Nephrotic Syndrome - Our new friend

I figure it is better to get to know and make friends with this new condition than spend all of our time fighting and struggling with it.

There are a couple of links to the right that can give you more detailed information on Nephrotic Syndrome, if you are interested. From our study our understanding is that this is a lot like an auto-immune disease. It is more a description and management of symptoms than it is a specific disease. In Ada's case they don't know what caused it. Usually some viral or bacterial infection trips the immune system, which then for some reason upsets the kidneys which quit functioning the way they are suppose to.

She isn't in Kidney Failure, but they aren't working right either. They are leaking the protiens into her urine, which they are suppose to keep in the blood stream, and because the protien isn't in the blood stream then her blood isn't retaining the water and the water is leaking into the area between her cells. Causing the swelling.

The swelling is more pronounced in her face in the morning and her belly and feet at night (gravity works). Normally a trim child, she has developed a "buddah belly" and "Auntie Ankles". To manage the swelling she has been placed on a severe sodium restriction, and may possibly need to be placed on a fluid restriction as well if the swelling doesn't go down.

While the swelling (edema) is the visible symptom, the problem is the protien in the kidneys. We have purchsed (after a great deal of looking around) dip sticks that detect the level of protein in her urine. They should indicate trace or negative for protein, but right now she is over 2000 mg of protein. So she tests that each morning and hopefully we will start to see the swelling and proteins go down; but it may 3+ weeks we have been told.

She has been placed on prednisone, the most common drug that seems to work 90% of the time. It will cause problems of it's own, but they tend to go away once she is off. Assuming she responds to the medication then we will just need to watch for a relapse. It may be triggered by an illness, or some hafve suggested allergies may also trigger a relapse.

In a text book case, the medicine works, there are usually relapses, but since you can catch them sooner then the child responds to treatment quicker. The relapses should become fewer and farther between until she outgrows it prior to adulthood.

So the Outlook is pretty good, but it will be a chronic condition which will need to be managed for a while. Not real common, it has been hard to find much information, but some is out there, mostly in England and Canada. As we learn more it is easier to know what to expect and to look forward to her having a normal childhood.