Re: calebs visit to the rheumy

[Guest guest]

,

I know it is hard but bare with this Dr and give him a benefit of a doubt

since he is checking for some other issues. I do not know why. Did he ask

about a whole body MRI to check everything if it is a question of a

maliagmency. You mentioned the labs seem to be good. What is the WBC and the

RBC?

Robbin

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

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

[Guest guest]

- our prayers are with you and your family. I know that it is a

tough time right now for your family. It sounds like the doctors are trying to

be as thorough as possible and you sound like you are Caleb best advocate as

well as a great Mom - with all that Caleb is in good hands. Hope to hear

something positive really soon. Sandi Ken Hunter (9 Systemic)

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

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

[Guest guest]

, I am so so sorry you are going through all of this. But I will say, Dr.

Passo is one of the most thorough docs I have ever met in my life and he will

explore every nook and cranny, so to speak.

He was the one who finally figured out Rob's kidney disease and it was such a

blessing. If it were not for his persistance, Rob's disease would have been

discovered much later after much damage from NSAIDS had been done.

I am a big fan of Dr Passo for that reason. Reading your post, I am even more

convinced of his thoroughness. If he simply said, well I diagnosed systemic so

I'm sticking with it, and ignored his later thoughts to truly and thoroughly

rule out anything else, think of the effect on Caleb if he stuck with his

original dx, and it was wrong. I am so glad that he is so thorough.

I know this is so, so difficult and I feel for you. But I truly do believe you

are in the right place. Dr Passo and Cincy Children's are so highly rated around

the world. My son is living proof.

and Rob 18 JAS

calebs visit to the rheumy

> We are just back from the rheumy appt. They ordered some

> more blood

> work as well as some rare blood work that takes a month to get

> back

> and the results from it come from the research team so that will

> be

> a long wait. Well where to start now we are back to we

> *think* its

> JRA but it may be a maliginacy that we tested to early for

> before.

> As far as the JRA goes he fits all criteria except the arthritis

> and

> his labs are still good but labs really dont factor into the

> diagnosis of JIA but the arthritis does no arthritis no

> formal

> diagnosis. So he also mentioned that they other thing he

> was

> thinking that could be a diagnosis is a maliginacy I was a

> little

> stunned we have already had the test for that the bone marrow

> biopsy. But he explained to us that they might of tested

> for a

> malignancy too soon. He wanted to see what his blood work

> showed

> this time if it is bad then we will repeat and then go on to

> another

> Bone Marrow Biopsy. He said that his main reaoning behind

> the MRI

> yesterday was to see if there was anything in the brain and to

> see

> if this could be something that is a central nervous system

> disorder, this was ok and ruled out( what ever ruled out means

> these

> days seems they rule something out and then retact that as well

> and

> say maybe we tested too soon). Well that is pretty much it

> in a nut

> shell. Pray that his labs give more clues this time so we

> can get a

> better grip on what this is that we are dealing with so we can

> get

> him treated and feeling better as soon as possible!

>

>

>

[Guest guest]

we just got call from fellow wbc are 3 and sed rate is 14 which is higher than

it has ever been the wbc's have been as low as 2.4 in the past. The fellow was

very nice and answered all of my many questions it is possible that this is a

bonus virus but she said to keep in the back of mind that this may be a

malignancy or JIA that since they were abnormal we will repeat them next week if

still abnormal we are going to be on our way back to hemog for another biopsy.a

full body MRi was not ordered he just had a bone scan. the feeling that we got

was that he is thinking blood malignancy again not sure but that was our

impression when he sais malignancy. but he may of meant elsewhere not really

sure when you hear what you associate with cancer you kinda turn the rest of the

conversation off! not sure what rbc's were she did not say but alot of the blood

work was not back yet.

he did again stated that his symptoms are all JIA symptoms minus the arthritis

which i understand can come later with this disease......and he also fits the

malignancy criteria.

Robbin40@... wrote: ,

I know it is hard but bare with this Dr and give him a benefit of a doubt

since he is checking for some other issues. I do not know why. Did he ask

about a whole body MRI to check everything if it is a question of a

maliagmency. You mentioned the labs seem to be good. What is the WBC and the

RBC?

Robbin

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

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

[Guest guest]

its just a very scarry ting when they *rule out* all of the bad cancer things

and now we are revisting them so to speak. lab work a little abnormal per fellow

tonight. we are just stunned since we thought that the possibility of cancer was

behind us but after talking to the fellow i guess it is quite common to be

tested for all of the bad things and come up negative and then a month or so

later they are positive for the bad stuff. so i guess maybe all of this waitng

and changing of minds may be a blessing to us as well if my child has cancer I

dont want him dx with jia. which now makes a lot of since to us but he still

says he is leaning almost completely to the JRA that he said we had before but

wanted to back up to explore this first. if repeat labs still bad this week will

be on his way back to hemog for another bone marrow......

snooksmama@... wrote: , I am so so sorry you are going

through all of this. But I will say, Dr. Passo is one of the most thorough docs

I have ever met in my life and he will explore every nook and cranny, so to

speak.

He was the one who finally figured out Rob's kidney disease and it was such a

blessing. If it were not for his persistance, Rob's disease would have been

discovered much later after much damage from NSAIDS had been done.

I am a big fan of Dr Passo for that reason. Reading your post, I am even more

convinced of his thoroughness. If he simply said, well I diagnosed systemic so

I'm sticking with it, and ignored his later thoughts to truly and thoroughly

rule out anything else, think of the effect on Caleb if he stuck with his

original dx, and it was wrong. I am so glad that he is so thorough.

I know this is so, so difficult and I feel for you. But I truly do believe you

are in the right place. Dr Passo and Cincy Children's are so highly rated around

the world. My son is living proof.

and Rob 18 JAS

calebs visit to the rheumy

> We are just back from the rheumy appt. They ordered some

> more blood

> work as well as some rare blood work that takes a month to get

> back

> and the results from it come from the research team so that will

> be

> a long wait. Well where to start now we are back to we

> *think* its

> JRA but it may be a maliginacy that we tested to early for

> before.

> As far as the JRA goes he fits all criteria except the arthritis

> and

> his labs are still good but labs really dont factor into the

> diagnosis of JIA but the arthritis does no arthritis no

> formal

> diagnosis. So he also mentioned that they other thing he

> was

> thinking that could be a diagnosis is a maliginacy I was a

> little

> stunned we have already had the test for that the bone marrow

> biopsy. But he explained to us that they might of tested

> for a

> malignancy too soon. He wanted to see what his blood work

> showed

> this time if it is bad then we will repeat and then go on to

> another

> Bone Marrow Biopsy. He said that his main reaoning behind

> the MRI

> yesterday was to see if there was anything in the brain and to

> see

> if this could be something that is a central nervous system

> disorder, this was ok and ruled out( what ever ruled out means

> these

> days seems they rule something out and then retact that as well

> and

> say maybe we tested too soon). Well that is pretty much it

> in a nut

> shell. Pray that his labs give more clues this time so we

> can get a

> better grip on what this is that we are dealing with so we can

> get

> him treated and feeling better as soon as possible!

>

>

>

[Guest guest]

Can you tell me why they are thinking about the malignancy? Has arthritis not

shown up?/ We are in the same place in our diagnosis.

thank you

calebs visit to the rheumy

> We are just back from the rheumy appt. They ordered some

> more blood

> work as well as some rare blood work that takes a month to get

> back

> and the results from it come from the research team so that will

> be

> a long wait. Well where to start now we are back to we

> *think* its

> JRA but it may be a maliginacy that we tested to early for

> before.

> As far as the JRA goes he fits all criteria except the arthritis

> and

> his labs are still good but labs really dont factor into the

> diagnosis of JIA but the arthritis does no arthritis no

> formal

> diagnosis. So he also mentioned that they other thing he

> was

> thinking that could be a diagnosis is a maliginacy I was a

> little

> stunned we have already had the test for that the bone marrow

> biopsy. But he explained to us that they might of tested

> for a

> malignancy too soon. He wanted to see what his blood work

> showed

> this time if it is bad then we will repeat and then go on to

> another

> Bone Marrow Biopsy. He said that his main reaoning behind

> the MRI

> yesterday was to see if there was anything in the brain and to

> see

> if this could be something that is a central nervous system

> disorder, this was ok and ruled out( what ever ruled out means

> these

> days seems they rule something out and then retact that as well

> and

> say maybe we tested too soon). Well that is pretty much it

> in a nut

> shell. Pray that his labs give more clues this time so we

> can get a

> better grip on what this is that we are dealing with so we can

> get

> him treated and feeling better as soon as possible!

>

>

>

[Guest guest]

they thought in the very begining that he had leukemia which we did

the bone marrow from. The rheumy said yesterday that there is just

something there that he thinks its worth taking the ? malignancy

approach to things to make sure we are not missing something. He

has fit all leukemia sx to a tee they thought for sure that that was

what he had in the begining but his bone marrow came out ok but from

what i got out of our visit yesteday that you can test too soon for

things of this nature. He did not specifically say leukemia this

time but kept repeating a malignancy. Caleb has lost some motor

functions since he got sick, He can not tie shoes ride a bike and

walks on his toes and that is some of the reasoning per rheumy that

he thinks that this may be a malignancy. I would of thought that

they would of already found it with a bone scan a CT of the belly

and a MRI of the head and a bone marrow biopsy, but i guess that is

why I am not a DR LOL. He had not had what they have termed true

arthritis, they say that he has arthraliga but not a true arthritis

but say that they are sure he will get that next.

, I am so so sorry you are going

through all of this. But I will say, Dr. Passo is one of the most

thorough docs I have ever met in my life and he will explore every

nook and cranny, so to speak.

> He was the one who finally figured out Rob's kidney disease and

it was such a blessing. If it were not for his persistance, Rob's

disease would have been discovered much later after much damage from

NSAIDS had been done.

> I am a big fan of Dr Passo for that reason. Reading your post, I

am even more convinced of his thoroughness. If he simply said, well

I diagnosed systemic so I'm sticking with it, and ignored his later

thoughts to truly and thoroughly rule out anything else, think of

the effect on Caleb if he stuck with his original dx, and it was

wrong. I am so glad that he is so thorough.

> I know this is so, so difficult and I feel for you. But I truly

do believe you are in the right place. Dr Passo and Cincy Children's

are so highly rated around the world. My son is living proof.

> and Rob 18 JAS

>

> calebs visit to the rheumy

>

>

> > We are just back from the rheumy appt. They ordered some

> > more blood

> > work as well as some rare blood work that takes a month to get

> > back

> > and the results from it come from the research team so that

will

> > be

> > a long wait. Well where to start now we are back to we

> > *think* its

> > JRA but it may be a maliginacy that we tested to early for

> > before.

> > As far as the JRA goes he fits all criteria except the

arthritis

> > and

> > his labs are still good but labs really dont factor into the

> > diagnosis of JIA but the arthritis does no arthritis no

> > formal

> > diagnosis. So he also mentioned that they other thing he

> > was

> > thinking that could be a diagnosis is a maliginacy I was a

> > little

> > stunned we have already had the test for that the bone marrow

> > biopsy. But he explained to us that they might of tested

> > for a

> > malignancy too soon. He wanted to see what his blood work

> > showed

> > this time if it is bad then we will repeat and then go on to

> > another

> > Bone Marrow Biopsy. He said that his main reaoning behind

> > the MRI

> > yesterday was to see if there was anything in the brain and to

> > see

> > if this could be something that is a central nervous system

> > disorder, this was ok and ruled out( what ever ruled out means

> > these

> > days seems they rule something out and then retact that as

well

> > and

> > say maybe we tested too soon). Well that is pretty much it

> > in a nut

> > shell. Pray that his labs give more clues this time so we

> > can get a

> > better grip on what this is that we are dealing with so we can

> > get

> > him treated and feeling better as soon as possible!

> >

> >

> >

>

>

[Guest guest]

I am so sorry to hear of what the docs are thinking. I will be praying for you

and family as this uncertainty must be so hard! Thank you for answering my post!

Hugs,

Flower

calebs visit to the rheumy

>

>

> > We are just back from the rheumy appt. They ordered some

> > more blood

> > work as well as some rare blood work that takes a month to get

> > back

> > and the results from it come from the research team so that

will

> > be

> > a long wait. Well where to start now we are back to we

> > *think* its

> > JRA but it may be a maliginacy that we tested to early for

> > before.

> > As far as the JRA goes he fits all criteria except the

arthritis

> > and

> > his labs are still good but labs really dont factor into the

> > diagnosis of JIA but the arthritis does no arthritis no

> > formal

> > diagnosis. So he also mentioned that they other thing he

> > was

> > thinking that could be a diagnosis is a maliginacy I was a

> > little

> > stunned we have already had the test for that the bone marrow

> > biopsy. But he explained to us that they might of tested

> > for a

> > malignancy too soon. He wanted to see what his blood work

> > showed

> > this time if it is bad then we will repeat and then go on to

> > another

> > Bone Marrow Biopsy. He said that his main reaoning behind

> > the MRI

> > yesterday was to see if there was anything in the brain and to

> > see

> > if this could be something that is a central nervous system

> > disorder, this was ok and ruled out( what ever ruled out means

> > these

> > days seems they rule something out and then retact that as

well

> > and

> > say maybe we tested too soon). Well that is pretty much it

> > in a nut

> > shell. Pray that his labs give more clues this time so we

> > can get a

> > better grip on what this is that we are dealing with so we can

> > get

> > him treated and feeling better as soon as possible!

> >

> >

> >

>

>