Update on Robbie/endo & nephro - virus? flare? and a silly OT Pj story - it wouldn't be Val without the ramble.

October 28, 2004

Hello guys - sorry I didn't email yesterday - I didn't even get online after the

long day we had. First things first:

Endocrinology Appt - It was supposed to be the same Doc, but we ended up seeing

a different one - so Robbie's life story beginning with 28 week preemie

beginning had to be told. Then he said that the results of the mineral bone

density scan had changed little - and that he was still osteopenic. There were

changed, and I don't know why it said " Osteoporosis - high risk for fractured "

in two parts of the report (the parts that addressed the spinal and hip

specificly) - but it's possible that they are using standards for peds that are

different - who knows - or is he in a borderline area? Regardless - it has

gotten a little worse, at the very least - the Doc basicly said " Good job

keeping the calcium level up - you are really doing a lot to keep it from

getting worse. He said that in an adult dealing with osteoporosis issues, they

would be saying a big " Whoo hoo - it didn't get worse " because that would mean a

lot for a more elderly person, but in Rob's case his bone health hasn't improved

and that's an issue. Then he said " Has his nephrologist expressed a cocern over

the high calcium and risk for kidney stones? He's maxed out on calcium - and in

a teenager we would be worried about kidney stones - I don't know about kids

's age and the concern for kidney stones. " ?????? He reviewed his bone

age study from a year ago - and wondered if he was still as delayed as before -

he discussed the possibility of repeating it - then when he discussed with the

staff physician, he said there was no point in checking, they were sure it would

still reveal that he is delayed. He said that his labs were all normal from an

endocrinology standpoint, with the exception of the Alk phos - which is

generally quite high in a child WHO IS GROWING. Robbie's is low - at the level

of a MATURE ADULT WHO HAS STOPPED GROWING. Duh - he's not growing, and the Alk

phos shows that. The bottom line is that the hope is that the new rheumy will

change meds, and manage to get Robbie off of the steriods and everything will be

ok. They want to see him in a year (maybe he said 6 months - and repeat the

dexa scan again in a year - but it seems like both were in a year - which is

another year of virtually no growth - by the time we are able to taper Robbie's

dose, if we are able to. The only thing that kept me from losing my mind was

the rheumy at AJAO who said that in order to get the best results from growth

hormone the child needs to not be having a lot of active disease present and

needs to be on a low maintenance dose, if not off the steriods completely.

Maybe giving Robbie growth hormone now isn't the time, maybe it's setting him

for more side affects and little positive affects at a time when he is dealing

with so many issues already. I am concerned that they feel ok with letting the

bond density issue hang as it is - we need to be more aggressive in that area I

think - do we have to wait until he slides into home and fractures something?

Then the Nephrology appointment in the afternoon. His Nephrologist came out to

the waiting room with the other one )(fellow, resident?) who was going to do the

initial history and exam and immediately asked me why they weren't more

concerned about his growth - what are they doing? We talked briefly in the

waiting room about the flare in April and what has been going on since - then

more at length in the office after the first guy did the initial stuff. This

was a routine follow up - and his kidney function appears perfect. If the

cyclosporine has caused any damage it isn't yet measurable. She said that

caught soon enough, that any damage caused by the cyclosporine was reversible if

caught soon enough. She said that seeing her every year, and monitoring

urinalysis and other labs periodically in between visits with her would keep

that in check. She said the things to watch for would be his creatine level

going up to 7 or 8 and staying there - that currently he is around 5, I am also

to watch for any protein in the urine - particularly if it isn't associated with

symptoms that he generally has with his nephrotic syndrome. And I am to keep an

eye on his blood pressure - I am to let her know if any of this occurs - (and

she said if they start doing anything crazy with the cyclosporine.) She wanted

to know when they raised the cyclosporine - she checked the level in the

labwork, and said that the level was ok - that when they intially use it for

kidney issues, they look for a level from about 150 to a higher number that I

can't remember right now, and when they taper to a more maintenance dose they

are looking at levels around the 100 that Robbie is at right now. She said that

from a nephrology standpoint they would only start the cyclosporine to attempt

to be able to taper the steriods - and that she wondered if both were needed.

She said that if they are going to have the steriods at this high a level, she

would vote to get rid of the cyclosporine. When I asked her if there was a

reason to taper the cyclosporine - and she said that physically we could stop it

tomorrow - and his body wouldn't have a reaction specific to the withdrawal of

cyclosporine - but that regarding the JRA - we have no way of knowing if it is

helping, or to what degree - and that tapering would be a way to measure that.

She did say it wouldn't be wise to try tapering both at the same time. We

discussed my run in with rheumatology the day we discussed trying kineret, and

my frustration with the everchanging staff, and them consistently asking if he

is taking the cyclosporine for his kidneys. She said if they don't know why

he's taking it - another reason to stop it. (She wasn't suggesting we stop

without discussing everything with a rheumy - just expressing her opininion.

She did say that something absolutely needs to be done about Robbie's growth -

and that SHE HEARS ME - and if I find no one else does as we continue to the new

rheumy I am to call her. She would like for Robbie to see the new rheumy at

Children's - that she has heard good things there - she said she wouldn't refer

any of her patients to the one at Hopkins (a sentiment I have heard from enough

sources to take heed and stear clear) - she has never heard of the Dr in

Ellicott city - but she wants me to send her his phone number - she wants to

call him personally to discuss her concerns about the continued use of

cyclosporine and Robbie's kidneys - and discuss her concerns about the prolonged

use of the steriods, without attempting to try another medication to allow him

to at least get to a low enough dose so that we can do something about his

growth and bone density issues. She said that if we continue the cyclosporine,

and see any signs of a problem that we will need to do a kidney biopsy to assess

the kidney health. Why couldn't she be a rheumy or a endo? Well, at least I

know that she has my back (she actually said that) and that if Robbie's kidney

issues resurface he's in good hands.

So one step forward and 10 steps back.

Robbie woke up this morning complaining of pain in his back, legs and wrists

again. He'd had some complaints last night - but not too much. This is of

course on top of his pain Saturday and sleeping all day Saturday. Actually,

he's had some complaints of pain everyday this week - but no limping.

He said is was worse today, I gave him Motrin with his meds, and told him if he

didn't get better to go see the nurse and she would call me.

We stayed up to watch the Red Sox win last night - and overslept a bit this

morning and were rushing around (I have to tell this - though a little

unrelated) - Robbie usually manages to drip all over when he brushes his teeth -

so after he eats breakfast, he takes his medicine, brushes his teeth and then

gets dressed. This morning I was finishing with my hair when he finished his

medicine - so I told him to put his jeans, socks, etc on and wait to change into

his shirt until after he brushed. He brushed his teeth, then when he came out

of the bathroom I was going to my room to grab my watch, told him to put his

shirt and shoes on, and coat and be ready to go out the door. When I went to

pick him up at aftercare - I thought I saw him through the window but thought -

that's not his shirt - looked again as I walked in the door - and he was going

to get his backpack, and I thought " what shirt is he wearing - did he get sick

and the nurses office gave him a different shirt? - but they always call me,

then I was signing him out - he walked up (slowly) and I thought " Oh no, that's

his pj's shirt! I SENT MY BABY TO SCHOOL WITH HIS PJ SHIRT!!!! WHAT KIND OF

MOTHER AM I??? I looked at him and said " Robbie, what are you wearing - and I

cracked up laughing - he looked a little embarrassed - then said " MOM " and then

he cracked up laughing. (I kept thinking - if he'd disapeared today - I would

have described exactly the jeans, his socks right down to the little black stars

on the side, and the fact that he was wearing batman underwear with a blue

waistband - and had it to the T - and would have described perfectly the

spiderman shirt that was still laying on his bed.) As we got ready to go he

told me he was hurting, so I took his backpack and lunchbox from him. Walking

to the car, I realized that he was walking strangely. Then he starts telling me

that he asked to go to the nurses office to borrow a shirt - but the teacher

wouldn't let him. I said - it's ok, no one knew - but he said " Mom, they

did... " He wouldn't tell me - but he was almost teary when we got to the car.

I told him I was so sorry, if I had realized he'd forgot to go back and change

into his shirt. As we neared the car, I could tell he was really in pain from

the way he moved, and I ended up having to help him get in the car. In the car

he told me he got worse during recess, and then in PE, that he was up playing in

his aftercare - but it was hurting real bad while he played. He then said, that

he knew it would get worse,that's why he should have stayed home today. I asked

him why he didn't go to the nurses office - but he didn't answer - he just

cried,saying he felt really bad and just wanted to go home. He had trouble

getting out of the car, and I ended up carrying him into the house. His temp

was 102.2 We had dinner so I could give him his medicine, and Motrin (out of

tylenol) - he lay on the couch for a couple of hours, did the jra shuffle to and

from the bathroon and needed help with his clothes when he got there. He was

able to move around a little better after a couple of hours and did his homework

and went to bed - afebrile. So, I guess we'll see how things are in the am -

and go from there. As silly as it sounds - I keep thinking that if he is

starting to flare, that I hope he perks up for the next couple of days - just to

get through his ballgame and trick or treat - he will be so disapointed if

misses that game! Darn that ol Arthur - trying to hone in on the game. Maybe

it's just a little virus or mini-flare (trying to deny the jra shuffle here) -

%$#%^ & & ^%. Well - I guess that is all I have to say - my head is hurting, so

I'm not going to try to proofread this - so forgive any odd typos. I hope

everyone is feeling well and I hope to have better things to say in the am.

Val

Rob's Mom (7,systemic)

October 28, 2004

> Hello guys - sorry I didn't email yesterday - I didn't even get

online after the long day we had. First things first:

....

> Val

> Rob's Mom (7,systemic)

Hello Val,

I was reading about Rob's hard times and you said he's a 28 weeker.

My kiddo nne is also a 28 weeker and she was a rather sick

little preemie, but she pulled through and hasn't had any problems

since she was 2. She was a really healthy kid actually until that

ankle of hers started swelling. Anyway, are preemies more likely to

develop JRA or is this just a coincidence? Thanks and I wish Rob a

fantastic game AND trick-o-treating!

Annie ( & nne, 6, pauciarticular, diagnosed two weeks ago)

October 29, 2004

Val:

You know I always love your emails...very detailed and so full of love

for your handsome young man...you are an awesome mom and Rob is such an

awesome kid. So please, don't change the way you write! We all enjoy the

little details you give..

Well, it sure sounds like everything is going to hinge on this

rheumatology appointment. I had forgotten until you mentioned it, but

those bone density tests do have to be adjusted for pediatric results. I

remember my Rob's first one said osteoporotic, but then the endo took a

look and correlated it with ped results and he was in fact, osteopenic.

Still, your Rob's bone density has gotten worse. He is 7 now. He does

have time on his side as far as rebuilding bone, but if and only if

someone will take the plunge and get aggressive about new meds and

getting him off the steroids. This new rheumy has GOT to do it for

Rob...and I do have gut feelings that he will. I know that you will go in

armed with every record and piece of documentation. I hope that they have

lots of time slated for his visit! We will all be praying for a good

rheumy visit and then the ammunition that you need to get the endo

actively treating Rob.

I also wanted to remind you that my Rob's osteopenia did resolve after 6

months of growth hormone therapy. So at your Rob's young age, it

certainly is reversible. At least, once the steroids are stopped. Did

they discuss putting him on Fossamax or Actonel, or is he already on one

of those??

Oh, by the way, there are not really any side effects from growth

hormone! It is pretty much just replacing the growth hormone that the

body isn't producing on its own.

If I were you, I wouldn't wait a year for Robbie to be rechecked...I'd go

again in 6 months.

The neph sounds good. So she is going to call the new rheumy before

Robbie sees him? That would be awesome!

I know that Robbie still has to get through the colonoscopy on 11/9. When

is the rheumy appt? I hope hope hope that the new rheumy will be Rob's

biggest ally and get things moving in a hurry. Hope Robbie feels up to

all the activities this weekend and has a blast. Give him hugs from Rob

and I!

Love,

and Rob 15 Spondy

On Fri, 29 Oct 2004 00:00:06 -0400 carneyval@... writes:

Hello guys - sorry I didn't email yesterday - I didn't even get online

after the long day we had. First things first:

Endocrinology Appt - It was supposed to be the same Doc, but we ended up

seeing a different one - so Robbie's life story beginning with 28 week

preemie beginning had to be told. Then he said that the results of the

mineral bone density scan had changed little - and that he was still

osteopenic. There were changed, and I don't know why it said

" Osteoporosis - high risk for fractured " in two parts of the report (the

parts that addressed the spinal and hip specificly) - but it's possible

that they are using standards for peds that are different - who knows -

or is he in a borderline area? Regardless - it has gotten a little

worse, at the very least - the Doc basicly said " Good job keeping the

calcium level up - you are really doing a lot to keep it from getting

worse. He said that in an adult dealing with osteoporosis issues, they

would be saying a big " Whoo hoo - it didn't get worse " because that would

mean a lot for a more elderly person, but in Rob's case his bone health

hasn't improved and that's an issue. Then he said " Has his nephrologist

expressed a cocern over the high calcium and risk for kidney stones?

He's maxed out on calcium - and in a teenager we would be worried about

kidney stones - I don't know about kids 's age and the concern for

kidney stones. " ?????? He reviewed his bone age study from a year ago -

and wondered if he was still as delayed as before - he discussed the

possibility of repeating it - then when he discussed with the staff

physician, he said there was no point in checking, they were sure it

would still reveal that he is delayed. He said that his labs were all

normal from an endocrinology standpoint, with the exception of the Alk

phos - which is generally quite high in a child WHO IS GROWING. Robbie's

is low - at the level of a MATURE ADULT WHO HAS STOPPED GROWING. Duh -

he's not growing, and the Alk phos shows that. The bottom line is that

the hope is that the new rheumy will change meds, and manage to get

Robbie off of the steriods and everything will be ok. They want to see

him in a year (maybe he said 6 months - and repeat the dexa scan again in

a year - but it seems like both were in a year - which is another year of

virtually no growth - by the time we are able to taper Robbie's dose, if

we are able to. The only thing that kept me from losing my mind was the

rheumy at AJAO who said that in order to get the best results from growth

hormone the child needs to not be having a lot of active disease present

and needs to be on a low maintenance dose, if not off the steriods

completely. Maybe giving Robbie growth hormone now isn't the time, maybe

it's setting him for more side affects and little positive affects at a

time when he is dealing with so many issues already. I am concerned that

they feel ok with letting the bond density issue hang as it is - we need

to be more aggressive in that area I think - do we have to wait until he

slides into home and fractures something?

Then the Nephrology appointment in the afternoon. His Nephrologist came

out to the waiting room with the other one )(fellow, resident?) who was

going to do the initial history and exam and immediately asked me why

they weren't more concerned about his growth - what are they doing? We

talked briefly in the waiting room about the flare in April and what has

been going on since - then more at length in the office after the first

guy did the initial stuff. This was a routine follow up - and his kidney

function appears perfect. If the cyclosporine has caused any damage it

isn't yet measurable. She said that caught soon enough, that any damage

caused by the cyclosporine was reversible if caught soon enough. She

said that seeing her every year, and monitoring urinalysis and other labs

periodically in between visits with her would keep that in check. She

said the things to watch for would be his creatine level going up to 7 or

8 and staying there - that currently he is around 5, I am also to watch

for any protein in the urine - particularly if it isn't associated with

symptoms that he generally has with his nephrotic syndrome. And I am to

keep an eye on his blood pressure - I am to let her know if any of this

occurs - (and she said if they start doing anything crazy with the

cyclosporine.) She wanted to know when they raised the cyclosporine -

she checked the level in the labwork, and said that the level was ok -

that when they intially use it for kidney issues, they look for a level

from about 150 to a higher number that I can't remember right now, and

when they taper to a more maintenance dose they are looking at levels

around the 100 that Robbie is at right now. She said that from a

nephrology standpoint they would only start the cyclosporine to attempt

to be able to taper the steriods - and that she wondered if both were

needed. She said that if they are going to have the steriods at this

high a level, she would vote to get rid of the cyclosporine. When I

asked her if there was a reason to taper the cyclosporine - and she said

that physically we could stop it tomorrow - and his body wouldn't have a

reaction specific to the withdrawal of cyclosporine - but that regarding

the JRA - we have no way of knowing if it is helping, or to what degree -

and that tapering would be a way to measure that. She did say it

wouldn't be wise to try tapering both at the same time. We discussed my

run in with rheumatology the day we discussed trying kineret, and my

frustration with the everchanging staff, and them consistently asking if

he is taking the cyclosporine for his kidneys. She said if they don't

know why he's taking it - another reason to stop it. (She wasn't

suggesting we stop without discussing everything with a rheumy - just

expressing her opininion. She did say that something absolutely needs to

be done about Robbie's growth - and that SHE HEARS ME - and if I find no

one else does as we continue to the new rheumy I am to call her. She

would like for Robbie to see the new rheumy at Children's - that she has

heard good things there - she said she wouldn't refer any of her patients

to the one at Hopkins (a sentiment I have heard from enough sources to

take heed and stear clear) - she has never heard of the Dr in

Ellicott city - but she wants me to send her his phone number - she wants

to call him personally to discuss her concerns about the continued use of

cyclosporine and Robbie's kidneys - and discuss her concerns about the

prolonged use of the steriods, without attempting to try another

medication to allow him to at least get to a low enough dose so that we

can do something about his growth and bone density issues. She said that

if we continue the cyclosporine, and see any signs of a problem that we

will need to do a kidney biopsy to assess the kidney health. Why

couldn't she be a rheumy or a endo? Well, at least I know that she has

my back (she actually said that) and that if Robbie's kidney issues

resurface he's in good hands.

So one step forward and 10 steps back.

Robbie woke up this morning complaining of pain in his back, legs and

wrists again. He'd had some complaints last night - but not too much.

This is of course on top of his pain Saturday and sleeping all day

Saturday. Actually, he's had some complaints of pain everyday this week

- but no limping.

He said is was worse today, I gave him Motrin with his meds, and told him

if he didn't get better to go see the nurse and she would call me.

We stayed up to watch the Red Sox win last night - and overslept a bit

this morning and were rushing around (I have to tell this - though a

little unrelated) - Robbie usually manages to drip all over when he

brushes his teeth - so after he eats breakfast, he takes his medicine,

brushes his teeth and then gets dressed. This morning I was finishing

with my hair when he finished his medicine - so I told him to put his

jeans, socks, etc on and wait to change into his shirt until after he

brushed. He brushed his teeth, then when he came out of the bathroom I

was going to my room to grab my watch, told him to put his shirt and

shoes on, and coat and be ready to go out the door. When I went to pick

him up at aftercare - I thought I saw him through the window but thought

- that's not his shirt - looked again as I walked in the door - and he

was going to get his backpack, and I thought " what shirt is he wearing -

did he get sick and the nurses office gave him a different shirt? - but

they always call me, then I was signing him out - he walked up (slowly)

and I thought " Oh no, that's his pj's shirt! I SENT MY BABY TO SCHOOL

WITH HIS PJ SHIRT!!!! WHAT KIND OF MOTHER AM I??? I looked at him and

said " Robbie, what are you wearing - and I cracked up laughing - he

looked a little embarrassed - then said " MOM " and then he cracked up

laughing. (I kept thinking - if he'd disapeared today - I would have

described exactly the jeans, his socks right down to the little black

stars on the side, and the fact that he was wearing batman underwear with

a blue waistband - and had it to the T - and would have described

perfectly the spiderman shirt that was still laying on his bed.) As we

got ready to go he told me he was hurting, so I took his backpack and

lunchbox from him. Walking to the car, I realized that he was walking

strangely. Then he starts telling me that he asked to go to the nurses

office to borrow a shirt - but the teacher wouldn't let him. I said -

it's ok, no one knew - but he said " Mom, they did... " He wouldn't tell

me - but he was almost teary when we got to the car. I told him I was so

sorry, if I had realized he'd forgot to go back and change into his

shirt. As we neared the car, I could tell he was really in pain from the

way he moved, and I ended up having to help him get in the car. In the

car he told me he got worse during recess, and then in PE, that he was up

playing in his aftercare - but it was hurting real bad while he played.

He then said, that he knew it would get worse,that's why he should have

stayed home today. I asked him why he didn't go to the nurses office -

but he didn't answer - he just cried,saying he felt really bad and just

wanted to go home. He had trouble getting out of the car, and I ended up

carrying him into the house. His temp was 102.2 We had dinner so I

could give him his medicine, and Motrin (out of tylenol) - he lay on the

couch for a couple of hours, did the jra shuffle to and from the bathroon

and needed help with his clothes when he got there. He was able to move

around a little better after a couple of hours and did his homework and

went to bed - afebrile. So, I guess we'll see how things are in the am -

and go from there. As silly as it sounds - I keep thinking that if he is

starting to flare, that I hope he perks up for the next couple of days -

just to get through his ballgame and trick or treat - he will be so

disapointed if misses that game! Darn that ol Arthur - trying to hone in

on the game. Maybe it's just a little virus or mini-flare (trying to

deny the jra shuffle here) - %$#%^ & & ^%. Well - I guess that is all I

have to say - my head is hurting, so I'm not going to try to proofread

this - so forgive any odd typos. I hope everyone is feeling well and I

hope to have better things to say in the am.

Val

Rob's Mom (7,systemic)

October 31, 2004

Hi Annie,

Thanks for the well wishes - Robbie did play his game today and went trick or

treating - but I believe he is already paying for it - though he says it's worth

it. I wrote a really long description of the last couple of days in another

reply - so I won't go into all that again and repeat myself.

Welcome to the group - though it pains me to hear of another child suffering

with this - I am really behind in reading the posts - but I hope that nne

is getting the care she needs and is doing well. The early days are the hardest

- and my heart goes out to you.

Everything I have been told indicates that being a preemie didn't put our

children at greater risk of developing JRA. I remember reading one study that

indicated that children with a high birth weight were at a higher risk - which

certainly wouldn't apply to our 28 weekers. I know that there is at least one

other preemie on this list - but I can't remember who. It would be interesting

to find more data on this - though I don't know that there has been much

research in a possible connection there - particularly since the one study

seemed to indicate the high birth weight as a possible factor for some. I have

wondered if there is a possible connection to systemic onset - and possible

growth delay - but that wouldn't apply to your nne. The more we know, the

Sign In

Update on Robbie/endo & nephro - virus? flare? and a silly OT Pj story - it wouldn't be Val without the ramble.

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