After over a year and a half we now have an official relapse.
At the end of June her proteins spiked, but they came back down on their own, which is great. But early July they went back up again and have stabilized at a 3 now for a couple of weeks.
Due to a new baby coming and an unexpected family funeral, I had postponed notifying the clinic, hoping she would resolve on her own. She was not swelling, or sick, and I took her to the Dr for a blood pressure check and it was good, so I continued to put off calling. But today I decided I needed to notify the clinic and find out where we go from here.
Her nurse, Debbie, was very understanding. We talked about where we are at, how things have gone, and then determined that the best thing to do at this point is to put her back on the prednisone, using a relapse schedule, and we would schedule an in-clinic appointment after things have settled down a little around here after the new baby comes (hopefully this week).
So, back on the "icky medicine". Glad she can swallow the pills instead of having the liquid.
4 comments:
My name is Olga and I have a 5 year old son who was diagnosed with Nephrotic Syndrome last year. We just experienced a full relapse and it kinda caught us off guard. He is an active little boy but when he started asking for a nap; I knew something was wrong.
It felt so good to read your blog as I can relate to a lot of your experiences. We are back on prednisone and the last 2 weeks have been difficult as the mood swings are so emotional and longer than last years. We are on a roller coaster with this disease. Thank you for your words of encouragements.
P.S. Don't know if know this, but the Presidone comes in grape flavored chewable tables(they are fairly new in the market).
Olga
San Jose, CA
Im so sorry to hear she relapsed. How is she doing now? I know it's been a while since this post was added. We are keeping you in our prayers.
Grayden and Wendi :)
Hi.
I really appreciate your blog. My daughter had nephrotic syndrome and is 2 years old. We are planning on starting Cytoxan soon. I would love to email with you. How can I get your email?
Thanks,
Amy
Amy - you can e-mail me at mommabearblogs@gmail.com I would be happy to visit with you.
Dayna
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