This is the story of Jenna (AKA Bean). Diagnosed at four years old with Juvenile Idiopathic Arthritis and Uveitis. This is her journey....
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Friday, November 14, 2008
It Wasn't Good News
Something in my gut told me it wouldn't be. Jenna went to see Dr. Pirone today for a checkup for her Uveitis. On Monday it was still just the left eye that was affected and it was showing improvement. Today....Friday....the right eye now has inflammatory cells and the left eye looks no different. SO instead of decreasing drops in the left eye we are now INCREASING drops and now doing them in BOTH eyes. Dr. Pirone is so great with her and Jenna REALLY likes her. BUT she is referring her to Dr. Berman who deals with only kids and has more expereience with Uveitis. Jenna doesn't seem herself today. She is very quiet, and is sleeping alot. Maybe she is coming down with something. Maybe she is about to have a flare up. Maybe it's nothing. I don't know. Oh yeah....and Dr. Berman can't see her until December 23rd. Nearly SIX weeks from now! Yikes. That is a long time to not have her eyes checked isn't it?
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4 comments:
Sorry to hear it wasn't good news. :( It is so scary to go through all of this, I know! That is far off to have the appointment. I would call every week to see about a cancellation. You can see if the doctor is on the list of specialists at www.uveitis.org. I think it was under patient info. You didn't want to take the drive to Cambridge? The doctor can coordinate care with Foster too. Ask how many cases he has dealt with in his career. Jenna being a girl and young, diagnosis can be tough to treat. I have been obsessive reading since Jacob was diagnosed in February! I don't know if you saw what happened at our origional opthamologist? We had just been there and the doctor said Jacob's eyes were clear. We saw Foster shortly after and his eyes were not!!! The other doc started to wean meds(drops). Foster put him on MTX immediately, it was so overwhelming. When that didn't work he started the Humira, quickly! I will keep following Jenna's story. She is a doll!
I do still want to see Dr. Foster. I sent an email request for an apptointment. I explained the urgency so hopefully I'll here something early this week. Der...didn't even occur to me to ask about a cancellation list at the other eye doc. I have been reading obsessively too! I stiil feel like I just don't know enough.
Hi again! Just call the office. They will get her in sooner than the other doctor. Tell them that her cells increased even on the drops. And you very worried. They are really easy about scheduling. If you call let me know what happens! I still have to figure out when Jake's appoinment is there. I may call there in the morning myself. I am getting a big calender to hang in the kitchen like you said! I really don't like being disorganized!
Hi Amy, Nodin went to Dr Berman when we lived up there and he was going to do the surgery on his eye but we moved. He was the one who diagnosed Nodin with his Golden hars syndrome ( the other 2 syndromes were by the another specialist). But he is the best at what he does. The docs in Boston at Children agree too :) . We have been there too. They are great there also. You can always keep calling the docs to check for cancelations. One thing I have learned over these last 2 years is to be PERSISTENT! they just get kinda sick of us LOL! I will have to look up what Uveitis is . I have never heard of it. I love the blog too ;)
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