Tuesday, April 21, 2009

Acceptable vs. Recommended

Interpreting words of an email can be tricky. And all week I have been noodling an email response regarding Charlotte's path with her medications.

I had sent an email to Dr. Stephen Foster in Cambridge Mass who we saw last spring for Charlotte's uveitis & the email asked him his opinion on our pediatric rheumatologists recommendation of pushing out our intervals of Remicade from our current "every 4 weeks" to then every 5 (for four doses) then to 6 weeks. Our ped. rheumatologist wants to start stretching intervals to see if the medication is working & feels its the "next logical step."

Dr. Foster's response was "If she's been off of steroids for 6 months without a flare in her eyes, its acceptable to stretch intervals."

So for 4 days I have been sitting on that sentence, noodling, trying to interpret... and finally just sent him an email tonight asking him....

"You say its acceptable, but do you RECOMMEND it?!"
The unfortunate part of not being in the same location as the specialists is to be in front of them, having that one on one face time to see body language, probe conversation further & discuss next steps more often.

I am so appreciative that Dr. Foster is accessible to us by email, and I always remind him of his patient: when we visited him, her current medications & a brief little timeline so he can hopefully have a quick synopsis to jog his memory.

Acceptable and/or recommended? An answer will come tomorrow...
Hanging out at the hospital for Remicade treatments takes about 1/2 the day - over 4 hours. We pack toys, food & the pillow because screaming does finally poop one out. Charlotte has been doing these treatments since April 2008. Its doing its job of keeping the inflammation in her eyes, uveitis, at bay. Children with JRA proactively see the opthamologist because uveitis can only be detected through a slit lamp. The eyes are another pocket of fluid like the joints, for cells to congregate & cause problems like rheumatoid arthritis does to the joints.



It is so tricky, and it can be hard to get them to commit it seems.

I am holding out for a firm response, good results, continued health.

Farmer*swife said...

Oh Gosh. My daughter has been through a couple of eye surgeries and a urinary deflux injection. I just couldn't imagine having to do this with her on a regular basis...

My-Oh-My. Strong Gal, Strong Mom. ;-)

(Found you at the Real Moms. I'm Glass_Half_Full)