Ada has responded very well to the Tacro. She has been in remission all year so far, the longest in a long time. In June she started spilling again, but only at a 2. The difficult thing was she was suppose to be going on an LDS Trek - hot, dry weather with miles of walking. The PA was worried about her going while she was spilling, but after discussing it with the Dr, considering there would be ample medical staff on hand, we - her parents - were also going to be on hand as part of the staff, and she would only be an hour and a half drive from the children's hospital, she received medical clearance to go.
While she continued to spill on trek, she did not worsen and did not become swollen - what a blessing. After she got home, we went to see her Dr. We talked, the Dr. verbalized all his thoughts, then said he was inclined to just let it ride for another couple of weeks. If she didn't improve, then we would have to increase her dosage.
I agreed to this as it felt right. Sure enough, about 5 days later her protein went back down to negative and she was doing great again. So glad she is doing so well.
As to the medicine, we did a lot of calling, checking with various pharmacies and our insurance. We checked all the medication coupon plans. Eventually we found that by appealing for a change in pharmacy we were able to get the cost of the medicine down to $100. Although that still seems like a lot, it is pennies compared to the $600 we were originally quoted.
3 comments:
Such great news. Ada's blog was one of the first things I found when my daughter was first diagnosed in 2011 and still 4.5 years later I check it periodically to see how she is doing. Hearing about Ada's journey has helped me through many of the ups and downs that is NS. Thank you for sharing her story and so glad the tacrolimus is working.
I just wanted to tell you I'm glad you have a blog. My son is a twin with a sister and he ended up with NS. It started Christmas last year. It has only been a year and he has just become steroid dependent. It has been a little emotional for me these last few weeks. Our next apt. Is in 2 weeks to choose a new medication. And the ones that seem best to choose are the ones like chemotherapy (the main ones you were just talking about). It breaks my heart to have to choose something like that :( but I do have a question... have you found out about any food allergies Ada may have? And is so have you done anything with her diet accordingly?
Kimberly, I'm so glad this blog has been helpful to you. I hope your son's next treatment goes well. It is scary, for us it ended up being a good choice with very minimal side effects. Trust your instincts.
We have not found any food allergies, but she does have seasonal allergies, and they seem to correspond with her relapses. They don't know what triggers her nephrotic syndrome, however, her doctor agrees it could be her seasonal allergies, so we try to stay on top of them.
The only modifications we make to her diet are continuing to eat reduced sodium.
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