Re: Rob's biopsy results/AMY

[Guest guest]

Amy:

I did get an email from the nephrologist (he is awesome!) and here it is:

" The results are VERY preliminary, does not look like IgA nephropathy at

this time, too early to say what else it might be, still waiting on some

special tests, should have results by end of next week. We will discuss

all possibilities regarding diagnosis and treatment on the 28th (sorry

to keep you waiting!). If I hear anything conclusive before that, you

will be the next to know. "

Thanks for your email, Amy. I can't believe that they took 6 samples from

you! They took 2 from Rob. His biopsy was last Friday 8/6. The

nephrologist came in on his day off to meet with us to discuss the

biopsy, and the day of the biopsy, he was not on rotation to do it but

met us there and introduced us to the doctor who did. I can't say enough

about how kind this guy is. I can email him with questions at any time.

He is the director of the nephrology department at Cincinnati Children's

Hospital. We feel very blessed that Rob is in his care.

Rob has juvenile ankylosing spondylitis. It has affected his knees, hips

and spine. He couldn't walk for about 3 months the year he was diagnosed.

He has been through a lot. Yet, he takes it all in stride and has taught

me so much about courage. He has the best sense of humor and I know all

these traits will serve him well.

You guys are an incredible group of people and are so kind to me. Thank

you so much for being there. I wish you all the best and hope for

healthier days.

Thanks again.

, mom to Rob, 15

On Thu, 12 Aug 2004 16:33:46 -0600 " Amy Griswold "

writes:

Hi ,

Most likey they did get enough tissue to test. The normally do a

spot check while you are still on the table to make sure they got enough

and that they have the right kind of tissue....I can attest to this as

they had to come back and nab 3 more samples from me after taking the

first 3. It is highly possible he has another form of kidney disease.

Many kidney diseases present themselves in the same way and the biopsy

determines just what disease you are dealing with. If they ruled out

IgAN they will be checking for other diseases that could be causing the

protein and blood in the urine. Waiting is the hardest part but

hopefully you will get the full results soon. When did he have his

biopsy again? It took just over 2 weeks to get my full reports back.

Many kidney diseases are treated in the same way as IgAN so don't feel

you need to leave the group if he doesn't have IgAN.

Hang in there and let us know what the find out.

Amy

Rob's biopsy results

and anybody else:

Rob's rheumatologist sent me an email, because Rob is waiting to go

back

on his arthritis meds pending results from the renal biopsy results

last

friday.

He said that the preliminary reports are inconclusive, but no IgA

nephropathy. Does this mean that they didn't get enough tissue? We

don't

meet with the nephrologist until 8/28.

Thanks for any thoughts you have on the matter.

and Rob 15

PS His BUN and creatinine are normal, but has some protein, large

blood,

and granular casts in his urine.

[Guest guest]

Wow he does have an awesome neph! I do hope they are able to figure out why he

is spilling protein and blood. It sounds like Rob is a wonderful kid. It's

humbling to see how many of these kids take serious illness in stride. Makes me

think twice about whining when I'm achy.

And yes they took 6 samples. My neph did the first three, the lab tech checked

them, and then my neph walked back in the room with a smile on his face and said

" guess what..we need a few more. " I was on happy drugs and said " go right

ahead " He went really deep on the final sample and it scared the

anesthesiologist so much that she came up to my hospital room the next morning

to make sure I was o.k. She was wide eyed with her " I've never seen one go so

deep before, I just wanted to make sure you were doing alright. " I thought it

was rather funny and it was touching that she checked up on me. I felt a pinch

on the final one but beyond that it wasn't too bad. She was also concerned

about me not having enough happy drugs. My neph won't allow them to administer

anything to his patients until he is in the room, he took one look at the amount

she was going to give me (for my weight, I'm overweight) and told her " Half it "

She was a bit shocked but did it anyhow. Thru the whole procedure she was

constantly asking " Are you sure you are ok?? " I'm glad my neph toned down the

drugs or I would have been completely out of it during the entire thing, instead

I was awake and mellow. It took me a long time to feel " normal " again in that

area of my body though due to the number of samples and the high prednisone I

started on right after it.

Amy

Re: Rob's biopsy results/AMY

Amy:

I did get an email from the nephrologist (he is awesome!) and here it is:

" The results are VERY preliminary, does not look like IgA nephropathy at

this time, too early to say what else it might be, still waiting on some

special tests, should have results by end of next week. We will discuss

all possibilities regarding diagnosis and treatment on the 28th (sorry

to keep you waiting!). If I hear anything conclusive before that, you

will be the next to know. "

Thanks for your email, Amy. I can't believe that they took 6 samples from

you! They took 2 from Rob. His biopsy was last Friday 8/6. The

nephrologist came in on his day off to meet with us to discuss the

biopsy, and the day of the biopsy, he was not on rotation to do it but

met us there and introduced us to the doctor who did. I can't say enough

about how kind this guy is. I can email him with questions at any time.

He is the director of the nephrology department at Cincinnati Children's

Hospital. We feel very blessed that Rob is in his care.

Rob has juvenile ankylosing spondylitis. It has affected his knees, hips

and spine. He couldn't walk for about 3 months the year he was diagnosed.

He has been through a lot. Yet, he takes it all in stride and has taught

me so much about courage. He has the best sense of humor and I know all

these traits will serve him well.

You guys are an incredible group of people and are so kind to me. Thank

you so much for being there. I wish you all the best and hope for

healthier days.

Thanks again.

, mom to Rob, 15

[Guest guest]

Amy;

Oh my, what an ordeal you went through! I'm glad that Rob had a general

anesthetic. Last year, he had to have his hip drained and injected, and

the meds, instead of relaxing him, made him giddy and he was jumping all

over the table. I had to help hold him down. For obvious reasons, we

couldn't risk that scenario again. So thus he had the general.

I'm sorry it took you so long to heal. Rob is still pretty sore. I guess

we should expect that for a few weeks and hopefully will subside.

Thanks again for your thoughts and advice.

and Rob 15

On Thu, 12 Aug 2004 20:13:32 -0600 " Amy Griswold "

writes:

Wow he does have an awesome neph! I do hope they are able to figure out

why he is spilling protein and blood. It sounds like Rob is a wonderful

kid. It's humbling to see how many of these kids take serious illness in

stride. Makes me think twice about whining when I'm achy.

And yes they took 6 samples. My neph did the first three, the lab tech

checked them, and then my neph walked back in the room with a smile on

his face and said " guess what..we need a few more. " I was on happy drugs

and said " go right ahead " He went really deep on the final sample and it

scared the anesthesiologist so much that she came up to my hospital room

the next morning to make sure I was o.k. She was wide eyed with her

" I've never seen one go so deep before, I just wanted to make sure you

were doing alright. " I thought it was rather funny and it was touching

that she checked up on me. I felt a pinch on the final one but beyond

that it wasn't too bad. She was also concerned about me not having

enough happy drugs. My neph won't allow them to administer anything to

his patients until he is in the room, he took one look at the amount she

was going to give me (for my weight, I'm overweight) and told her " Half

it " She was a bit shocked but did it anyhow. Thru the whole procedure

she was constantly asking " Are you sure you are ok?? " I'm glad my neph

toned down the drugs or I would have been completely out of it during the

entire thing, instead I was awake and mellow. It took me a long time to

feel " normal " again in that area of my body though due to the number of

samples and the high prednisone I started on right after it.

Amy

Re: Rob's biopsy results/AMY

Amy:

I did get an email from the nephrologist (he is awesome!) and here it

is:

" The results are VERY preliminary, does not look like IgA nephropathy

at

this time, too early to say what else it might be, still waiting on

some

special tests, should have results by end of next week. We will

discuss

all possibilities regarding diagnosis and treatment on the 28th (sorry

to keep you waiting!). If I hear anything conclusive before that, you

will be the next to know. "

Thanks for your email, Amy. I can't believe that they took 6 samples

from

you! They took 2 from Rob. His biopsy was last Friday 8/6. The

nephrologist came in on his day off to meet with us to discuss the

biopsy, and the day of the biopsy, he was not on rotation to do it but

met us there and introduced us to the doctor who did. I can't say

enough

about how kind this guy is. I can email him with questions at any time.

He is the director of the nephrology department at Cincinnati

Children's

Hospital. We feel very blessed that Rob is in his care.

Rob has juvenile ankylosing spondylitis. It has affected his knees,

hips

and spine. He couldn't walk for about 3 months the year he was

diagnosed.

He has been through a lot. Yet, he takes it all in stride and has

taught

me so much about courage. He has the best sense of humor and I know all

these traits will serve him well.

You guys are an incredible group of people and are so kind to me. Thank

you so much for being there. I wish you all the best and hope for

healthier days.

Thanks again.

, mom to Rob, 15