Late July 2007--I brought Angelina, Anna and Allie in for their yearly checkup at the ped.  Everything went well, they all seemed very healthy.  I got their scripts for their annual bloodwork (to check cholesterol, etc as last year their cholesterol was a tad elevated).  No need to fast, so off we went to the lab the next day.  I get a call as soon as the ped got the lab results, Allie's cholesterol is 446!!  I went back to the dr to get a new lab slip, this time she had to fast and get a urinalysis.  We went that following saturday.

 I got a phone call that following monday, her cholesterol was still in the 400's and there was blood and protein in her urine.  That following week, we had an appt with a nephrologist an hour away from home.  At that first appt, with no doubt, Dr Singh diagnosed her with nephrotic syndrome.  This is a kidney disease that, without treatment, within a couple weeks from the onset can lead to kidney failure.  Luckily, we weren't at that point. 

 He started her on prednisone.  Normally, children with nephrotic syndrome go into remission with the steroid treatment.  They can relapse, but steroids will take care of that and they outgrow this by their teen years.  That diagnosis didn't seem that bad, we could deal with that.  I mean, things could be worse.

 
The normal treatment is 6 weeks on the steroids, than 6 weeks to wean off.  By 6 weeks, there was little change in her condition.  During that time, we ended up in the er of a hospital an hour and a half away because Allie was filling with fluid.  She was put on fluid restriction and a diuretic.  At this point, she was also put on vasotec, a high blood pressure med, because her pressures were elevated and it was known to reduce urine protein.  She was also constipated.  I had to give her laxatives so she would go.

The following week at the drs, he figured she was steroid resistant, so he put her on a drug called cyclophosphamide (cytoxan), which is a chemo drug also approved by the fda to treat nephrotic syndrome.  At this point, I had to pull her out of school, this is an immunosuppressant med and if she got sick, she could land in the hospital.

After talking to the principal, her actual teacher agreed to come to the house for homeschooling.  She would come 3 days a week for 1hr and 40mins.  Allie was thrilled, as was I.

Mrs Z came on that first Monday.  Everything went well.  I consider her a dear friend, so after Allie's session, she ran to the pharmacy and picked up the albustix for me, which I dip in her urine to test protein levels.

That night, her proteins tested at 4+.  The same the next morning, so I called the dr.  I had to make quick arrangements for the kids, enlist my family's help because she needed to get to the hospital quickly for high doses of iv steroids.  They also did a kidney biopsy to find out the exact problem, as she was still not responding to the meds.

 
We were there for 3 days,and came home.  The dr called me that following week to tell me the results were in.  My daughter has what's called Focal Segmental Glomulerosclerosis (FSGS).  It was the diagnosis I was praying it wasn't.  Basically, she has a large buildup of scar tissue on the filters of her kidneys.  This prevents the filters from working properly.  THe prognosis is renal failure...it could be in weeks, months or years.  There is no telling when it will happen, but it will. 

She started a new med called prograf.  Her levels on that are good, but they need to be a little higher in order to get off the prednisone.  As of right now, she still has protein in her urine.  If the proteins are not down to 0 by next friday (a week from tomorrow), than it looks like we'll be in the hospital for 3 days out of every month for high doses of IV steroids.

 
Her kidney function is showing as good right now, so that's a relief.  It's a waiting game.  We seem to be going through cycles of constipation, fluid retention, high proteins, etc.  Every few weeks we go through this.  It's so hard watching my child go through the physical things of this disease, but thankfully she is in no pain.

 
So, that's our story...where we go from here, I'm not sure.  I'm doing all I can to keep my baby healthy.  I had to change our entire lifestyle for her.  We eat differently, I clean differently, I am more aware of germs and am more militant about handwashing than before.