I Can't See!

The last year was a pretty typical year.  Occasional relapses, treatment with prednisone, taper, enjoy a couple months off, relapse, repeat.

But last week was a little different.  She was in the final week of a taper when she relapsed again, fast and hard.  She swelled up more than she ever has since her original diagnosis.  According to the scale she was carrying about 20 lbs of surplus water.

The scary part was she told me she couldn't see.  Not that she was going blind, but her vision was really bad.  I called the Drs office and they were concerned about a rare side effect of prednisone where pressure is increased in the eyes.  They also noted a slightly elevated glucose level in her last blood labs and said it could be attributed to that.

First we went to the store to get her some clothing she could wear, because none of her clothing fit and she was very uncomfortable.  Then we went to the hospital for bloodwork.  Finally we tried to find someone who could get her in for an eye exam.  Being the end of the year, that was challenge.

It was a scary time, because vision problems are always concerning, and the idea that we may have to discontinue the use of prednisone would mean needing to look at a different course of treatment.  Thankfully, the optometrist was able to rule out glaucoma and cataracts.  All of her vision problems were attributed to the swelling, and as the swelling started to resolve, so did her eyesight.

Her proteins are now dropping, the swelling is significantly reduced, and her eyesight has returned to normal.  We are grateful for the medical care that is available to us and especially grateful for the many prayers that were offered in her behalf.  We know that they make a difference in her, and our, life.

Happy day

One blessing we enjoy is that Ada is rarely sick, so her NS is seldom triggered by illness.  However, shortly after Christmas she came down with a pretty intense cold, was very congested, and started spilling proteins.  (come to think of it, she is always congested with a relapse, I wonder which is the chicken and which is the egg?)

Anyway, she was spilling up to a 3 (on a scale of 0 to 4+), but never quite made it to a 4, so I decided to just keep watching until the cold was over and see if there was any chance it resolved on it's own.  Low and behold, as the cold subsided, so did the proteins.  Today she announced that her pee test had arrived back down at negative.

We are so excited that it resolved on its own.  I'm hoping this is an indication that she is getting close to outgrowing her NS.  Finger's crossed and counting blessings - but not ready to hold out breath ;)

Update and a dexoscan

I have been derelict in posting Ada's nephrotic events.

After her relapse in early june, she had another relapse in July within a week after she got off the prednisone, so she got to go to our family camp on prednisone, but it didn't stop her from having a great time.





We had to go see the nephrologist in early Aug so they could evaluate her.  Because she had experienced 3 relapses over the summer, with only a week break from the prednisone, it was time to start talking stronger medication.  We discussed the alternatives, and I didn't really feel good about any, except the new one that the Neph honestly doesn't think works, he just thinks it is a coincidence because it is usually tried on teens, who tend to outgrow NS anyway.

They would really like to get her off prednisone, but we talked some more.  The 2nd relapse this summer we thought we could attribute to her receiving vaccinations so shortly after a relapse, and the 3rd relapse happened at the same time she experienced a cold.  So they figured they would go ahead and give her one more shot at getting  off the prednisone on her own.

In the mean time they are trying to decide whether to be concerned about her grown, if the prednisone is inhibiting it.  As you can see from the picture, she is a bit shorter than her sister, who is 2 years younger than her (yes, that causes a bit of turmoil for her and strife between them).  However, we think she is just on a slower growth pattern.  Her older brother was short until his later teens, and she has several cousins who are 2 years apart in age but the same height.  Ada continues to have a steady growth curve, and her height is not abnormal for her age, she is just on the shorter end, and her sister is on the taller end for her age (and also experiencing a growth spurt of 6 inches in 18 mo!)

The conclusion is that a dexoscan was scheduled (bone density scan) and we are suppose to make sure she gets plenty of calcium.  Since she isn't a big milk drinker, I have her take a Tums daily.  I wish I had taken pictures of the bone scan.  She had been worried about it, but it was super easy and completely painless.  She just lay on a table while the scanner rotated around her, but it wasn't a closed tube like an MRI, it was a curved arm that moved up and down over her body and around the sides.  She just had to lay still while the arm was moving.  Not too much of a trial, but if she had to do it when she was a toddler it would have been more of a challenge.

We were so excited that this week, the first of January, made 5 months medication and protein free.  Unfortunately, the other morning she was looking a little puffy and a pee test showed she was spilling again at a 2+.  Since the entire family are down with colds, we are going to just watch and see if the protein improves after she gets better.  It doesn't usually work that way (but then illness isn't usually her trigger, we don't know what is) but it has once  before, so we will be hopeful.

Well, that's our update.  Last year wasn't bad, and we will hope for better this next year.  Wishing everyone else a happy and protein free New Year!