Wednesday, October 30, 2013

Eyes are flaring, disease getting worse

I should have updated after Jackson's neurologist appointment and I didn't.  We still don't have answers for that.  The neurologist in Rochester said the brain clacification is from the methotrexate but when talking Dr. Vehe (Jackson's rhemotolgist) about it he does not agree.  He was waiting for images of mri and ct scan and report from Rochester and from there he was thinking we should get a 2nd opinion.  Jackson has a appointment in Minneapolis to see Dr. Vehe and get a infusion this coming Monday so I will talk to him then to see where we are at.  So I had been feeling better but now I don't know.
We saw Dr. Bothun a couple days ago and there has been no improvement in his eyes since being on the steroids.  Very disappointing news!!!  So we increased the steroids and will increase the remicade at infusion on Monday.  He also wanted to increase his dose of methotrexate but I am not willing to do that at this point until I know if it is the methotrexate causing the brain calcification.  Dr. Bothun was very discouraged about his eyes.  I love how he is so caring and really feels for these kids!  He remembers every detail about Jackson's case all the way from the very first time we met him.  He is the doctor that finally made a diagnos.  Jackson was sedated and in pre op ready for a spinal tap because we didn't know what was wrong with him when Dr. Bothun came in and said he has uveitis and JA.  I asked if maybe we needed to try a different med and Dr. Bothun said its not the med not working its his disease getting worse.  So heartbreaking to hear.  I really wanted to hear oh lets try this med or this or that but not his disease is getting worse.  Since last time Jackson was on steroids for so long his pressures in his eyes went up so we will be watching that closely and checking pressures weekly.  And we will re check eyes again in 4 weeks.
Jackson has also complained about a lot pain lately so he is back on pain meds which seem to be helping.  The negative is we took him off daily pain meds last time because his stomach was being ripped apart so this time he is also on zantac to hopefully help with that.
Thanks for checking in on Jackson!

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