Monday, June 24, 2013

Up, Down, like a merry-go-round round

Ada went off prednisone the first week of June, just in time for girls camp.  She had a whole 2 weeks off and then she got sick - something along the lines of strep, but not strep.  Anyway, she started spilling protein and swelling up, so I called the University today and they said back on prednisone she goes, just in time for scout camp next week.

In all this I am so grateful that the biggest disruption in her life is the need to watch her sodium intake and remember to take prednisone during the EOD schedule.  Otherwise, she is able to go about life as normal, playing, learning, and growing as any child should.

Monday, May 20, 2013

Relapse, 2nd go

So Ada didn't go back down on her own and I called the clinic.  They had us go to the local hospital for a urine and blood culture.  We received a call within a couple of hours verifying that she had actually relapsed and we would need to start over on the treatment.  We were to make sure she was protein free for 5 days before beginning the taper process.  So she was back at full strength daily for two weeks, and now we are tapering again.  Hopefully we will make it all the way through and have a successful weaning process.

Oh well, at least she is having a great time with swimming lessons, playing with friends, and learning.  It could be so much worse, and should eventually fade away into a memory.

Wednesday, April 17, 2013

Vaccination bump

I took Ada to the Dr the other day for a routine physical and she was given a Tdap booster.  Today her proteins bumped up to a 2.  I called the clinic and they will have us stay on the every-other-day until her proteins are back down for a week.

In hind sight - Would I not do the vaccination?  No, but I probably would have waited until she had been in remission for a week or so - I think?

Monday, April 15, 2013

Dr Visit and Consult

It had been a while, so we made a run down to the Hospital for a face-to-face visit with the Dr.

We were lucky to get the first visit of the day, so the office was running on time!

The Dr was pleased that she is responding to the prednisone and her growth is steady.  He wants her getting plenty of dairy for calcium.  She is suppose to outgrow these relapses, but she will probably relapse again.  As long as we are catching the relapses and she is responding to the prednisone we don't really need to be concerned.  We are only looking at stronger treatment if she reaches the point where she either doesn't respond or is dependent on the prednisone.  We are OK if she gets 4 months or more off of prednisone.

Wednesday, March 6, 2013

4 months is better than 2 months - right?

Well, I had been really optimistic and believed that Ada would make it at least a year without spilling proteins again.  But thankfully she had 4 months protein and prednisone free.

Have notified the clinic.  Will watch her protein level daily (it is currently at a 3+) and report back next week.

I was so optimistic that I had not been riding Ada to get those pee tests done each week, so who knows how long she has been leaking.  This morning the tell tell signs of facial edema were obvious and I demanded a pee test, refusing to let her shrug it off (I can't blame her for being tired of the routine).  The stick was dark.

Oh well, praying for the best and realizing she has good medical care we are thankful for.

Cheers!

Wednesday, January 2, 2013

State of the Ada address

We are coming up on the end of 5 years with NS.  Ada is doing pretty well.  She had a relapse earlier this year, but has been prednisone and protein free since early November.  She is growing into a delightful young woman.

We have not noticed any significant side effects from the treatments she has been under.  She is shorter than many of her friends, and even her younger sister, but we do not know if that is a result of the prednisone or the genes she happened to inherit. She has cousins who are shorter than their younger siblings, and while she is short, she is not disproportionate.

Ada does not allow NS to slow her down.  She is active with her friends, learning to swim, and becoming a fabulous little pianist.  We are hoping this will be the year she so goes protein and prednisone free.  We hope you will be protein and prednisone free as well.  But if not, keep your chin up and hang in there, hopefully that day is coming.