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).
- 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.
MY NEXT STEPS:
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!!