?!

I didn't get them all because I was terrified of needles, and they couldn't hold me down. 3 nurses and my mother!

Still got that bullheaded spirit today!

The best anyone can do is ask lots of questions and don't except some, hem haw type of a response!

Of course as many of the others have said, also keep a daily journal of your childs' medical, and your own as well.

The thing I truly believe is, don't let the doctor intimidate you, they my have the medical degree, butt it's your child, your with them daily.

So you have to be a P A for the doctor.

Rusty Limbs (34 yrs. poly-A.S.)

[Guest guest]

Well put all. To spend our lives looking back instead of forward doesn't accomplish anything. But I do think that it is a part of the initial grieving process that we all have gone through, or for the families with a new diagnosis, are still going through. And unfortunately, we all will go through days, when we grieve all over again. Just know that life goes on, and goes on well, even for the really seriously ill children. As parents we can help our child laugh about the downs. In our family, we all know that Abbie has a poltergeist in her knee. Looking at it that way helps Abbie to feel more like her friends. Most of them know there is something wrong, but she doesn't talk about it to many of them. Her biggest problem is in keeping up in the hallways. So to be able to laugh when her knee gives out makes it easier. It will be a long road if there is no laughter.

Christy (Abbie 12, systemic)

[Guest guest]

Okay, I have to put in my 2 cents in about the immunization thing. I grew up watching the devastating effects of polio on my mother and sister. I will remember forever the day our entire town lined up in the school cafeteria to receive our sugar cube vaccine. My mothers tears reinforced even at the tender age of 4 or 5(?) that this was a life altering experience. So did I hesitate to immunize any of my children? No way; even though I watched on tv news the story of a man who contracted polio by changing his recently immunized childs diaper when he had an open wound on his hand. Was I more careful? You bet! I am glad I don't have to make the decision again, but my gut feeling is that the benefits far outweigh the risks that may be incurred. All we hear is the bad. . .not about the millions of children immunized with no repercussions.

Christy (Abbie, 12 systemic)