Thursday, March 10, 2011

well - it's been a while. Ada went a year and a half without any problems, then last summer she had a relapse. She did a run of prednisone and was OK for another 4 months. At the first of the year she did another course of prednisone, but shortly after she went off she has relapsed again.

She is going back on prednisone, a higher dose this time, with a quicker taper. We'll cross our fingers that it will hold for a while so we don't have to talk about more of the intense auto-immune drugs.

One other thing - she has not had any illness to trigger this, but she is congested from allergies. We are going to aggressively treat her allergies and see if that will help keep her from relapsing again.

2 comments:

Unknown said...

Sorry to hear about Ada's relapse. I am sure she will respond quickly to treatment and hopefully this will be her last relapse.

Your blog has been such a comfort to me. My 3 yr old daughter was just diagnosed with NS in late February. She is currently on Prednisone and responded quickly to treatment, but I know that the tapering will be a better indication of what is to come. Her edema has subsided, but she has suffered some Prednisone side effects including water retention around the abdomen (and moon face). We've reduced sodium but the abdominal swelling remains and I worry about the pressure on her heart and lungs. Reading about Ada has helped me find comfort and reassurance with all the ups and downs NS has to offer. I have not found any other resources that have been such a comfort when I start to fear the worst or read about some worst-case scenarios - the reason my nephrologist told me not to read anything on the Internet in the first place - but how can you not help but read when it is your child and there is so little known about this.

Ada is in our thoughts and we will continue to draw inspiration from her as we chart our own new course with NS. For all moms if NS children - thank you for this blog.

How do we know said...

Thank you a whole lot for this blog. My son was diagnosed this week and i have no clue what to do! This blog gives me such a sense of connection!
The nephrologist said to start treatment rightaway, but the regular ped has asked us to wait for abt 10 days, to pray as hell, give him low sodium and watch the protein levels daily. A lot of kids go into auto remission, she said.

I hope Ada is well again soon.. and once again, Thank you for starting this blog!