1 Year + 188
1 Year +188
Last week Grandma B was here and was the highlight of the week for sure. She and Tate made a cake, I got to go on a food tour as an early Birthday day out and Keira and Gram did some Birthday shopping. A nice change of pace for us all!
Neurology brought a change in meds to try to get on top of worsening migraines and also hopefully help with Tates racing heart from her POTS. Migraines aren’t new but have been well controlled for the last year plus. Identifying the shifting neuro symptoms as something more sinister (e.g. inflammation) is on a wait and watch. Eye dilation and photos with exam tomorrow will give another view.
I spent a lot of time this last week with various Dr’s on the thoughts of MT8 related to Tatum moving forward. There have been many nationally reaching out to Tates Dr’s to learn how she is faring post transplant. Due to her unfavorable results, transplant is not a popular option. To this date, only a few have been transplanted with mixed results but all better than Tate. Most are now moving away from transplant now as a solution. The NIH currently has 22 kids in their study. All have syndrome characteristics and all fall within 40-90% MT8 in their cells. Tate was at basically 100% in both her bone marrow and peripheral cells pre transplant and has never displayed any syndrome characteristics. The more we Learn about inflammatory MT8, the more it seems we’re missing something where Tate is concerned. Tate just has a much greater level of systemic involvement than the others documented. The only one with CNS involvement, lupus like symptoms and so many antibodies to so many organs, plus more. So we keep searching for more information to lead us to a successful treatment option.
In the meantime, we’ve made the decision to move forward with the implanted intrathecal pain pump. Trial admission will be 2-5 days hopefully within the next month.