Re: Has anybody heard from Val about Robbie?

[Guest guest]

Hi everyone - I want to thank everyone for their well wishes. There is no

denying that we are in a full flare. He has gotten progressively worse

everyday. No rash - but Rob has often been even weeks into a flare before we

see a rash. He started with the fever Thursday night - and has had little

relief since then - the fever comes down with the Motrin, but shoots right back

up when it wears off. He has had maybe 3 good hours each day where he is

actually up and walking (JRA shuffle) - Last night we almost made a trip to the

ER - but his 105 plus temp finally broke and his heart rate slowed down - the

only reason I didn't take him was that he wanted to be home Easter morning. He

got to do a small egg hunt before he tired out today. Since the Motrin is

helping I will keep a close eye until tomorrow - when his rhuemy gets back from

leave - I did talk to his office - Friday - but that was before his temp was

getting as high as it has been since. He is having pain in his arms, legs,

back, shoulders and occasionally has a sore throat - though the strep test was

negative. I expect we will be seeing the rheumy tomorrow - though his regular

follow-up is on Wednesday. Another reason I hesitated in calling with his

regular rheumy away is I really don't want raising the steriods to be the easy

answer - we have to come up with something else. Oh well, I guess that's it for

now - I'm sorry it's taken so long to write again. I will try to update you all

tomorrow. Thanks for being there!

Love you guys!

Val

Rob's Mom (6,systemic)

In a message dated 4/11/2004 12:03:59 AM Eastern Daylight Time,

snooksmama@... writes:

>

>

> Has anybody heard how Robbie is doing? I am really worried about him.

> Val, can you give us an update?

> and Rob 14 Spondy

>

>

>

[Guest guest]

Val Hugs and many prayers and good thoughts

for Robbie! I know its this seasonal change for me

right now!

HPLTA

Rusty

[Guest guest]

You are in our thoughts. We were just where you are in January. Hang in there. (n, 15, systemic)

Re: Has anybody heard from Val about Robbie?

Hi everyone - I want to thank everyone for their well wishes. There is no denying that we are in a full flare. He has gotten progressively worse everyday. No rash - but Rob has often been even weeks into a flare before we see a rash. He started with the fever Thursday night - and has had little relief since then - the fever comes down with the Motrin, but shoots right back up when it wears off. He has had maybe 3 good hours each day where he is actually up and walking (JRA shuffle) - Last night we almost made a trip to the ER - but his 105 plus temp finally broke and his heart rate slowed down - the only reason I didn't take him was that he wanted to be home Easter morning. He got to do a small egg hunt before he tired out today. Since the Motrin is helping I will keep a close eye until tomorrow - when his rhuemy gets back from leave - I did talk to his office - Friday - but that was before his temp was getting as high as it has been since. He is having pain in his arms, legs, back, shoulders and occasionally has a sore throat - though the strep test was negative. I expect we will be seeing the rheumy tomorrow - though his regular follow-up is on Wednesday. Another reason I hesitated in calling with his regular rheumy away is I really don't want raising the steriods to be the easy answer - we have to come up with something else. Oh well, I guess that's it for now - I'm sorry it's taken so long to write again. I will try to update you all tomorrow. Thanks for being there!Love you guys!ValRob's Mom (6,systemic)In a message dated 4/11/2004 12:03:59 AM Eastern Daylight Time, snooksmama@... writes:> > > Has anybody heard how Robbie is doing? I am really worried about him.> Val, can you give us an update?> and Rob 14 Spondy> > >