Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Help! I need to find an iritis specialist for my daughter. I'm in Arizona, and based on my research, there are none in this state (surprise, surprise). I have been in email contact with Dr. in Boston and am definitely considering consulting with him, but given the great distance, I have concerns about the practicality of that, and of my ability to afford the expense of traveling back and forth to Boston. My question is whether anyone on this list has personal experience with any of the specialists in California? I know there are some practices devoted to iritis in the LA area. Does anyone have any information? Diane (, 7, pauci-jra in remission, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 - You mentioned the pediatric rheumy who is supposed to be coming to AZ, but I haven't heard any more about it. Let me know if you hear. Maybe an iritis specialist will follow :-) Is Aundrea doing okay these days? How are her tummy issues with the meds? I'm glad you like Dr. Plotnik. I think he's a great person. We met him at a jra conference a couple of years ago and talked to him quite a bit. He's actually an associate of my current doctor. While I like him immensely, and 's current doctor, is rated as amongst the " top docs " here, I now believe I need to see someone who specializes solely in iritis. You may have heard me talk about 's ongoing struggle with iritis. While steroids do resolve the inflammation for her, she has become totally steroid-dependent. Every time we taper her off of them, she flares within a short while. I pushed her doctor, with the help of Dr. , to add methotrexate to the mix. I honestly do not believe she has any understanding of modern treatment protocol for iritis. is still flaring, and I believe the methotrexate needs to be increased as a much higher dosage is often needed to treat iritis than arthritis. This doctor has told me that is unnecessary, that 's rheumatologist is reluctant (I've talked to him, he's not) and that can stay on the drops for many years with no need for anything else!!! As to questions about how we address the inevitable complications of the drops, her answer is that with frequent monitoring, she'll be able to address the complications, ie. let's wait until cataracts or glaucoma develops and we'll deal with it then. No thanks! This woman continually amazes me with her apparently unfamiliarity with 's history despite the fact that we're in there so frequently. Today, she told me that " still " had inflammation in both eyes and I had to tell her that did not have inflammation in her left eye at the last visit. Then it was " Are you giving her the cyclogyl? " She told me to stop it two visits ago! In the past, she has actually exhibited a lack of awareness of 's history of iritis. At this point, I feel 's inflammation has gone on too long, that there is no end in sight with the steroids, and that her doctor knows of nothing to do but just adjust the dosage of steroids up and down repeatedly. I'm frustrated, angry and really need someone I have confidence in. So sorry to vent, but I'm at the end of my rope! Diane (, 7, pauci in remission, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Diane, Is something going on with ? Has the iritis gotten worse? I take Drea to see Dr. Plotnik on Friday. Her eyes have always been fine. He wants to see her every 4 months which surprises me, but I guess he thinks better safe than sorry. You recommended him to us from your encounter that you had with him. he is super nice and worth the drive. Drea is still flaring. Missing an average of 1-2 days of school per week. Better than the 4 days she missed at the start of the school year....I put a call into to see about increasing her methotrexate. Have you heard anything about the new ped. rheumy coming to Phoenix Children's? (Drea 11 systemic jra/gerd) > > Help! I need to find an iritis specialist for my daughter. I'm in Arizona, > and based on my research, there are none in this state (surprise, surprise). > I have been in email contact with Dr. in Boston and am definitely > considering consulting with him, but given the great distance, I have concerns > about the practicality of that, and of my ability to afford the expense of > traveling back and forth to Boston. My question is whether anyone on this list > has personal experience with any of the specialists in California? I know > there are some practices devoted to iritis in the LA area. Does anyone have > any information? > > Diane (, 7, pauci-jra in remission, iritis) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Hi! Yes, I know of a specialist in L.A. Here is contact info: Narsing A. Rao, MD background Publications Professor of Ophthalmology Director, Uveitis Service Doheny Eye Institute website Keck School of Medicine University of Southern California 1450 San Pablo Street, DVR-211 Los Angeles, CA 90033 Tel: (323)442-6645 Fax: (323)442-6634 E-mail: nrao@... Also, there is one in New Mexico Mark Chiu, M.D. 806 Dr. Luther King Jr NE Albuquerque, NM 87102 (505)842-6575 1-800-521-7815 Hope this helps, ' dbornscheu@... wrote: Help! I need to find an iritis specialist for my daughter. I'm in Arizona, and based on my research, there are none in this state (surprise, surprise). I have been in email contact with Dr. in Boston and am definitely considering consulting with him, but given the great distance, I have concerns about the practicality of that, and of my ability to afford the expense of traveling back and forth to Boston. My question is whether anyone on this list has personal experience with any of the specialists in California? I know there are some practices devoted to iritis in the LA area. Does anyone have any information? Diane (, 7, pauci-jra in remission, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Diane, I called in Aug and again in Sept regarding the ped rheumy...I kept being told that he is coming but no date is given. I guess I will make my October call and I will let you know if I hear anything definate. I can certainly see why you are ready to look around for . It is so frustrating when you see a doc regularly and they act oblivious to some key points of your childs history or condition...I always think, why not glance at the chart before you walk in and remind yourself of who we are if you need too! I dont' think her treatment plan makes much sense...Just use steroids until some other fire shows up that you have to put out...I like prevention more than just waiting and then dealing with it. I have heard lots of people on this list that have stated that they have conferenced or consulted a specialist out of state for a visit or two and that they direct the care and have it managed by a local doc....Do you thing dr howard would work with dr foster? or does it have to be an opthamologist specialist? Let me know how things turn out...I say go with your gut. You have been patient for a long time. Your daughters eye sight is certainly worth a few more consulations and your own peace of mind! Your thoughts on bumping up the mtx make since to me...what dose is she currently on? (aundrea 11 systemic jra/gerd)- -- In , dbornscheu@... wrote: > > - > > You mentioned the pediatric rheumy who is supposed to be coming to AZ, but I > haven't heard any more about it. Let me know if you hear. Maybe an iritis > specialist will follow :-) > > Is Aundrea doing okay these days? How are her tummy issues with the meds? > > I'm glad you like Dr. Plotnik. I think he's a great person. We met him at > a jra conference a couple of years ago and talked to him quite a bit. He's > actually an associate of my current doctor. While I like him immensely, and > 's current doctor, is rated as amongst the " top docs " here, I now believe > I need to see someone who specializes solely in iritis. > > You may have heard me talk about 's ongoing struggle with iritis. > While steroids do resolve the inflammation for her, she has become totally > steroid-dependent. Every time we taper her off of them, she flares within a short > while. I pushed her doctor, with the help of Dr. , to add methotrexate > to the mix. I honestly do not believe she has any understanding of modern > treatment protocol for iritis. is still flaring, and I believe the > methotrexate needs to be increased as a much higher dosage is often needed to > treat iritis than arthritis. This doctor has told me that is unnecessary, that > 's rheumatologist is reluctant (I've talked to him, he's not) and that > can stay on the drops for many years with no need for anything else!!! > As to questions about how we address the inevitable complications of the > drops, her answer is that with frequent monitoring, she'll be able to address > the complications, ie. let's wait until cataracts or glaucoma develops and > we'll deal with it then. No thanks! This woman continually amazes me with her > apparently unfamiliarity with 's history despite the fact that we're in > there so frequently. Today, she told me that " still " had inflammation > in both eyes and I had to tell her that did not have inflammation in > her left eye at the last visit. Then it was " Are you giving her the cyclogyl? " > She told me to stop it two visits ago! In the past, she has actually > exhibited a lack of awareness of 's history of iritis. At this point, I feel > 's inflammation has gone on too long, that there is no end in sight > with the steroids, and that her doctor knows of nothing to do but just adjust > the dosage of steroids up and down repeatedly. I'm frustrated, angry and > really need someone I have confidence in. So sorry to vent, but I'm at the end of > my rope! > > Diane (, 7, pauci in remission, iritis) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 - I understand doctors are busy, but come on . . . we're in that office ALL the time. A couple of times, when I took 's sister with us, she though Brea was the patient! I'm all for consulting with someone. I guess it would depend on how often I'd have to make the trip out of state re where I'd be willing to go. I think I'd have to have a pediatric opthamologist here. I'm not sure how open the current one will be to that. However, we have an appointment with Dr. tomorrow, so I'll get his input on the situation. is only on 12.5 mgs of mtx. She was on more than that for her arthritis when she was 3. I KNOW she can go higher without problem. By the way, I emailed Dr. and he responded immediately. He completely confirmed by thoughts about what is being done. She needs to go higher. He also gave me some suggestions for alternative meds if 's iritis is methotrexate-resistant (but I don't think we know that yet b/c the dosage is still too low) He seems really great! Diane (, 7 pauci in remission, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Thank you, ! I will consider those doctors and see if I can get more information about them. Diane (, 7, pauci in remission, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Diane, Dr. is a REAL good Dr. I do know Parent's in Georgia who have made that trip to Boston. Well worth the trip. I also know there's a Specialist who has just got her to Ga. Who worked with Dr or They know each other well. They Consult. As for out on the West Coast I do not know anyone. It is sad to have Specialists not close enough. I would try every angle I could locating one closer. Even if it is a Adult Specialist. Call then ask Questions about Iritis. Do not tell them the child's age until you know if they treat people with this Condition. Then ask about the Appointment and tell the age of the child. Please let us know what choice you make and also what is done as many parent's read the post's. I am wondering if Dr would recommend someone out in your area. Then Consult with him Via Phone or Email. This would be another option. Having a Eye Specialist there call and talk with Dr . Robbin Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Thank you so much, . That is information that is good to know. The drive (or flight) would be so much easier to either location. And it is important to me that these doctors treat consistently with Dr. 's recommendations. Diane (, 7, pauci in remission, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Thank you, Robbin. I know Dr. 's reputation is excellent and I have not ruled out the possibility of traveling to Boston. The great thing about this board is the ability to obtain such quick information which includes personal experiences. I have a list of iritis specialists from Dr. 's website, which is a start. However, hearing a personal opinion or getting information that a particular doctor is respected by Dr. is invaluable. I now have some options to consider and discuss with 's rheumatologist tomorrow. I'm hoping he will have some input too. Thank you for responding. Hope all is well with your daughter too! Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 No problem : ) Dr. Rao is a doctor that Dr. has a lot of respect for. The Dr. from New Mexico came from parents from around that area (Colorado, NM and AZ) whose children have uveitis. I guess he works with Dr. s recommendations that were made from evaluations. You could post a question to either parents, or members with uveitis about doctor recommendations at www.uosg.org I am not sure how far of a drive either one of those would be for you. Hang in there, ' dbornscheu@... wrote: Thank you, ! I will consider those doctors and see if I can get more information about them. Diane (, 7, pauci in remission, iritis) Quote Link to comment Share on other sites More sharing options...
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