Monday, January 21, 2008

Getting them together

Here's my email to Kingsbury AND Foster:
Hi Dr. Kingsbury,
I have included Dr. Stephen Foster on this email ( so he can see our communication (see below for Dr. Kingsbury’s communication).

Dr. Kingsbury - I want to thank you VERY much for your response & your thoughts for Charlotte, in email & the call this afternoon! I know how deeply you are on our side, both Ryan & I do. Thank you for walking me through your thoughts today.
Dr. Foster, I want to thank you as well, from the slopes of Aspen you gave us very good points to discuss & we appreciated it immensely. Hope there was some good snow for you this weekend!

At this point in time, it sounds like both Dr. Foster & Dr. Kingsbury on the same page for next steps. Please check me on this:
  1. Wednesday 23rd: Ophthamology appt.
    If the oral pred forte (5.0 ml in PM, 2.5 in AM), does not make a significant change by Wednesday (she is a +2-+3 in both eyes currently) then we will get into Kingsbury later this week (earlier than our schedule 1.29 appt) to schedule intravenous next steps. (MEDS: Still on MTX / week 3, as well as hourly pred forte drops in each eye)

    Next Drugs:
    + Methylpred for 3 days intravenously while we are waiting for insurance to ok the use of REMICADE (which Kingsbury/Goodman will make the case for this treatment.)
    + REMICADE will be what we go to (answer in 1-2 weeks from insurance company if they will ok coverage of it)

    Dr. Foster, we would appreciate your knowledge on our team & want to make the trek at the most opportune time. If we are in consensus for next steps, I believe we would want to have Charlotte examined after this attempt. Please share with us your thoughts!

    Thank you again! Best, Erika

    -----Original Message-----From: Kingsbury, Dan :LPH Peds

Dear Mr. & Mrs. Cox,I share your disappointment. I concur with Dr. Foster's statements on next levels of treatment. After talking with Dr. Goodman last week, I had planned to offer IV methylpred if there was no improvement with this week's visit. I was also planning on talking to you about TNF inhibitors (i.e. Remicade) at the upcoming clinic visit. I have a number of patients on Remicade for this problem, and so far, ALL have responded. The only reason that we have not gone there yet, is that typically we follow a systematic approach with topicals followed by systemic (oral or IV) steroid treatment and methotrexate. In rare intances we have to ramp up treatment to the degree your daughter has commanded so quickly. Remicade, and other TNF inhibitors, are not considered first line therapy in juvenile arthritis by the insurance companies. To make matters worse, these medications are NOT approved specifically for the treatment of iritis associated with JRA. However, there is a large body of scientific evidence to support the use of these medicines in the treatment of JRA-associated iritis. The pediatric rheumatology community, through the CARRA organization, is currently involved in a clinical trial studying Remicade in JRA-associated uveitis. I believe that we are building a solid case to request coverage of Remicade by your insurance company, assuming that we do not see improvement very soon.

Dr. Foster is right, in that methotrexate takes time to kick in, quite possibly longer than 3 months. I would not wait that long if our current actions do not result in substantial improvement.I appreciate the fact that you have included me in the email conversations with Dr. Foster. I have had two patients see him, one just last week! I would not dissuade you from going to Boston whatsoever. I just want you to know that I have a detailed plan of action, something you may not have appreciated since I was waiting to discuss treatment options after Charlotte is evaluated by Dr. Goodman this week.

I am not in the office today but will try to reach you by phone. Dan Kingsbury

P.S. for some reason on this web-based email system, I cannot find Dr. Foster's email to add to the "cc" list. If I search for it, I risk losing what I have written. Feel free to forward my reply his way with any additional communications you have.

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