The frequent relapser

I'm sorry I haven't been posting more regularly.  I've been picking my brain remember what questions we had when our son was diagnosed 2 weeks before his 14tg birthday with this childhood disease that many kids his age were growing out of. 

Any kind of stress seemed to trigger his kidneys to start spilling protein.  Running in PE a particularly busy day at school,  hanging out with his friends, performing in Choir which he loved..

We asked can food cause it?  Probably not? Colds/flu allergies yes they can,  routine immunizations are not recommended when either spilling protein or on steroids to control them.

The last few summers we've realized hot humid weather makes him I'll too.

It seems like for the last 2 years  he's in a vicious loop of flaring up a month or so after completely tapering off the steriods so he's been on them constantly for a long time and long term prednisone use is bad,  very bad.

So at 20 years of age his doctors want him to  go on cyclophoshamide a chemo treatment that is supposed to stop the current flare and prevent future flares.  For some patients the relief lasts years.  It just a scary treatment.

Spilt any protein lately?

Hello and welcome to Spilling Protein. No, this isn't a blog about protein drinks. It's about a condition called nephrotic syndrome.

I am still setting up this blog but I recall the most pressing question we had after my son was diagnosed at age 13 years of age was where could we purchase dip sticks to test his urine for protein. His pediatric nephrologist Dr Elizabeth Ingulli wanted him to test his urine every single day. More on why later.

When he was diagnosed 7 years ago it was possible to purchase a regent test strips in local medical supply stores. But they were so expensive, over $70 for a 100 count package. We found that testing once a day they went bad before he ran out because we kept them in the bathroom where it gets hot and humid.

It grew increasingly difficult to walk into a medical supply store and buy them, so we started looking online. Surprisingly the same test strips that cost $70 in a local store cost less than $30 online including shipping. I've gotten them as low as $12 for a package of 100.

You can find regent test strips that only have protein and blood tests on them but you might as well get the regular ones that have 10 or 11 tests per stripe. If any of the other tests on the strip change color you should let your doctor know.

Here's just a couple examples:
URS-10, URINE REAGENT STRIPS FOR URINALYSIS on Amazon
Rapid Response Urine Dipstick 10 Parameter (10SG) Urinalysis Reagent Test Strips on Ebay

I hope this is enough to at least get you started.