Monday, January 21, 2008

Doctors aligned - check!

Kingsbury (ped. Rheum) wrote a lengthy email to me re: Foster & next steps & we just spent 37 minutes on the phone. Ryan – remember when Goodman said we weren’t her HARDEST case, there’s a boy they are having problems with, but at least he’s been controlled at one point or another? That family saw Foster last week on Thurs or Fri, so Kingsbury will be talking to them tomorrow to hear what foster recommends as next steps. WE will want to talk to him about that when we see him.

Re when we see him: Goodman will call him from our appt (wed 23rd) & if its not positive – he doesn’t want to see us on Tuesday (29th) , he will want to see us sooner (later this week) so we can get in NEXT week to start the pulsing of the Methylpred (see below)

Here’s a synopsis of what he said:

  • Don’t want you to feel that I am not in your camp, I will do everything…
  • Its on our agenda (CARRA & other ped. Rheum’s) that we are WELL AWARE (more than ophthalmologist) of trying to make inroads of JRA induced Uveitis.
  • My concern is that we use medicines that are least traumatic to Charlotte at her age & stage of issues. The drugs I am recommending are not without their inherent trauma. I want to make sure that we’ve give her the chance of less traumatic treatment
  • That said, I’m not going to wait for mtx to kick in – try a different strategy

Next Drugs: Remicade & myra (I didn’t get this correct) are probably better

  • REMICADE: It’s not standard of care by insurance companies. It’s approved care by ped. Rheumatologists – but this will have to be made a case to insurance & Goodman & I will make the case, “We cannot wait for this for this reason, there for we are making the case for this treatment”.
  • methylpred can be intraven. but remicade will be what we go to (answer in 1-2 weeks from insurance company if they will ok coverage of it) – while we are waiting for that we could try methylpred. That’s a cheap medicine.
  • How it works: for 3 consec. Days – get her in upstairs (one floor above his office) , pulse them hard for 30 minutes each day. Its where the cancer kids go. (RYAN – this is what we would do at the beginning of next week if we saw no improvement on Wed).

Re Teamwork:

  • give you the understanding that, & this is my take, all rheumatologists NEED the ophthalmologists to guide us on the fruits of our labor & we will react according & make treatment strategies.
  • we use all the medicines that ophthalmologist never would. So you have a situation in this condition that a ped rheum usually manage the drugs, but we need the input of the ophthalmologist of which way its going
  • we do medical management – and ophthalmologist tells us how the drugs are doing.
    RE OHSU – Rosenbaum / he’s an adult guy & is NOT an ophthalmologist. Eric suher – he & I have shared several patients & he’s turned all the medical management over to me.
  • (SHOULD WE SEE FOSTER NOW? Kingsbury says) Best use of your resources - if we went down my pathway & still got no response. But it sounds like we are on the same thought process of where to go next.

Send Kingsbury’s email & recap of our phone call to Foster & ask “Do you agree?” For us, its not a matter of if we see Foster, it’s a matter of WHEN. So I want to hear his thoughts on Kingsbury’s medication recommendation & get consensus around the table.

And since all of this has taken all day, Charlotte hasnt taken a nap, and Emma & ELlie are trying to build a fort in the living room & I can hear their unhappiness with little sister who is not being cooperative with the building. But they are good sitters, now I hear tickling (away from the fort). Emma is going to bake some brownies tonight (all by herself), so I am headed to turn the oven on!!

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