Re: Reply to Colleen, was For Val - checking on Robbie

[Guest guest]

Hi Colleen,

Thank you so much for checking on us & I want to apologize for taking so long to

respond - it seems like everytime I was able to get online, I would never make

it down to the older posts to respond to those I'd saved to respond to. I am

going to have to come up with a better system. Robbie is doing ok - about the

same as before, though fewer pain complaints - but no difference than I would

have expected being on the high dose of steriods he's been on. He has been

having some mild tummy discomfort - frankly no more than had become the norm for

him with his other meds (but what do I know) so, it looks like we are switching

to injections next week. His labs finally leveled out (not quite normal,

but...) to where we began tapering the steriods - so we dropped a week ago today

from 42mg daily (21mg bid) to 30 mg, 21mg in the am and 9mg in the evening. I

am waiting for a phone back today to discuss this weeks taper amount, or

possible blood draw first. His poor little body is cushing-ed out. More

recently he has had pretty bad heel pain, I took him in to see the pediatrician

(his regular one was on vacation) and she thought it was probably from edema

settling there while on his feet, and sitting with the feet dangling at school -

he was also experiencing itching - but no rash, etc in the area, just swollen,

itchy, painful heels. The pedi said to have him elevate his feet as much as

possible, and gave us a lotion w/hydrocortisone for his feet. He is doing

better there, but we saw her on the last day of school before the holiday break

- so he hasn't been in the same situation to aggravate it. The night before we

went in, his heels hurt so bad he was in tears. He initially kept saying it was

his shoes - and after 3 different new pairs and increasing pain it was clear

there was more going on. It had gotten so bad, that his teacher had started

allowing him to leave his shoes off in class. He also had a strange mark appear

on the side of his leg - going at an angle from the area where his calf curves

in, towards his knee - it looks like a stretchmark, it appeared the morning we

saw the pedi - and she said it looked like a stretch mark - though it had more

redness to it than any I ever had. He still has the odd skin breakout on his

chest, though that remains unchanged and the patch behind his ear looks a little

better, though the pimply area across his forehead looks worse - and his

eyebrows are growing dangerously close. How I miss his beautiful baby skin -

but overall he is doing pretty well, though he has gained over ten pounds since

this flare began - an lot of weight on his short little body with no growth in

height! I am hanging in there, though work has been especially challenging

lately - but seems to be evening out now. I hope you and Caitlin (and everyone

else in your household!) had a wonderful holiday, and have a wonderful, happy

New Year. My heart ached when I read your post about Caitlin maybe not being a

good candidate for the MRA because of failiing the other treatments! I hope

that doesn't turn out to be the case, and that it is the miracle that we all

pray for! Thanks again for being there!

Love,

Val (Rob's Mom-7,systemic)

In a message dated 12/3/2004 10:54:52 PM Eastern Standard Time, " bookissmom "

<bookissmom@...> writes:

>

>

>Hi Val-

>

>When you have a chance.... I've been thinking about you both and

>wondering how Robbie is handling the MTX.  If I have the dates right,

>today is his second dose.  How's it going?  I know it's probably

>early to have any results, but I'm praying it will be soon and

>without side effects!

>

>Take care-

>Colleen

>

>

>

>

>

>

>

>

[Guest guest]

--Val,

It was good to read an update on Robbie, although I wish the news

was better. I hope hes able to lower his pred more next week, he

sure has been on high doses, poor guy. I know Nick legs got more

hairy, even on low doses, I cant even imagine what high doses would

do...

I understand about the feet, Nick is always complaining about shoes,

I thought it just just him, but i now wonder if it was not ankle

pain when i pushed them on... we now do velcro, which are easier,

but Nick loves to wear them on the wrong feet!! go figure, he says

they feel better that way???? Strange kid...

I wish you and Robbie, a MUCH better 2005 than 2004, heres to an end

to steriods, and more control of Robbies Systemic flares.

HUgs Helen and (7,systemic)

- In , carneyval@a... wrote:

> Hi Colleen,

> Thank you so much for checking on us & I want to apologize for

taking so long to respond - it seems like everytime I was able to

get online, I would never make it down to the older posts to respond

to those I'd saved to respond to. I am going to have to come up

with a better system. Robbie is doing ok - about the same as

before, though fewer pain complaints - but no difference than I

would have expected being on the high dose of steriods he's been

on. He has been having some mild tummy discomfort - frankly no more

than had become the norm for him with his other meds (but what do I

know) so, it looks like we are switching to injections next week.

His labs finally leveled out (not quite normal, but...) to where we

began tapering the steriods - so we dropped a week ago today from

42mg daily (21mg bid) to 30 mg, 21mg in the am and 9mg in the

evening. I am waiting for a phone back today to discuss this weeks

taper amount, or possible blood draw first. His poor little body is

cushing-ed out. More recently he has had pretty bad heel pain, I

took him in to see the pediatrician (his regular one was on

vacation) and she thought it was probably from edema settling there

while on his feet, and sitting with the feet dangling at school - he

was also experiencing itching - but no rash, etc in the area, just

swollen, itchy, painful heels. The pedi said to have him elevate

his feet as much as possible, and gave us a lotion w/hydrocortisone

for his feet. He is doing better there, but we saw her on the last

day of school before the holiday break - so he hasn't been in the

same situation to aggravate it. The night before we went in, his

heels hurt so bad he was in tears. He initially kept saying it was

his shoes - and after 3 different new pairs and increasing pain it

was clear there was more going on. It had gotten so bad, that his

teacher had started allowing him to leave his shoes off in class.

He also had a strange mark appear on the side of his leg - going at

an angle from the area where his calf curves in, towards his knee -

it looks like a stretchmark, it appeared the morning we saw the

pedi - and she said it looked like a stretch mark - though it had

more redness to it than any I ever had. He still has the odd skin

breakout on his chest, though that remains unchanged and the patch

behind his ear looks a little better, though the pimply area across

his forehead looks worse - and his eyebrows are growing dangerously

close. How I miss his beautiful baby skin - but overall he is doing

pretty well, though he has gained over ten pounds since this flare

began - an lot of weight on his short little body with no growth in

height! I am hanging in there, though work has been especially

challenging lately - but seems to be evening out now. I hope you

and Caitlin (and everyone else in your household!) had a wonderful

holiday, and have a wonderful, happy New Year. My heart ached when

I read your post about Caitlin maybe not being a good candidate for

the MRA because of failiing the other treatments! I hope that

doesn't turn out to be the case, and that it is the miracle that we

all pray for! Thanks again for being there!

> Love,

> Val (Rob's Mom-7,systemic)

>

> In a message dated 12/3/2004 10:54:52 PM Eastern Standard

Time, " bookissmom " <bookissmom@y...> writes:

>

> >

> >

> >Hi Val-

> >

> >When you have a chance.... I've been thinking about you both and

> >wondering how Robbie is handling the MTX.  If I have the dates

right,

> >today is his second dose.  How's it going?  I know it's probably

> >early to have any results, but I'm praying it will be soon and

> >without side effects!

> >

> >Take care-

> >Colleen

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Helen,

Thanks for the well wishes! We are muddling along. We have bought Robbie three

different pairs of tennis shoes in the last month or so, trying to improve his

heel pain (i probably already mentioned the shoes) anyway - he has one pair that

tie, he complained about those, I bought a velcro pair, he complained about

those - though those went on easier than any of the others - and a pull on pair

- which are very hard to put on - but he says his feet feel better in them

(though I think he just wants them because of spiderman being on them - though

he wanted a plain pair when we were looking that time) - anyway, maybe it's

because he doesn't have to do any more work once he actually has his feet in

them!

Last night he complained of ankle pain and knee pain - and his knee did look a

little swollen, though with the weight gain it is really hard to tell. No fever

or rash, just a little bump I think. He didn't want Motrin this morning, so I

guess he is feeling better. It's so hard to be at work sometimes, wondering if

he is really doing ok. There are some other things that are going on - but I

think I'll go into that in another post.

You are right about the hair - his little back, arms, legs - neck, face - hair

everywhere! The lady cutting his hair had to take a step back - she couldn't

believe how much she needed to shave from his neck, and sideburn area. I never

mention the hair on his back - he freaks enough over the hair on his legs -

wouldn't wear shorts in the summer and asked me how he could get rid of it!

Thanks again! I wish you and your family a wonderful New Year - and continuing

progress for Nick.

Val

Rob's Mom (7,systemic)

In a message dated 12/29/2004 6:29:08 PM Eastern Standard Time, " hburger64 "

<hburger64@...> writes:

>

>

>--Val,

>

>It was good to read an update on Robbie, although I wish the news

>was better. I hope hes able to lower his pred more next week, he

>sure has been on high doses, poor guy. I know Nick legs got more

>hairy, even on low doses, I cant even imagine what high doses would

>do...

>

>I understand about the feet, Nick is always complaining about shoes,

>I thought it just just him, but i now wonder if it was not ankle

>pain when i pushed them on... we now do velcro, which are easier,

>but Nick loves to wear them on the wrong feet!! go figure, he says

>they feel better that way???? Strange kid...

>

>I wish you and Robbie, a MUCH better 2005 than 2004, heres to an end

>to steriods, and more control of Robbies Systemic flares.

>

>HUgs Helen and (7,systemic)

>

>- In , carneyval@a... wrote:

>> Hi Colleen,

>> Thank you so much for checking on us & I want to apologize for

>taking so long to respond - it seems like everytime I was able to

>get online, I would never make it down to the older posts to respond

>to those I'd saved to respond to.  I am going to have to come up

>with a better system.  Robbie is doing ok - about the same as

>before, though fewer pain complaints - but no difference than I

>would have expected being on the high dose of steriods he's been

>on.  He has been having some mild tummy discomfort - frankly no more

>than had become the norm for him with his other meds (but what do I

>know) so, it looks like we are switching to injections next week.

>His labs finally leveled out (not quite normal, but...) to where we

>began tapering the steriods - so we dropped a week ago today from

>42mg daily (21mg bid) to 30 mg, 21mg in the am and 9mg in the

>evening.  I am waiting for a phone back today to discuss this weeks

>taper amount, or possible blood draw first.  His poor little body is

>cushing-ed out.  More recently he has had pretty bad heel pain, I

>took him in to see the pediatrician (his regular one was on

>vacation) and she thought it was probably from edema settling there

>while on his feet, and sitting with the feet dangling at school - he

>was also experiencing itching - but no rash, etc in the area, just

>swollen, itchy, painful heels.  The pedi said to have him elevate

>his feet as much as possible, and gave us a lotion w/hydrocortisone

>for his feet.  He is doing better there, but we saw her on the last

>day of school before the holiday break - so he hasn't been in the

>same situation to aggravate it.  The night before we went in, his

>heels hurt so bad he was in tears.  He initially kept saying it was

>his shoes - and after 3 different new pairs and increasing pain it

>was clear there was more going on.  It had gotten so bad, that his

>teacher had started allowing him to leave his shoes off in class.

>He also had a strange mark appear on the side of his leg - going at

>an angle from the area where his calf curves in, towards his knee -

>it looks like a stretchmark, it appeared the morning we saw the

>pedi - and she said it looked like a stretch mark - though it had

>more redness to it than any I ever had.  He still has the odd skin

>breakout on his chest, though that remains unchanged and the patch

>behind his ear looks a little better, though the pimply area across

>his forehead looks worse - and his eyebrows are growing dangerously

>close.  How I miss his beautiful baby skin - but overall he is doing

>pretty well, though he has gained over ten pounds since this flare

>began - an lot of weight on his short little body with no growth in

>height!  I am hanging in there, though work has been especially

>challenging lately - but seems to be evening out now.  I hope you

>and Caitlin (and everyone else in your household!) had a wonderful

>holiday, and have a wonderful, happy New Year.  My heart ached when

>I read your post about Caitlin maybe not being a good candidate for

>the MRA because of failiing the other treatments!  I hope that

>doesn't turn out to be the case, and that it is the miracle that we

>all pray for!  Thanks again for being there!

>> Love,

>> Val (Rob's Mom-7,systemic)

>>

>> In a message dated 12/3/2004 10:54:52 PM Eastern Standard

>Time, " bookissmom " <bookissmom@y...> writes:

>>

>> >

>> >

>> >Hi Val-

>> >

>> >When you have a chance.... I've been thinking about you both and

>> >wondering how Robbie is handling the MTX.  If I have the dates

>right,

>> >today is his second dose.  How's it going?  I know it's probably

>> >early to have any results, but I'm praying it will be soon and

>> >without side effects!

>> >

>> >Take care-

>> >Colleen

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >