Jacob update: Sorry for the late update, but were home! Our wrap up meeting with Jacobs medical team went good. We still dont have a specific inflammatory disease, but theyll continue to work on that. With his tests results/cells, they can continue to do research and try and figure out what is driving the inflammation in his body. The steroid is working great, but the side effects are going start taking a toll on his body. Without steroids, the inflammation would be damaging to his organs so thats why the steroid has been the best option so far. Our next step, is to find a treatment that would allow him to taper off the steroid or at least be on a lower dose. We are going to try Tocolizamab. Its an infusion that hell probably get once a month at childrens hospital. It should get in his system quickly so by his 2nd dose well know if he is responding to it. If he does, then well slowly taper him off steroid and see how he does. So over the next several months well be trying different treatments to see which one works best. Its going to be a process of elimination. But if he starts to have a flare up or seems in pain, then we always have the option to go up on steroid, which starts working very quickly. We are ok with this plan, and happy that the NIH doctors are going to continue working on his case. We are planning on going back to NIH next year, but if he is having problems theyll see him sooner. Well be working with jacobs amazing rheumatologist doctor, Dr. Dimitriades. Shes at childrens hospital, and over the next several months well be trying a couple different options. Thank you all for your donations and prayers on our trip! Our trip to NIH was very important for Jacob and it was so much fun for the kids, they had a blast at the childrens inn! Keep praying for a little man, love yall! God Bless!
Posted on: Mon, 29 Sep 2014 00:48:59 +0000
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