Re: Update on Robbie - reply to Becki

[Guest guest]

Hi Becki,

Yes, that Arthur guy is a sneaky one. Robbie isn't taking Naproxen, though the

pediatrician seemed to think that he would be taking it when we were discussing

his discharge meds -and I told him absolutely not! The rheumy agreed with me,

so it is not an issue. He still has tummy pain, I just called his daycare, and

she put him on the phone, and he got all teary, telling me his tummy hurts

really bad, so here I am at work thinking I need to not be here. Of course,

part of the teary part is he is there, I am here - she said that he complained

of his tummy pain earlier, but that the " real bad " part and the tears didn't

start til I was on the phone. So, how much is him wanting me to come get him,

and how much is real? Also, could he be controlling his reaction to the pain

with others, and letting his " guard " down with me? Who knows? this is so hard.

I certainly didn't expect this flare out of nowhere, but I was getting nervous

when the runny nose and cough went on and on.

I typed a response to a post from Lynn earlier, and went back and deleted 98% of

it and redid it - getting rid of mostly tirade about Robbie's pain, and his

meds, and the weight gain, etc - so I am trying not to go down that road again.

The only real change is that he fell on the stairs 3 times yesterday. He

wasn't running, or carrying anything - and I didn't see any of the falls - just

heard him - so I am having a hard time figuring out what is going on. Is he

getting clumsy because of the weight, or is his meds doing something to him?

Aiyiyi.

I have to tell you about a dream I had the other night. I dreamed that someone

was after our kids. This guy was stalking us, and we (you and I) had Robbie,

and a little girl in a " safe house " . You were with them and I was driving

somewhere to help find the guy, because I had seen him and could identify him

(the warrior woman comes out - ha!) - anyway I passed him in a car on the

beltway - and I exited to take a back way to the base (where the safe house was)

- and I went in an office in a building near the safe house and my ex was there

(really weird) and then the guy walked in the building - I locked the door and

was trying to call the safe house and the person who answered couldn't tell me

if you and the kids were in the house, I told the person on the phone to

immediately lock the doors after they were sure you were still there. I locked

the entrance to the building I was calling base security, and my ex kept saying

" why are you doing that, what's going on " I told him to go in the hall and make

sure that guy didn't get anywhere - and I kept saying " That's the guy, that's

the guy. " Then security was there and everything was alright. Then, I woke up.

I woke up, went and checked on Robbie, and didn't know whether to laugh or cry.

I went downstairs and was sitting there thinking " boy, have you been stressed

out " then I started laughing - because I figured out that the guy must have been

that Arthur kid!

Well, gotta finish up a couple of things, then I can leave and go get my baby.

Take care & thanks for everything!

Val

Rob's Mom (5,systemic)

In a message dated 12/28/2002 10:44:32 AM Eastern Standard Time,

Arthurnator@... writes:

> Hi Val,

> Glad to hear from you again.So happy Robbie is out of the hospital.Sorry about

his tummy troubles continuing.I assume they took him off the Naproxen.I know it

must be very frustraiting that Robbie is back on his original doses of

Cyclosporine and Lisinopril.Hopefully they will take control quickly and he will

be feeling better.Im still having a hard time comming to terms that this flare

just came out of nowhere.I keep telling myself there is no way can go from

being perfect to a full blown flare.It looks like Arthur is much more sneaky

then then I thought.You guys are in my thoughts and prayers constantly.Hang in

there Val!!!

> Love and hugs

> Becki and 4systemic

>

[Guest guest]

Hi Val,

what an awful nightmare,it must have been very vivid for you to remember it in such great detail.Yep! it definatelly sounds to me that the mean Arthur kid manifested himself as a stalker.You are definately stressed,but who could blame you.

I wonder what has Robbies tummy still hurting?The steroids and higher doses of Cyclosporine and Lisinopril didn't bother him before did they?Mayby your little guy is stressed out too.

How are Robbies hips,knees and ankles?When s ankle would get so bad everytime he tried to go up or down the 2 steps to our sunken livingroom his ankle couldn't bare the weight and he would come crashing down.I guess the excess weight could make things awkward,has he really gained that much weight already?s never had IV pulse steroids,so I don't know what that can do,as far as the cushing syndrome.s head,male rheumy was always trying to push the steroids down to fast and he would flare, be put back on high doses and another weight gain.The male rheumy has been very gentle the last few months but he has lost his mind again.He wants to go from 3mg every other day down to 2mg every other for 1 month then 1mg every other day.I have already changed my calendar and am going to follow Dr.Georginas advice.I will drop 1/2mg every 2 weeks like we had been doing and still be at the same place at the end of the month.Alot less stress on his body.I think his adrenal glands will be able to cope with the shock better.

Keep in touch on how Robbies doing!!

Loving hugs

Becki and 4systemic

[Guest guest]

Hi Christy,

there is a part of me that believes that everything will be ok.When went from 3mg one day and 1/2 mg the next to just 3mg every other day he had 1 really bad morning.It only lasted about 20 minuites but it reminded me to much of the bad place.It wasn't really arthur just steroid withdrawl.It never returned but they did raise his Enbrel a little.He has no symptoma at all. I just figure 1/2mg every 2 weeks is the same as 1mg every month.I believe the Enbrel is taking over what only the pred could do but his adrenal gland no longer functions properly so by tapering things slow he can start producing cortisol on his own.They told me if they went to fast he could run fevers have joint and muscle pain and fatigue.All the things that look like a flare but it's not,its to low of cortisol levels.I have until the 12th to figure out what I am going to do and talk to his rheumy about it.Alot will depend on how his labs look Monday.

Thanks for your input!It means alot.

Hugs

becki and 4systemic

[Guest guest]

Becki,

I know what you mean about the cortisol levels. It was a big concern with us also. Thankfully it worked out fine. We had asked Dr. Jung earlier about MAS and prednisone drops, and he said that he knew what to look for, and if the beginning signs were present, he would up the pred again. Quite an enigma.

Christy (Abbie, 13 systemic)

[Guest guest]

Hi Becki - yes - it was one of the most vivid dreams I have ever had - at least

for a long time. Whew!

Yes, Robbie has gained a lot of weight already, seeming overnight. He is 38.5 -

39 inches tall (depending on who measures him), He weighed 34 lbs before this

flare, gained a pound after they raised the steriods to 10mg qd. On 19 Nov they

raised the steriods to 30 mg (15mg bid) - he weighed 35lbs that visit, and at

his visit two weeks later had gained 3 lbs. After his vomitting episodes and no

food for a couple of days in Dec, he was down to 35 lbs while in the hosp - but

gained 2 back before discharge, so on Dec 18 he was 37 lbs. At the doctor's

tuesday he weighed 41 lbs,(up 4 lbs in two weeks, up six pounds from pre-flare

weight) which is really heavy for his under 39 inches tall, small framed body.

(I, however, have lost 12 lbs - the folks at work keep commenting on how I

shouldn't be walking in after the holidays looking thinner - I had to remind

them that I wasn't around for all of the holiday food fests - and missed all the

goodies that our patients bring this time of year, and I was sick in- between

Rob's two hospitalizations, and missed a lot of meals while Rob was in the hosp.

Of course, after I realized I had lost the 8 lbs, I made a concious effort to

not gain it back, and dropped 4 more. I still have a long way to go to get back

to my Navy weight (ha!) but at least I can wear last winter's clothes again.

) Robbie saw the Rheumy tuesday - this time again a different one intially than

before. This guy remembered Robbie from when he was first seen and hospitalized

when he was first diagnosed - then he transferred to Europe for awile and is

just getting back. Then his regular Doc came in with him after the " team " met.

The new plan is to start Robbie on Indocin, to facilitate a taper, after

checking the labs. I called today, because the Indocin wasn't in the system at

the pharmacy, so I thought they were intending to check his labs first. They

had talked about raising the Cyclosporine again - but after checking the

cyclosporine level that was drawn before he was discharged from the hospital,

they decided to leave that the same. Anyway, I am not being very coherent in my

thoughts. I assumed they were waiting for lab results, and called them today,

since I didn't hear anything and his regular doc thought the other doc had

ordered the Indocin, since he did the clinic visit and ordered the labs. (This

team concept is working so well.)So, I was supposed to have started the Indocin

already. So, it is being ordered as we " speak " (they are discussing the dose)

and they plan to begin tapering the prelone by moving all of his 30 mg to the

am!!!! Yikes! Initially when I discussed not wanting an evening dose when we

went up to 30mg the " team " insisted that I break it down into two doses, that

is why he gets a late afternoon dose, to give him that second dose early enough

before bedtime that we aren't back in our 3 hours of sleep mode. So, I am

thinking after the phone call with the doc, that when he gets with the " team "

that taper plan may change. We'll see. During his exam, he had active

involvement in his right knee and his left shoulder. The knee pain, which I was

aware of could have had something to do with the falls - but he hasn't had

anymore of those. I knew his shoulder sometimes hurt - but I didn't realize how

bad, until they were evaluating his range of motion, that was the biggest

reaction to pain he has had during exam in the doctor's office ever. His hands

still bother him sometimes too. Since he has had headaches on occasion since

the last discharge, and had those falls, they are sending him back for eval at

the eye clinic - he has an appt on Monday. (We weren't due again until the

summer.) And now, the cyclosporine level they drew on tuesday was lower than

the level (significantly)when he was in the hospital - and it was drawn after he

had his dose ( a few hours after - but it is supposed to be drawn right before

the next scheduled dose) - so they may still raise his cyclosporine - after

checking his level before the dose on Saturday morning. That has really got me

going - because they weren't monitoring the cyclosporine very often, because he

was on such a small dose - that had me thinking that the reason for monitoring

it was to prevent the level from being too toxic if getting a high dose - but

what I should have realized is that if the level in the bloodstream isn't high

enough - then the effect is questionable - so he could have a higher dose, to

prevent a flare while we taper - which means that if it had been monitored close

(like ever in the last 12 months!) we may have prevented this last flare. Now I

am so mad, and getting myself worked up - because it looks like we have been

giving him a totally ineffective dose, at least with the lower steriod dose, so

no wonder he flared when the steriods got low. If we have to give them this

stuff that has potential other problems can't we at least be effective when we

do it? I am so mad at myself for not researching this more before. Of course,

one lab result is what has got me going - so that could be a fluke, so i guess I

will wait to beat myself up until after the saturday results. I am tired,

tired, tired. The school called me this morning, because Robbie had a headache,

and was in the nurse's office for a little while, but was able to go back to

class after he layed down for awhile. I asked if they checked his blood

pressure,and she said, " I don't know if I have a child's cuff here " I wanted to

say " You are in an elementary school, and you don't know if you have a child's

cuff! Let me go get you mine! " But, I told them that if his headache was

severe, I would want to know what his bp was, so they could call me and I would

come to get him so I could check it. His bp has been fine during all the recent

headaches, even the severe ones, so I guess he is ok. I called his

" afer-school " care lady, and told her to call me if he still complains of a

headache, and she hasn't called, so I guess all is relatively speaking ok. Now

I have decided to call to check before getting on the road - because I have got

myself wondering.

And, if my week hasn't been interesting enough - my landlady called last night

and the house has sold, and they want to close in three weeks (But I am payed up

through the end of the month) - that's actually only about 3 days after the 3

week period) so the fun begins now - I am going to be scrambling to find a place

- and none of the ads have been looking very promising. Wish me luck and thanks

for being there - my long ramble is coming to a close. Take care - I haven't

had time to read the recent posts - I hope everyone is doing well!

Love,

Val

Rob's Mom (5,systemic)

[Guest guest]

Hi Val,

You rant and rave all you want,you have every reason to be mad.My PDR says cyclosporine can be eratic in the system so your doctor will check your levels often to make sure you are not getting to much or to less of a dose.So you are most like right in your thinking.Rob wasn't absorbing enough of the cyclosporine to control his symptoms.Us moms have to go through a big learning process but the doctors should know this.You used to really like the team aproach,but I have a feeling your post was being sarcastic and you are not real thrilled about it now.I hope they start working better at being a team and get things straight with one another.I also hope they get off their butts and do something to help Robbie.

Welcome to the "sick child diet"as Ellie calls it.For every pound gained I lost.I would gladly swap with him though.If they switch everything to the am that might help lessen side effects,so I have read.As you know though,it took me forever to get off a pm dose once they split his due to am fevers.I just couldn't handle the crying in pain at night.I found if you give it around 3:30 it would kick in before the bad pain hit.It seems so long ago that had such awful pain I had just about forgotten it until now.

I will be praying that you find another place to live within 3 weeks.That sure isn't much time to find a place,pack up and get out,especially with Robbie still flaring.Hopefully you will find a place soon and with any luck just 1 story and a pool for Rob to swim in duiring the summer.Good luck!!! I hate moving.

Love and Hugs

Becki and 4systemic

[Guest guest]

Hi Becki!

Thanks, I'll try to keep the tears at bay - but I hate thinking about anyone

having even a mild setback (which is of course, all this is - I won't have it

any other way!!) You guys are in my thoughts so much, especially over the last

few days. Robbie says to tell hello! He wants to know when we will get

together again! I remember you recently in an email to (may have been in

Rustyroom) saying something about the Thunder over ?? I am drawing a blank -

anyway, you said you just needed to get me and Robbie to go next time - and I

was going to chime in - but didn't have the time - and then AOL sent the

messages away before I remembered to go back - but I was going to say " Have car,

will travel! " I miss you guys!

I keep thinking that the GI thing must be a polyp - or something simple enough

to deal with. The idea of a polyp bothers me because once you have them, it is

kind of a given that you get more, so routine checks are in order - though one

area where I was reading made polyps in children less likely to be the

reoccuring kind - which made me hopeful.

Well, it's getting late - I am up to over 250 posts again (And I was under 50

just last week!!) - but I'd better get some sleep. I am so glad that tomorrow

is Friday! (Robbie is too, because of baseball practice!).

Love ya!

Val

Rob's Mom (6,systemic)

[Guest guest]

Hi Val,

I hope the consult goes well and Robbie can be examined,diagnosed and treated

quickly and you get that call from the rheumy today.

Robbie is just so amazing.He doesn't let anything stop him and no matter what

he is still up for the game. wants to play soccer so bad and wouldn't

you know sighn ups were duiring AJAO.

and I were talking about Thunder over Louisville.It's the kick off to

the Kentucky Derby.It's a very long day followed by the largest,most

spectacular fireworks show in the United States.They have a realy nice air show

too that

the kids like.Something you just don't forget easily.

Lots of hugs

Becki and 6 systemic

PS) says hi to Robbie too

[Guest guest]

Hi Becki,

Thanks - I've never been so anxious for a Monday! He is doing pretty well,

though he does get pretty uncomfortable. He is so excited that he has baseball

practice today - they won their game on Sunday (23-16), but we did have to make

a dash from one field to around the next one to get to the porta-potty - but we

made it back in time for his time at bat. He is one determined little boy.

It's a shame that missed sign up for soccer - he has so much energy - it

would be great for him. Robbie kept talking about playing soccer instead of

baseball for this fall season, and they had a beginners soccer clinic sign up

(he kept saying " but, Mom.... I haven't tried soccer yet, I might like it like I

like basketball and baseball " ) for awhile he kept talking about doing both -

but I explained that with practice and games it would be too much and interfere

with school - (not to mention me trying to make it on the beltway to pick him up

in time for practice that many more days!) - finally I told him that he would

have to decide - (I explained that I was concerned about his bones, with the

bone loss that he may experience a break easy - and even though that could

happen during other sports or on the playground, that it seemed a bigger risk

with everyone trying to get to and kick the ball - in spite of the protective

gear. For awhile, I thought, " :hmm a bunch of beginners, 5 - 7, how bad could

it be " then I realized that the last thing I wanted was a bunch of 5 - 7 year

olds - who would mostly be bigger than Robbie trying to run at and kick a ball,

when they have NO EXPERIENCE - yikes! Anyway, I gave him two weeks to make up

his mind (luckily it was soon after the All Stars game) - and he decided to play

baseball, saying he might want to try soccer next year. So here we are.

Thunder over Louisville sounds wonderful! Well, I have rambled on here, so

better get moving -there are a couple of posts I want to try to respond to

before getting back to work! Have a great day - tell everyone hello from me and

Robbie!

Love,

Val

In a message dated 9/24/2004 8:57:51 AM Eastern Daylight Time,

Arthurnator@... writes:

>Hi Val,

>I hope the consult goes well and Robbie can be examined,diagnosed and treated

>quickly and you get that call from the rheumy today.

>Robbie is just so amazing.He doesn't let anything stop him and no matter what

>he is still up for the game. wants to play soccer so bad and wouldn't

>you know sighn ups were duiring AJAO.

> and I were talking about Thunder over Louisville.It's the kick off to

>the Kentucky Derby.It's a very long day followed by the largest,most

>spectacular fireworks show in the United States.They have a realy nice air show

too that

>the kids like.Something you just don't forget easily.

>Lots of hugs

>Becki and 6 systemic

>PS) says hi to Robbie too

>

>

>