Another great NS Blog

I'm always on the lookout for information about Nephrotic Syndrome (NS) and especially sites that share the down to earth experiences. Here is a great site if you want so see what another child's experience has been.

http://kid-neydisease.blogspot.com/

1 week free

As of Monday we have been 1 week without any meds and Ada continues to be protein free.

Holding on Her Own

Ada took her last Cytoxan and prednisone 3 days ago on Saturday. (She is still taking prilosec for a couple more weeks to make sure her stomach recovers from the prednisone.)

As of today she is testing negative for proteins. Hurray!! Here's hoping that Cytoxan did the trick. The Neph said to bring her back in 6 mo for a followup. Hopefully we won't see him before that.

We are suppose to check for proteins once a week. We will probably check more often than that - at least for a while. But even if the proteins are up, as long as it doesn't stay up for more than a week we don't need to worry.

We'll keep you posted.

Oct Neph Visit

This is the end of the Cytoxan treatment. Ada has doen very well on it and we have her down to a maintenance dose of prednisone (5mg every other day), Saterday she will take her last dose of both medications, and if all goes well she will stay protien free. She will go back for a check up in 6 mo. because she has been on the Cytoxan.

Just for fun we thought we would take you along on a visit. I appologize for the fashion diva - we have to pick our battles :-)

First thing they ask for is a urine sample. So far we have been able to provide 1, and that was captured at home.

Next comes the weigh in. Check out this scale. Other scales have had hand rails. Keeps the kids from holding onto something and getting a poor reading.

Height Check - This is to make sure she is still growing as prednisone tends to stunt growth.

Blood Pressure Check. Ada never gets a good reading on this machine, because that would require her to HOLD STILL!

A Medical assistant or PA comes into the exam room and gives her a once over and reviews medical history. Then Ada gets a chance to double check everything.

Finally the Nephrologist comes in and does his exam. He is pretty quick and then gives us instructions. Always on a best case scenario. The first visit he said, "Nice to meet you. If all goes well we will never see you again."

Stomach Problem identified

- warning: frank discussion of bodily functions -

I called Ada's NP and we talked about just what sypmtoms she was experiencing, how long etc. She asked if Ada had been having regular bowel movements. (OK, I need to start paying attention to that because medical people are always asking about that :-))

Anyway, I didn't think she had been real regular, but wasn't sure. Her NP suggested that she may be having bowel problems which could include painful gas. (been there, done that, not fun). It seemed to be a good fit with what may be going on - warm baths and back rubs being something that helps and all. She suggested trying miralax to see if that helped, and if Ada wasn't feeling better in the morning to go visit the GP to see if we might be missing something.

So we asked Ada if she had been having normal poops. She said yes, except the other day she had bumpy rock poops. OK, that answers that. At the NP's direction we gave her a dose of miralax (warnings all over the bottle not to use if you have kidney problems without Dr's direction - so "don't try this at home" without Dr approval) and it worked. She slept through the night in her own bed and is feeling much better today.

Don't know if there is any connection between this and the NS, the medications, or if this was just another thing life throws at you and she grabbed it. But glad we have the help we need to get through all this.

Just not feeling well

For the last two days Ada has not been feeling well. She still has her cold with stuffy nose etc, but in the morning and evening she complains of her stomach hurting and feeling like she needs to throw up, but never does. She can get distracted from how she is feeling during the day and will go play with friends for a while, then comes in and lays around the house curled up in a ball, changing positions frequently. She finds most comfort in taking warm baths, and in having someone rub her back, or hanging on me.

She isn't puffy or spilling any proteins, I am just not sure what is up. We have an appt scheduled with the Neph in a week. I guess I will call the clinic and see if she should go in and have her Primary Care Doctor just give her a look over for any obvious problems.

Currently she is on 10mg prednisone every other day, and is also taking the cytoxan (down to the last couple weeks) and previcid (or whatever the insurance is allowing).

It's a Cold

How do I know she has a cold instead of just allergies? She blew in my face and now baby and I know exactly what she is going through :-) It doesn't seem to be knocking her down too much. She doesn't sleep, and complains of her stomach hurting, but mostly she just hangs on me and goes through boxes of tissue. Proteins are staying at trace/negative. So hopefully she will knock this cold before she goes off the Cytoxan and will be able to ween off the prednisone without any trouble.

New Milestone

Actually down to 10mg prednisone. This is the lowest she has ever been on, thanks to the Cytoxan. She currently has a cold, which I think has caused her to have some trace protein readings (which is as good as negative in following NS), but it doesn't seem to be slowing her down too much so hopefully a little extra fluids and homemade soups will have her feeling back to normal soon.

She has been complaining again about stomach aches. Not sure if it is due to the cold/virus she is fighting, or her stomach just being sensitive to the medications. Not too concerned at this point, but I put a call in to the center just to let them know what is going on. Only a few more weeks of the Cytoxan treatment.

Big sister had to have some blood work done Monday. Ada felt pretty brave and important showing her the ropes at the lab :-)