Madison was diagnosed with nephrotic syndrome about 6 months ago. She has been on many different doses of steroids since then, trying to ween off and get in the clear. She was in remission once, and then got sick only a few days later and relapsed. Her doctor had a goal of getting her off her medication about 3-4 months in, as any longer could be dangerous long term. We were approaching 6 months and were very nervous if she continued to not respond. About a month ago we started a strategic plan to get her off. She slowly moved down from 7 pills a day, to 4, then 2 and finally one. She’s been negative for about 3 weeks on this plan and hasn’t needed medication for about a week….which means we are back in remission! Madison was thrilled to hear no more pills everyday! We will do our best to keep her healthy and see how long her kidneys can handle on their own with no intervention.
After school, Madi and Nana headed to Grandview. Madi worked hard with Kate and Emily. Some of her newest exercises are to develop good upper body strength so she can learn to hold her single point canes with a good grip and press firmly into the floor to keep her canes stable.
Thank you for all the support!
One thought on “Day 992: Back In Remission!”
What wonderful news