1 year + 21
1 year +21
This last week we’ve been sitting on some tough news. It’s believed that Tates lupus like disease process is back, resurfacing after lying dormant, or she’s developed something completely new. Many of the symptoms are familiar, with a twist. Everyone-including her team is trying to picture what this now will look like into the future. For now, we’re tackling it one step at a time. There’s been an excessive amount of communication amongst Tates specialists trying to come up with the best plan.
Three days at CHC again for appointments this week brought new planned surgeries, follow ups and long term treatments.
Our long 6 month wait for the adult movement specialist at University took place on Tuesday. A wonderfully kind provider, after showing videos to her team, they believe the severe episodes in August were from central nervous system inflammation caused by an unknown source. Tates spinal tap during this time confirmed inflammation. This is actually best case scenario with the hope that it was a one off. The effect of the MT8 in the bodies tissues is unknown, so Tate will see a genetic/immunological neurologist movement specialist next who will continue to monitor.
Tates on going tremors are a separate issue perhaps connected to what is believed to be continued CNS involvement. As usual, an intertwined collection of issues with remaining questions.
Rheumatology was seen today. A decision was made to restart Immunoglobulin infusions. Tate received these for years pre transplant. At that time, they were primarily used to combat brain inflammation. These were stopped post transplant by BMT as it was anticipated they would no longer be needed. With the increase in inflammatory symptoms, both systemic and CNS, Tate will be back to receiving two high dose back to back 8 hour infusions each month. Steroids will be added and Tate will be back on an immunosuppressant. IVIG is very expensive as it’s made from up to 10,000 donors per bag. It’s then purified to be 90% antibodies. Tates inflammation is believed to be caused by autoantibodies-her body attacking itself. IVIG floods her with good antibodies to combat this and boost her immune system. The prayer is that this in combination with steroids and immunosuppressants will reduce inflammation, relieve pain and halt any progression. A tall order as we aren’t sure all the symptoms are coming from the same source. We are hoping for a quick approval by insurance to get this going ASAP.
None is news we were expecting, but after an especially rough past 6 weeks, we are so thankful to have a plan to try to improve Tates quality of life. Bone marrow biopsy and FISH study from last week is still pending.