2011 update

Thanksgiving Day we completed the weaning process off of prednisone. 2 weeks now and we are protein free. I think the Dr made a good call to treat her as if we were starting from the beginning. Do I expect her to relapse? Honestly, yes, I think it will happen again, but I'm hoping we'll see a good year before it does happen.

Again, the expectation is that while she will relapse they will become less and less frequent until they don't happen anymore. So while a relapse is a set-back, it doesn't mean we aren't making progress.

Update

The adventure continues. . .

We were sailing through things pretty good. She weened off the prenesone and was protein free again. We were now testing weekly and I was glad because we were headed to a weeklong woodbadge and family camp and I didn't want to mess with pee sticks and dietary concerns.

So what happened :-)

A couple week before we headed to camp she swelled up like the pillsbury dough boy. A protein test showed she was up at a 3+. We tracked it for a week and called before the weekend hit. Back on prednisone. I was worried she wasn't going to come down because it was taking so long, but she did, and with severe sodium restrictions the swelling went away.

So - now what to do about camp? We packed up her meds, plenty of fresh fruits and low sodium snacks, got a copy of the camp menu so we knew ahead of time where restrictions were needed, and took off to the camp.

As far as diet was concerned, since the swelling was gone I just had her use prudence and not gorge herself on chips and hot dogs - had her load up on the fruits and veggies instead, but gave her permission to enjoy what was offered.

As far as activity was concerned - it didn't slow her down a bit. She went hiking and sailing, she played games and made crafts. She made new friends and had a wonderful time.

NS is a pain - well, actually there isn't a lot of pain involved as long as we are on top of the edema, so it's more of a nuisance, and we are still hoping remission will return, but in the mean time life is going on and she is a very happy, well adjusted child.

Although we have not finished the weaning process her proteins have begun to elevate again. The are holding at a 2+, which makes me suspect that when she weans off she will fully relapse. But for now we are not increasing the med and are just watching to see what happens.

Lots of prayers and love and fasting are appreciated. They keep assuring us that eventually this will go away on its own, and until then we just need to manage it. So we will keep managing. I'll see if I can get a couple of pictures of her posted so you can see just what an active happy child she is 4 years later.

well - it's been a while. Ada went a year and a half without any problems, then last summer she had a relapse. She did a run of prednisone and was OK for another 4 months. At the first of the year she did another course of prednisone, but shortly after she went off she has relapsed again.

She is going back on prednisone, a higher dose this time, with a quicker taper. We'll cross our fingers that it will hold for a while so we don't have to talk about more of the intense auto-immune drugs.

One other thing - she has not had any illness to trigger this, but she is congested from allergies. We are going to aggressively treat her allergies and see if that will help keep her from relapsing again.