Friday, January 18, 2008

I sent Dr. Stephen Foster the following email.

Dear Dr. Foster,
I am the mom of a 28 month old girl who is ANA positive, has pauciarticular JRA (4 joints since being diagnosed) & is battling anterior uveitis. I have appreciated your site & your information & would like your advice on our next steps.


Our pediatric rheumatologist is Dr. Daniel Kingsbury at Emanuel Children’s Hospital in Portland, OR. Our ophthalmologist is Dr. Shawn Goodman, who knows of you & your work. She is not listed as a specialist.

Below is our daughter’s history, & where we are today. In a nutshell:
© Since November 14th (our 1st eye exam since being diagnosed with JRA), we have not been able to get either eye under control using hourly topical treatment (Pred Forte – but used the generic prednisolone).
© We are on day 12 of orally taking pred forte (5 ml in AM, 2.5 ml in pm)
© We are headed to week 3 of MTX (only 2 injections so far)

Our Pediatric Rheumatologist said there are more things to try, however, based on our story & what we are battling, we understand that time is not our friend & we would appreciate your feedback on next steps. My question to you is – do we come to Boston? Do you recommend Dr. Rosenbaum in Portland (what do you know about him) or do we go to Stanford (what do you know about Dr. Ira Wong?)?

Thank you for your feedback, support & your work!
Best, Erika Cox (Mom of Charlotte Cox DOB 9.24.05)

James T. Rosenbaum, M.D. Professor of Medicine, Ophthalmology and Cell BiologyAssistant Dean for ResearchHead, Uveitis ClinicDirector, Inflammation ResearchCasey Eye Institute3375 SW Terwilliger Blvd.Portland, Oregon 97239-4197

Ira Wong, MD, M.S.
Background PublicationsDirector, Uveitis and Ocular Immunology Dept.Francis I. Proctor Foundation Website95 Kirkham St.San Francisco, CA 94143-0944Clinical Professor of Ophthalmology, Cheif of Uveitis ServiceStanford University Medical School, Stanford, California

10.19.07
Dr. Daniel Kingsbury
“She obviously has JRA”

11.8.07
Dr. Kingsbury
both knees are injected

11.14.07
Dr. Shawn Goodman
Diagnosed Uveitis
Pred Forte (However we are given prednisolone by pharmacist & don’t realize it till 1.16.08) hourly every day for 2 weeks, both eyes

11.20.07
Dr. Goodman
Both eyes show improvement
prednisolone every 3 hours for both eyes

12.12.07
Dr. Goodman
Both eyes shot back up to being inflamed
Back on Predno every hour for both eyes

12.20.07
Dr. Kingsbury
he discovers left wrist & right ankle

12.28.07
Dr. Kingsbury
Both joints (wrist/ankle) are injected

1.2.08
Dr. Goodman
back on prednisolone every hour in left eye, every 2 hours in right eye
prednisolone hourly in left eye
Every 2 hours in right eye

1.6.08
Dr. Kingsbury (phone)
Pred Forte orally (for 1.5 weeks) till we see Goodman NEXT week (we also just started mtx this week)
2.5 ml oral Pred Forte

1.7.08
MTX weekly .4 ml

1.16.08
Dr. Goodman
Right eye has shot back up & left eye hasn’t decreased it level of inflammation. Realized Charlotte was NOT on pred forte, but the generic form of prenisolone. Recommendation from another eye dr (neighbor) was that pred forte is better, get on it, so Dr. Goodman wrote out our prescription for NO SUBSTITUTIONS.
Up the dosage of oral pred forte to double amount. 5 ml morning, 2.5 ml at night.
Pred Forte in each eye every hour.

1.23.08
Dr. Goodman
Next appt

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