Re: Reply to & Update on Val & Robbie (long) was [JRA]Val

[Guest guest]

Hi ,

Robbie is still doing well - he had basketball practice last night - but seemed

a little off - fell more than usual, got knocked off his feet easier in a rush

for the ball, that kind of thing. I think he may have been overtired (another

one of those words that sends little alarms going off in my head) but when we

got home he had a low grade fever - but better this morning. (I keep hitting the

snooze on that alarm...) He saw rheumatology a couple of weeks ago - and they

were pleased with how he is doing, though he didn't see the same Doctor - the

snow delayed us and he had military training - and the Doc that we did see was a

totally new face, as were many on the " team " - (one asked what dose of MTX we

were at, so I had to calmly point out that Rob isn't taking MTX) anyway - they

chose to wait on tapering any more, keeping Rob at 3 mg. The one Doc we talked

with, pointing out how at this level even the smallest drop can trigger a flare

(like he had to tell me) - anyway we see rheumy again in 2 or 3 months - I'll

have to check his chart. He hadn't had labs drawn yet - we got them done the

same day - and the sed rate and some of the other things have increased quite a

bit (though the sed rate was still under 40 - I don't have my copy here - still

nowhere near the >100 we have seen in the past) - so when the regular rheumy

called regarding the labs, I let him know that Robbie had cold symptoms so that

was probably what was going on. The rheumy that saw Rob said that his heart

rate was a little irregular - not the murmur they have heard in the past - just

a slight irregularity. They said there was no need to change anything - but to

continue watching him and have him see his regular ped at the end of the month.

Since then, Rob developed an ear infection and conjunctivitis - so last Friday

we were back at the Doctor, and starting meds. So he goes for a recheck of the

ear when he sees the ped at the end of the month. They didn't mention his heart

rate when we were in for his ear - and it didn't occur to me to ask for some

reason.

Regarding endo - we are about half way through the six month " watch and see " bit

now. He, of course already had the bone age study, and the bone density

revealed osteopenia, so we upped his Calcium considerably from what he was

taking before. They did some lab work when we saw them, so he may have had the

stim test - I will have to go back and take another look. Robbie does have

plenty of time for growth - so that's why I am not going completely nuts over

this.... but it isn't just cosmetic like you said - though that does have it's

affect on Rob. All the kids tower over him, he needs a stool to reach the child

size sinks in school - there are just a lot of things.

The cost of your Rob's growth hormone is unbelievable. I am glad that Eli Lilly

is working with you. I saw your other post on the paperwork issue - I hope all

of that is now resolved. $48,000 a year seems criminal though. With our

military TRICARE, the hormone would be covered if Rob is started on it - I think

- which is probably another reason to wait and see - the cost has to play into

it. They have changed me from Prilosec because of the cost and I am taking

another, less effective med now.

I think that is everything on Rob. My original follow up was cancelled because

of snow - but I did see the Doc last week - and my blood count has improved -

though it's still low. My hgb is up to 11 - which is pretty good from

8.something - but my iron is still quite low - I don't have the results handy -

but overall improvement - just not as much as she would like to see, and she

still wants to identify the underlying cause. They ruled out my cycle, since it

is relatively light except for the first day and unchanged since I had Rob. So

off to the GI clinic I am going for a work up to make sure there is nothing

undetected going on there. (this is not going to be pleasant) - she also did an

chest xray - because my laryngitis did not clear up until the end of Jan - and I

still have frequent hoarseness. She wanted to make sure that I didn't have a

goiter (apparrently they sometimes grow into the chest and not always visible on

the neck) pressing on the nerve that affects the larynx. That was all clear

(though the xray report did comment on " mild degenerative changes in the

thoracic spine " this aging stuff is for the birds...). Anyway, we were just

going to wait and see, but when she called me about the GI referral, she noted

that my voice was hoarse on the phone - so off to ENT to check that out. I

think that is just a result of my allergies - it's always worse in the winter.

Overall, I am feeling much better - and the outside temp is even decent today,

so spring is on the way! Thanks for asking! I keep trying to read and keep up

on everybody - but my home computer is still down and work has been really busy

- I often eat lunch at my desk to try to stay on top of things. I hope that you

guys are staying well and keeping warm!

Val

Rob's Mom (6,systemic)

In a message dated 2/18/2004 4:54:18 PM Eastern Standard Time,

snooksmama@... writes:

>

>

> Val:

> I'm glad that you updated on Robbie...

> At least, even if they wait to see him again for another 6 months, he

> does have plenty of time for growth. But I have since learned that growth

> issues are not just cosmetic. Poor growth can affect the bone density and

> internal organs, so its not just 'for looks' or to fit in. Although for

> my Rob, the growth was important to him. Just being able to reach the

> upper kitchen cabinets has been a huge victory for him!

> Did Robbie have a stim test yet? If not, that will likely be the next

> step. We had a bone age, waited 6 months, little growth had occurred, and

> then Rob had the growth hormone stim test.

> Growth hormone is quite expensive, but most of the drug manufacturers

> will donate the medication for a fraction of the cost. For example, Rob's

> dose costs $48,000 a year , and Eli Lilly is charging us $1500.

> How is your blood count doing these days?

> and Rob 14 Spondy

>

> On Wed, 18 Feb 2004 12:28:00 -0500 carneyval@... writes:

> > Hi Soili,

> > I agree with , but I would approach the rheumy again, and try

> > to avoid waiting the six months. Rob's rheumy kept waiting, and his

> > pediatrician finally took action - after the Nephrologist said - we

> > need to do something! (the old saying too many cooks is coming to

> > mind) - anyway - Rob was referred to endocrinology, the bone study

> > showed Rob's bone age to be inbetween 3 - 4 (He's 6) - and he hadn't

> > shown any substantial growth for a year. The first appt they

> > discussed everything, ordered some tests, and measured him on their

> > equipment. Then when we went back a month later to discuss all of

> > the results, they determined he had grown one half a centimeter, and

> > based on that decided to wait six months and evaluate him again -

> > even with saying that their original measurement may not have been

> > correct. It bothers me because he is halfway through first grade,

> > and is wearing Toddler sizes - and we are just waiting. Of course,

> > he has been on oral steriods (and some IV) since before diagnosis -

> > and has had some growth when the dose has gotten smaller in the

> > past. JRA itself can affect growth according to the literature I

> > have read - it's not just the meds. I found out that cyclosporine

> > can also affect the growth, which Rob has also been on for a long

> > time. Rob too is looking thin (again, since the dose has come back

> > down) and has dark circles - under his eyes and looks pale. Some

> > may be just due to the winter - though he does have some time

> > outside on warmer days - and he is keeping active and has tons of

> > energy - looking at him though, I keep waiting for the signs of a

> > flare - he has that look about him that I am trying not to

> > recognize. He did have some knee pain yesterday morning - so all

> > day at work I wondered how he would be when I picked him up - but he

> > was running around playing, no pain and ready for tuesday night

> > skating. Boy did I ramble off from what I intended. My whole point

> > really is that the endocrinologist may want to take time to observe

> > and watch, just like Rob's has - in spite of having a record of

> > almost no growth for a year in his records already - so why wait

> > six months before you even get Juho seen?

> > Best wishes!

> > Val

> > Rob's Mom (6,systemic)

> >

> > In a message dated 2/18/2004 11:27:17 AM Eastern Standard Time,

> > soilimar@... writes:

> >

> > >

> > >

> > >

> > > > I would urge you to take Juho to a pediatric

> > > > endocrinologist who can determine the source of Juho's growth

> > delay.

> > > > Keep us posted on Juho!

> > > > How are your other children doing?

> > > > and Rob 14 Spondy

> > >

> > > Hi ,

> > > thanks. I hope Juho will be referred to ped. endocrinologist,

> > that's

> > > what I asked for but the rheumy wanted to wait and see for 6 more

> >

> > > months.

> > > The others are doing ok, Juha's polyarthritis is in medicated

> > > remisssion.

> > > Thanks again,

> > > Soili

> > >

> > >

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi ,

Robbie is still doing well - he had basketball practice last night - but seemed

a little off - fell more than usual, got knocked off his feet easier in a rush

for the ball, that kind of thing. I think he may have been overtired (another

one of those words that sends little alarms going off in my head) but when we

got home he had a low grade fever - but better this morning. (I keep hitting the

snooze on that alarm...) He saw rheumatology a couple of weeks ago - and they

were pleased with how he is doing, though he didn't see the same Doctor - the

snow delayed us and he had military training - and the Doc that we did see was a

totally new face, as were many on the " team " - (one asked what dose of MTX we

were at, so I had to calmly point out that Rob isn't taking MTX) anyway - they

chose to wait on tapering any more, keeping Rob at 3 mg. The one Doc we talked

with, pointing out how at this level even the smallest drop can trigger a flare

(like he had to tell me) - anyway we see rheumy again in 2 or 3 months - I'll

have to check his chart. He hadn't had labs drawn yet - we got them done the

same day - and the sed rate and some of the other things have increased quite a

bit (though the sed rate was still under 40 - I don't have my copy here - still

nowhere near the >100 we have seen in the past) - so when the regular rheumy

called regarding the labs, I let him know that Robbie had cold symptoms so that

was probably what was going on. The rheumy that saw Rob said that his heart

rate was a little irregular - not the murmur they have heard in the past - just

a slight irregularity. They said there was no need to change anything - but to

continue watching him and have him see his regular ped at the end of the month.

Since then, Rob developed an ear infection and conjunctivitis - so last Friday

we were back at the Doctor, and starting meds. So he goes for a recheck of the

ear when he sees the ped at the end of the month. They didn't mention his heart

rate when we were in for his ear - and it didn't occur to me to ask for some

reason.

Regarding endo - we are about half way through the six month " watch and see " bit

now. He, of course already had the bone age study, and the bone density

revealed osteopenia, so we upped his Calcium considerably from what he was

taking before. They did some lab work when we saw them, so he may have had the

stim test - I will have to go back and take another look. Robbie does have

plenty of time for growth - so that's why I am not going completely nuts over

this.... but it isn't just cosmetic like you said - though that does have it's

affect on Rob. All the kids tower over him, he needs a stool to reach the child

size sinks in school - there are just a lot of things.

The cost of your Rob's growth hormone is unbelievable. I am glad that Eli Lilly

is working with you. I saw your other post on the paperwork issue - I hope all

of that is now resolved. $48,000 a year seems criminal though. With our

military TRICARE, the hormone would be covered if Rob is started on it - I think

- which is probably another reason to wait and see - the cost has to play into

it. They have changed me from Prilosec because of the cost and I am taking

another, less effective med now.

I think that is everything on Rob. My original follow up was cancelled because

of snow - but I did see the Doc last week - and my blood count has improved -

though it's still low. My hgb is up to 11 - which is pretty good from

8.something - but my iron is still quite low - I don't have the results handy -

but overall improvement - just not as much as she would like to see, and she

still wants to identify the underlying cause. They ruled out my cycle, since it

is relatively light except for the first day and unchanged since I had Rob. So

off to the GI clinic I am going for a work up to make sure there is nothing

undetected going on there. (this is not going to be pleasant) - she also did an

chest xray - because my laryngitis did not clear up until the end of Jan - and I

still have frequent hoarseness. She wanted to make sure that I didn't have a

goiter (apparrently they sometimes grow into the chest and not always visible on

the neck) pressing on the nerve that affects the larynx. That was all clear

(though the xray report did comment on " mild degenerative changes in the

thoracic spine " this aging stuff is for the birds...). Anyway, we were just

going to wait and see, but when she called me about the GI referral, she noted

that my voice was hoarse on the phone - so off to ENT to check that out. I

think that is just a result of my allergies - it's always worse in the winter.

Overall, I am feeling much better - and the outside temp is even decent today,

so spring is on the way! Thanks for asking! I keep trying to read and keep up

on everybody - but my home computer is still down and work has been really busy

- I often eat lunch at my desk to try to stay on top of things. I hope that you

guys are staying well and keeping warm!

Val

Rob's Mom (6,systemic)

In a message dated 2/18/2004 4:54:18 PM Eastern Standard Time,

snooksmama@... writes:

>

>

> Val:

> I'm glad that you updated on Robbie...

> At least, even if they wait to see him again for another 6 months, he

> does have plenty of time for growth. But I have since learned that growth

> issues are not just cosmetic. Poor growth can affect the bone density and

> internal organs, so its not just 'for looks' or to fit in. Although for

> my Rob, the growth was important to him. Just being able to reach the

> upper kitchen cabinets has been a huge victory for him!

> Did Robbie have a stim test yet? If not, that will likely be the next

> step. We had a bone age, waited 6 months, little growth had occurred, and

> then Rob had the growth hormone stim test.

> Growth hormone is quite expensive, but most of the drug manufacturers

> will donate the medication for a fraction of the cost. For example, Rob's

> dose costs $48,000 a year , and Eli Lilly is charging us $1500.

> How is your blood count doing these days?

> and Rob 14 Spondy

>

> On Wed, 18 Feb 2004 12:28:00 -0500 carneyval@... writes:

> > Hi Soili,

> > I agree with , but I would approach the rheumy again, and try

> > to avoid waiting the six months. Rob's rheumy kept waiting, and his

> > pediatrician finally took action - after the Nephrologist said - we

> > need to do something! (the old saying too many cooks is coming to

> > mind) - anyway - Rob was referred to endocrinology, the bone study

> > showed Rob's bone age to be inbetween 3 - 4 (He's 6) - and he hadn't

> > shown any substantial growth for a year. The first appt they

> > discussed everything, ordered some tests, and measured him on their

> > equipment. Then when we went back a month later to discuss all of

> > the results, they determined he had grown one half a centimeter, and

> > based on that decided to wait six months and evaluate him again -

> > even with saying that their original measurement may not have been

> > correct. It bothers me because he is halfway through first grade,

> > and is wearing Toddler sizes - and we are just waiting. Of course,

> > he has been on oral steriods (and some IV) since before diagnosis -

> > and has had some growth when the dose has gotten smaller in the

> > past. JRA itself can affect growth according to the literature I

> > have read - it's not just the meds. I found out that cyclosporine

> > can also affect the growth, which Rob has also been on for a long

> > time. Rob too is looking thin (again, since the dose has come back

> > down) and has dark circles - under his eyes and looks pale. Some

> > may be just due to the winter - though he does have some time

> > outside on warmer days - and he is keeping active and has tons of

> > energy - looking at him though, I keep waiting for the signs of a

> > flare - he has that look about him that I am trying not to

> > recognize. He did have some knee pain yesterday morning - so all

> > day at work I wondered how he would be when I picked him up - but he

> > was running around playing, no pain and ready for tuesday night

> > skating. Boy did I ramble off from what I intended. My whole point

> > really is that the endocrinologist may want to take time to observe

> > and watch, just like Rob's has - in spite of having a record of

> > almost no growth for a year in his records already - so why wait

> > six months before you even get Juho seen?

> > Best wishes!

> > Val

> > Rob's Mom (6,systemic)

> >

> > In a message dated 2/18/2004 11:27:17 AM Eastern Standard Time,

> > soilimar@... writes:

> >

> > >

> > >

> > >

> > > > I would urge you to take Juho to a pediatric

> > > > endocrinologist who can determine the source of Juho's growth

> > delay.

> > > > Keep us posted on Juho!

> > > > How are your other children doing?

> > > > and Rob 14 Spondy

> > >

> > > Hi ,

> > > thanks. I hope Juho will be referred to ped. endocrinologist,

> > that's

> > > what I asked for but the rheumy wanted to wait and see for 6 more

> >

> > > months.

> > > The others are doing ok, Juha's polyarthritis is in medicated

> > > remisssion.

> > > Thanks again,

> > > Soili

> > >

> > >

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi ,

Robbie is still doing well - he had basketball practice last night - but seemed

a little off - fell more than usual, got knocked off his feet easier in a rush

for the ball, that kind of thing. I think he may have been overtired (another

one of those words that sends little alarms going off in my head) but when we

got home he had a low grade fever - but better this morning. (I keep hitting the

snooze on that alarm...) He saw rheumatology a couple of weeks ago - and they

were pleased with how he is doing, though he didn't see the same Doctor - the

snow delayed us and he had military training - and the Doc that we did see was a

totally new face, as were many on the " team " - (one asked what dose of MTX we

were at, so I had to calmly point out that Rob isn't taking MTX) anyway - they

chose to wait on tapering any more, keeping Rob at 3 mg. The one Doc we talked

with, pointing out how at this level even the smallest drop can trigger a flare

(like he had to tell me) - anyway we see rheumy again in 2 or 3 months - I'll

have to check his chart. He hadn't had labs drawn yet - we got them done the

same day - and the sed rate and some of the other things have increased quite a

bit (though the sed rate was still under 40 - I don't have my copy here - still

nowhere near the >100 we have seen in the past) - so when the regular rheumy

called regarding the labs, I let him know that Robbie had cold symptoms so that

was probably what was going on. The rheumy that saw Rob said that his heart

rate was a little irregular - not the murmur they have heard in the past - just

a slight irregularity. They said there was no need to change anything - but to

continue watching him and have him see his regular ped at the end of the month.

Since then, Rob developed an ear infection and conjunctivitis - so last Friday

we were back at the Doctor, and starting meds. So he goes for a recheck of the

ear when he sees the ped at the end of the month. They didn't mention his heart

rate when we were in for his ear - and it didn't occur to me to ask for some

reason.

Regarding endo - we are about half way through the six month " watch and see " bit

now. He, of course already had the bone age study, and the bone density

revealed osteopenia, so we upped his Calcium considerably from what he was

taking before. They did some lab work when we saw them, so he may have had the

stim test - I will have to go back and take another look. Robbie does have

plenty of time for growth - so that's why I am not going completely nuts over

this.... but it isn't just cosmetic like you said - though that does have it's

affect on Rob. All the kids tower over him, he needs a stool to reach the child

size sinks in school - there are just a lot of things.

The cost of your Rob's growth hormone is unbelievable. I am glad that Eli Lilly

is working with you. I saw your other post on the paperwork issue - I hope all

of that is now resolved. $48,000 a year seems criminal though. With our

military TRICARE, the hormone would be covered if Rob is started on it - I think

- which is probably another reason to wait and see - the cost has to play into

it. They have changed me from Prilosec because of the cost and I am taking

another, less effective med now.

I think that is everything on Rob. My original follow up was cancelled because

of snow - but I did see the Doc last week - and my blood count has improved -

though it's still low. My hgb is up to 11 - which is pretty good from

8.something - but my iron is still quite low - I don't have the results handy -

but overall improvement - just not as much as she would like to see, and she

still wants to identify the underlying cause. They ruled out my cycle, since it

is relatively light except for the first day and unchanged since I had Rob. So

off to the GI clinic I am going for a work up to make sure there is nothing

undetected going on there. (this is not going to be pleasant) - she also did an

chest xray - because my laryngitis did not clear up until the end of Jan - and I

still have frequent hoarseness. She wanted to make sure that I didn't have a

goiter (apparrently they sometimes grow into the chest and not always visible on

the neck) pressing on the nerve that affects the larynx. That was all clear

(though the xray report did comment on " mild degenerative changes in the

thoracic spine " this aging stuff is for the birds...). Anyway, we were just

going to wait and see, but when she called me about the GI referral, she noted

that my voice was hoarse on the phone - so off to ENT to check that out. I

think that is just a result of my allergies - it's always worse in the winter.

Overall, I am feeling much better - and the outside temp is even decent today,

so spring is on the way! Thanks for asking! I keep trying to read and keep up

on everybody - but my home computer is still down and work has been really busy

- I often eat lunch at my desk to try to stay on top of things. I hope that you

guys are staying well and keeping warm!

Val

Rob's Mom (6,systemic)

In a message dated 2/18/2004 4:54:18 PM Eastern Standard Time,

snooksmama@... writes:

>

>

> Val:

> I'm glad that you updated on Robbie...

> At least, even if they wait to see him again for another 6 months, he

> does have plenty of time for growth. But I have since learned that growth

> issues are not just cosmetic. Poor growth can affect the bone density and

> internal organs, so its not just 'for looks' or to fit in. Although for

> my Rob, the growth was important to him. Just being able to reach the

> upper kitchen cabinets has been a huge victory for him!

> Did Robbie have a stim test yet? If not, that will likely be the next

> step. We had a bone age, waited 6 months, little growth had occurred, and

> then Rob had the growth hormone stim test.

> Growth hormone is quite expensive, but most of the drug manufacturers

> will donate the medication for a fraction of the cost. For example, Rob's

> dose costs $48,000 a year , and Eli Lilly is charging us $1500.

> How is your blood count doing these days?

> and Rob 14 Spondy

>

> On Wed, 18 Feb 2004 12:28:00 -0500 carneyval@... writes:

> > Hi Soili,

> > I agree with , but I would approach the rheumy again, and try

> > to avoid waiting the six months. Rob's rheumy kept waiting, and his

> > pediatrician finally took action - after the Nephrologist said - we

> > need to do something! (the old saying too many cooks is coming to

> > mind) - anyway - Rob was referred to endocrinology, the bone study

> > showed Rob's bone age to be inbetween 3 - 4 (He's 6) - and he hadn't

> > shown any substantial growth for a year. The first appt they

> > discussed everything, ordered some tests, and measured him on their

> > equipment. Then when we went back a month later to discuss all of

> > the results, they determined he had grown one half a centimeter, and

> > based on that decided to wait six months and evaluate him again -

> > even with saying that their original measurement may not have been

> > correct. It bothers me because he is halfway through first grade,

> > and is wearing Toddler sizes - and we are just waiting. Of course,

> > he has been on oral steriods (and some IV) since before diagnosis -

> > and has had some growth when the dose has gotten smaller in the

> > past. JRA itself can affect growth according to the literature I

> > have read - it's not just the meds. I found out that cyclosporine

> > can also affect the growth, which Rob has also been on for a long

> > time. Rob too is looking thin (again, since the dose has come back

> > down) and has dark circles - under his eyes and looks pale. Some

> > may be just due to the winter - though he does have some time

> > outside on warmer days - and he is keeping active and has tons of

> > energy - looking at him though, I keep waiting for the signs of a

> > flare - he has that look about him that I am trying not to

> > recognize. He did have some knee pain yesterday morning - so all

> > day at work I wondered how he would be when I picked him up - but he

> > was running around playing, no pain and ready for tuesday night

> > skating. Boy did I ramble off from what I intended. My whole point

> > really is that the endocrinologist may want to take time to observe

> > and watch, just like Rob's has - in spite of having a record of

> > almost no growth for a year in his records already - so why wait

> > six months before you even get Juho seen?

> > Best wishes!

> > Val

> > Rob's Mom (6,systemic)

> >

> > In a message dated 2/18/2004 11:27:17 AM Eastern Standard Time,

> > soilimar@... writes:

> >

> > >

> > >

> > >

> > > > I would urge you to take Juho to a pediatric

> > > > endocrinologist who can determine the source of Juho's growth

> > delay.

> > > > Keep us posted on Juho!

> > > > How are your other children doing?

> > > > and Rob 14 Spondy

> > >

> > > Hi ,

> > > thanks. I hope Juho will be referred to ped. endocrinologist,

> > that's

> > > what I asked for but the rheumy wanted to wait and see for 6 more

> >

> > > months.

> > > The others are doing ok, Juha's polyarthritis is in medicated

> > > remisssion.

> > > Thanks again,

> > > Soili

> > >

> > >

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

Val:

Thank you for your post. It is always good to get updated on yourself and

Robbie. Hope he was fever free today. Yep, I hate to get a different doc.

The last 2 times at nephrology Rob has seen a different doc. When we go

back in March we will see the same one we saw in December, God willing!!

You know, my Rob has or rather had osteopenia, and it resolved with the

growth hormone. He was being treated with Actonel prior to going on the

growth hormone.

The growth hormone stim test has to be done in a controlled setting. They

start an IV line, administer a medication, and then draw blood at 1/2

hour intervals. The med ( I can't remember the name at present, but it

was a BP med) made Rob really sleepy, but the experience wasn't too bad.

> but it isn't just cosmetic like you said - though that does have

> it's affect on Rob. All the kids tower over him, he needs a stool

> to reach the child size sinks in school - there are just a lot of

> things.

Right you are, Val...to Rob, the growth issue was very important. It

still is, though he has caught up a lot, he is still one of the smallest

freshman in his class of 150. (I think there may be one child smaller

than him).

As far as the growth hormone cost, we won't have an answer from our new

insurer for a while, but in the meantime, Lilly is going to continue to

provide the GH. We feel very blessed.

> They have changed me from Prilosec because of the cost and I am

> taking another, less effective med now.

That happened to my husband too, with his med for GERD

> I think that is everything on Rob. My original follow up was

> cancelled because of snow - but I did see the Doc last week - and my

> blood count has improved - though it's still low. My hgb is up to

> 11 - which is pretty good from 8.something - but my iron is still

> quite low - I don't have the results handy - but overall improvement

> - just not as much as she would like to see, and she still wants to

> identify the underlying cause. They ruled out my cycle, since it is

> relatively light except for the first day and unchanged since I had

> Rob. So off to the GI clinic I am going for a work up to make sure

> there is nothing undetected going on there. (this is not going to

> be pleasant) - she also did an chest xray - because my laryngitis

> did not clear up until the end of Jan - and I still have frequent

> hoarseness. She wanted to make sure that I didn't have a goiter

> (apparrently they sometimes grow into the chest and not always

> visible on the neck) pressing on the nerve that affects the larynx.

> That was all clear (though the xray report did comment on " mild

> degenerative changes in the thoracic spine " this aging stuff is for

> the birds...). Anyway, we were just going to wait and see, but when

> she called me about the GI referral, she noted that my voice was

> hoarse on the phone - so off to ENT to check that out. I think that

> is just a result of my allergies - it's always worse in the winter.

I am glad that you are doing better. Wish they could uncover the cause of

the low blood count, though, without the uncomfortable procedures. Be

sure and keep us updated on what is going on, ok? I hope that Robbie's

sed rate declines and that he will continue to do well, and maybe get off

the pred. He has had so much to deal with in his young life. Oh, by the

way, I may be in Washington the first weekend in June for my cousin's

daughter's wedding. If we do, we will have to be sure and meet up! Rob

can meet Rob!

Take care,

and Rob 14 Spondy

> Overall, I am feeling much better - and the outside temp is even

> decent today, so spring is on the way! Thanks for asking! I keep

> trying to read and keep up on everybody - but my home computer is

> still down and work has been really busy - I often eat lunch at my

> desk to try to stay on top of things. I hope that you guys are

> staying well and keeping warm!

> Val

> Rob's Mom (6,systemic)

>

> In a message dated 2/18/2004 4:54:18 PM Eastern Standard Time,

> snooksmama@... writes:

>

> >

> >

> > Val:

> > I'm glad that you updated on Robbie...

> > At least, even if they wait to see him again for another 6 months,

> he

> > does have plenty of time for growth. But I have since learned that

> growth

> > issues are not just cosmetic. Poor growth can affect the bone

> density and

> > internal organs, so its not just 'for looks' or to fit in.

> Although for

> > my Rob, the growth was important to him. Just being able to reach

> the

> > upper kitchen cabinets has been a huge victory for him!

> > Did Robbie have a stim test yet? If not, that will likely be the

> next

> > step. We had a bone age, waited 6 months, little growth had

> occurred, and

> > then Rob had the growth hormone stim test.

> > Growth hormone is quite expensive, but most of the drug

> manufacturers

> > will donate the medication for a fraction of the cost. For

> example, Rob's

> > dose costs $48,000 a year , and Eli Lilly is charging us $1500.

> > How is your blood count doing these days?

> > and Rob 14 Spondy

> >

> > On Wed, 18 Feb 2004 12:28:00 -0500 carneyval@... writes:

> > > Hi Soili,

> > > I agree with , but I would approach the rheumy again, and

> try

> > > to avoid waiting the six months. Rob's rheumy kept waiting, and

> his

> > > pediatrician finally took action - after the Nephrologist said -

> we

> > > need to do something! (the old saying too many cooks is coming

> to

> > > mind) - anyway - Rob was referred to endocrinology, the bone

> study

> > > showed Rob's bone age to be inbetween 3 - 4 (He's 6) - and he

> hadn't

> > > shown any substantial growth for a year. The first appt they

> > > discussed everything, ordered some tests, and measured him on

> their

> > > equipment. Then when we went back a month later to discuss all

> of

> > > the results, they determined he had grown one half a centimeter,

> and

> > > based on that decided to wait six months and evaluate him again

> -

> > > even with saying that their original measurement may not have

> been

> > > correct. It bothers me because he is halfway through first

> grade,

> > > and is wearing Toddler sizes - and we are just waiting. Of

> course,

> > > he has been on oral steriods (and some IV) since before

> diagnosis -

> > > and has had some growth when the dose has gotten smaller in the

>

> > > past. JRA itself can affect growth according to the literature

> I

> > > have read - it's not just the meds. I found out that

> cyclosporine

> > > can also affect the growth, which Rob has also been on for a

> long

> > > time. Rob too is looking thin (again, since the dose has come

> back

> > > down) and has dark circles - under his eyes and looks pale.

> Some

> > > may be just due to the winter - though he does have some time

> > > outside on warmer days - and he is keeping active and has tons

> of

> > > energy - looking at him though, I keep waiting for the signs of

> a

> > > flare - he has that look about him that I am trying not to

> > > recognize. He did have some knee pain yesterday morning - so

> all

> > > day at work I wondered how he would be when I picked him up -

> but he

> > > was running around playing, no pain and ready for tuesday night

>

> > > skating. Boy did I ramble off from what I intended. My whole

> point

> > > really is that the endocrinologist may want to take time to

> observe

> > > and watch, just like Rob's has - in spite of having a record of

>

> > > almost no growth for a year in his records already - so why

> wait

> > > six months before you even get Juho seen?

> > > Best wishes!

> > > Val

> > > Rob's Mom (6,systemic)

> > >

> > > In a message dated 2/18/2004 11:27:17 AM Eastern Standard Time,

>

> > > soilimar@... writes:

> > >

> > > >

> > > >

> > > >

> > > > > I would urge you to take Juho to a pediatric

> > > > > endocrinologist who can determine the source of Juho's

> growth

> > > delay.

> > > > > Keep us posted on Juho!

> > > > > How are your other children doing?

> > > > > and Rob 14 Spondy

> > > >

> > > > Hi ,

> > > > thanks. I hope Juho will be referred to ped. endocrinologist,

>

> > > that's

> > > > what I asked for but the rheumy wanted to wait and see for 6

> more

> > >

> > > > months.

> > > > The others are doing ok, Juha's polyarthritis is in medicated

>

> > > > remisssion.

> > > > Thanks again,

> > > > Soili

> > > >

> > > >

> > > > >

> > > >

> > > >

> > > >

> > > >