A few months before Jackson's 3rd birthday he was diagnoised with Oligoarthritis Juvenile Idiopathic Arthritis and Uveitis. Our lives would be forever changed and I could have never prepared for what we were about to go thru!
Thursday, April 7, 2011
Frustrated with Rheumatolgist
Up until this point I have been so happy with Jackson's Ped Rheumatologist. A few months back Dr. Vehe had said that Jackson's albumin levels in his blood have been slowly dropping at each blood draw and were now below normal and he was going to monitor this very closely. I was told it could signal a GI system problem. We are suppose to have labs drawn every 8 weeks but its been 3 months. I have asked Dr. Vehe at the infusion in March if he was going to get labs to re-check the albumin and he said no well do it next time, ok fine. So we go for next infusion which was yesterday and I have the doctor on the floor call Dr. Vehe and ask if we are going to get labs today because its way past the 8 weeks and he told her no!!!! I am beyond frustrated. First off he is suppose to get them no matter what to make sure the nasty meds he is on aren't harming his organs and second I thought we were monitoring the albumin levels. So I think I am going to just call Jackson's Ped here and ask her to do it, she is awesome. For quite a few months we have noticed Jackson's left knee to have a little bit of fluid and swelling. He has also been complaining about it a lot in the last few months. At our appt in March Dr. Vehe confirmed the presence of fluid and said if the swelling didn't go down we would maybe up the remicade dose. Well the swelling hasn't gone down and it causes pain for Jackson. So yesterday after telling Dr. Vehe this and telling him about the night it hurt so bad Jackson couldn't walk he says that Jackson is hyper-mobile and he probably just gets sore from being so flexible! Seriously!!! Then he says depending on Jackson's eyes on the 20th (which had cells in them in Feb.) we should maybe switch his infusions from 4 weeks out to 6 weeks. Yeah great I hate the infusions but this is completely opposite of what he said the month before and his disease has not improved. I wonder if he just has to many kids he sees and forgets what he says and then has a different opinion?! I feel that if he keeps up changing his mind about treatment I may have to find a different Ped Rheumy. We see Dr. Bothun (eye doc) on the 20th and I will probably voice my concerns with him about Dr. Vehe and see what he thinks. Dr. Bothun has been awesome and was the one who actually finally got a diagnois for Jackson. So April marks the 1 year anniversary of when we started being sent from specialist to specialist having test after test done to find out what was wrong with our baby boy. We were told everything tumors in the lungs, neuroblastoma, horners syndrome. 1 year ago this was the worst month of our lives, I was so scared. It would take until the middle of May and our first visit with Dr. Bothun before we got a actual diagnois. Still scary and sad but it sure beats the tumors and neuroblastoma that they had thought and tested for at one point! What a year it has been and everything my little boy has gone thru! He is such a trooper though and just full of life! It broke my heart yesterday when they put his iv in and I had to hold him down as he is screaming "please don't." Then when he saw his blood on his hand he got scared and started crying so hard. On a positive note a week and half ago we got our dog back!!! She had been missing for 20 days. I am so happy to have her home and so is Jackson. He keeps saying he missed her so much! Thanks for checking in! Sara
My name is Sara, I am married to wonderful guy named Mike. We have a 7 year old boy named Jackson who was diagnoised with Oligoarthitis JIA and Uveitis when he was 2 years old. Getting to this point has been a hard road and I am sure more to come. We also have a 3 year old little girl named Brynley.