Re: Update on Robbie

[Guest guest]

Hi Kim,

Thanks for your well wishes. I am sorry that Logan wasn't feeling well on

Christmas. I have also been reading you posts on Ethan's rash - and I hope that

the follow up on that goes well and that he doesn't have systemic onset! How

awful that would be! It does sound like it could be fifth's disease, from what

I know of it. Also, many illnesses cause rashes, as well as fever alone. High

fevers as well as viruses can cause muscle aches and arthritic type pain - which

all goes away with the virus. (I haven't often prayed a kid had a virus - but

here goes!) I hope he is feeling better soon.

Val

Rob's Mom (5,systemic)

In a message dated 12/28/2002 1:31:08 AM Eastern Standard Time,

smithkim@... writes:

>

>

> Val,

> Good to hear from you. I have been wondering how Robbie is. I sure hate

> to hear that he had so much pain on Christmas day. Logan had a pretty

> miserable Christmas also. He run a fever all day,,so we went to the Dr on

> Thursday,,and he has strep again. Not sure why he would have it

> again,since he is on his daily antibiotics,,but we will go back in 2

> weeks and see if he got rid of it.

> Anyway,,glad to hear that Robbie is out of the hospital,,and I hope he

> will start feeling alot better soon.

>

> Kim and Logan 5 poly

>

>

[Guest guest]

Hi Val,

Just wondering how Robbie is doing today. Today is my day for posting..lol. I just haven't been able to find the time. I have however been keeping up on the posts and have been keeping you and Rob in my thoughts and prayers. I'm so glad that he is out of the hospital. I hope he quickly gets right back to where he was before his flare and that he stays there!

xoxo, Ellie and Riley 5 poly

[Guest guest]

Hi Ellie,

I am just now catching up on my posts (or at least attempting to) and wanted

to respond to yours from jan 3. Robbie is hanging in there - he is really

something. This morning he is complaining of tummy pain and of right knee

pain - but otherwise seems to be doing pretty good. They started him on

Indocin - which has been making him dizzy - but it looks like his body is

adjusting to it - because he hasn't complained of that yet this morning.

(The literature had said that it may cause dizziness until the body is used

to the med) - If he has any dizziness with it today or with his evening dose,

I won't be giving it in the morning because I don't want him to have a

problem at school. Thank you so much for keeping us in your thoughts and

prayers - it means so much! I hope that Riley continues to do well on as

little medication as possible. I have been trying to keep up with what has

been going on - and I know how disapointed you must have felt when you needed

to give the Vioxx (I think that was the med) again. I thought that both Liz

and Becki were right on target with their replies - so can't add much myself

- just that my thoughts are prayers are with you guys too!

Val

Rob's Mom (5,systemic)

[Guest guest]

Glad to hear Robbie did not have to be hospitalized but I know you must be incredibly frustrated by the whole experience. This is such a scary disease. Wishing and praying for a quick recovery and a return to his fun loving self. Hope he is out hitting home runs soon.

ecarneyval@... wrote:

Hi all. We saw the rheumy today - the good news is they aren't admitting him - so not as bad as other flares - though I wonder what they would have done if I'd brought him in last night. But the liver and spleen don't seem to be inflamed - though he is having a lot of tummy pain, which is new today. Still high fevers at night and he cannot move at all during the night. Today he has been up very little - though has taken a few sliding steps twice (shuffle). I lucked out when we got to the hospital for his appt - I was carrying him to the elevator in the parking garage, and one of the hospital's wheelchairs was sitting right there. Anyway we have raised the cyclosporine from 55mg bid to 65 mg bid, and have raised the prednisolone to 18mg from 3mg. damn, damn, damn. pardon me - but I can't even pretend with %$%##. I am so sick of

this, but it is really the only way to fight the systemic symptoms and protect his liver and spleen. Any of the other meds that I know we are thinking about would probably not act fast enough to fight the high fevers - which his poor body can't take more of. We go back to the rheumy in 2 weeks, unless of course he doesn't improve with these changes - or gets worse. And we are continuing with the Motrin BID that the ped started - though I have been giving it or tylenol q4 hours since thursday for fever and pain. But the other meds should eliminate that need. So here we are again. Talk about the I'm ok syndrome - Rob has been unable to move - and grimaced and moaned every time I have touched him the last couple of days to help him reposition in bed or on the couch, or take him to the bathroom - but when the rheumy was examining him - everytime he asked him if it hurt he said no - even when making the face (which he attempted not to) - the rheumy kept saying

that he could tell it was hurting in spite of Rob's denial - said he was being stoic. Come to find out, he didn't want to be admitted and didn't want to have an IV. When the "team" came in, and convinced him that they really didn't think he would need an IV or be admitted this time - he was more open about where and how much it hurt - but still not to the extent he does with me. These kids - go through so much. I am to keep him home at least until Thursday - and call the rhuemy if he doesn't seem ready to go back then. Rob will miss his first baseball game on Wednesday (which will probably be rained out anyway) and the second game on saturday - not really sure yet when the rheumy will let him go back. Rob is very upset about this - but happy to be going home without an IV. Got blood drawn today - will be waiting for the results. Thanks everyone for being there - I will update when I can. ValRob's Mom

(6,systemic)__________________________________________________

[Guest guest]

Val -

I hear ya! Damn damn damn! That is such a big jump on the

Prednisone. Has it worked? I hope that Robbie feels better real

fast!

Alia and Caroline, age 2, poly/uveitis

> Hi all. We saw the rheumy today - the good news is they aren't

admitting him - so not as bad as other flares - though I wonder what

they would have done if I'd brought him in last night. But the

liver and spleen don't seem to be inflamed - though he is having a

lot of tummy pain, which is new today. Still high fevers at night

and he cannot move at all during the night. Today he has been up

very little - though has taken a few sliding steps twice (shuffle).

I lucked out when we got to the hospital for his appt - I was

carrying him to the elevator in the parking garage, and one of the

hospital's wheelchairs was sitting right there. Anyway we have

raised the cyclosporine from 55mg bid to 65 mg bid, and have raised

the prednisolone to 18mg from 3mg. damn, damn, damn. pardon me -

but I can't even pretend with %$%##. I am so sick of this, but it

is really the only way to fight the systemic symptoms and protect

his liver and spleen. Any of the other meds that I know we are

thinking about would probably not act fast enough to fight the high

fevers - which his poor body can't take more of. We go back to the

rheumy in 2 weeks, unless of course he doesn't improve with these

changes - or gets worse. And we are continuing with the Motrin BID

that the ped started - though I have been giving it or tylenol q4

hours since thursday for fever and pain. But the other meds should

eliminate that need. So here we are again. Talk about the I'm ok

syndrome - Rob has been unable to move - and grimaced and moaned

every time I have touched him the last couple of days to help him

reposition in bed or on the couch, or take him to the bathroom - but

when the rheumy was examining him - everytime he asked him if it

hurt he said no - even when making the face (which he attempted not

to) - the rheumy kept saying that he could tell it was hurting in

spite of Rob's denial - said he was being stoic. Come to find out,

he didn't want to be admitted and didn't want to have an IV. When

the " team " came in, and convinced him that they really didn't think

he would need an IV or be admitted this time - he was more open

about where and how much it hurt - but still not to the extent he

does with me. These kids - go through so much. I am to keep him

home at least until Thursday - and call the rhuemy if he doesn't

seem ready to go back then. Rob will miss his first baseball game

on Wednesday (which will probably be rained out anyway) and the

second game on saturday - not really sure yet when the rheumy will

let him go back. Rob is very upset about this - but happy to be

going home without an IV. Got blood drawn today - will be waiting

for the results. Thanks everyone for being there - I will update

when I can.

> Val

> Rob's Mom (6,systemic)