Can't keep 'em down

Just thought I would post an update.

To date Ada has not relapsed since she finished her cytoxan course in October. She has lost all retained fluid and does not spill proteins (we still test about every other week and during illness).

Her level of activity is as high as it ever was, but not as spastic as she was on prednisone.

Just for proof of how little her life is affected, this was her last week on a family outing.She was determined to make it to the top, and she did - barefoot and all. (Maybe she was right at home in the harness, since she spent her first 6 months of life in a harness due to a congenital hip disorder) Life is good.

Latest Nephrologist Visit

We saw the Nephrologist and his team last week. Ada bounced in and was in a room before I finished filling out the paperwork again. Her Nurse Practitioner came in and interviewed her, Ada gave her a picture she had drawn, and chatted.

The nephrologist came in and was happy to hear that she has been off all meds for 6 mo. without a relapse. He said hopefully this is over but, not to be disappointed if we do have a relapse. The good news is that if we relapse she should respond better to the steroid treatment than she did before.

So Sorry this site has gotten boring. But we are glad. Hopefully if you are here because you are facing nephrotic syndrome you won't be too far away from finding life boring again also.

Cruise Control

It's hard to believe, but in a couple of weeks we will reach our 6 month mark. 6 months since she went off cytoxan, 6 months since she has taken any prednisone, and 6 months without her kidneys spilling proteins. All this in spite of colds and allergies (the usual suspected triggers.) We have much to be greatful for.

Cold passes without incident

Navigated a cold without relapse. Yeah!

Boring is Good

Thanks for dropping in and checking on us. Ada is doing her pee tests once a week, more or less. We sometimes forget in the morning and then don't get around to it until the next day or two. We maintain a lower sodium menu, but not anything like when she was leaking proteins. She is now almost 3 months protein free without the aid of any medication, and the longer she is in remission the less chance she will relapse, which makes her site a little boring - sorry. But sometimes boring is good.

Does that mean life around here is boring? No Way, not with Ada. She doesn't need prednisone to make her active. She was always one of the kids who got wound up on cold medicine rather than falling asleep. She is having a great time learning and improving her reading and writing. She is a great little scientist, and with the new microscope we got she can now check out her own cells (cool huh)

So with this new year we are hoping for the best for everyone out there. If you are currently on prednisone, we hope you successfully ween off. If you are on a more intensive therapy, we hope it is successful and you will soon be protein and prednisone free. If you are looking at a biopsy, we hope you find the answers you need. And if you are currently in remission, we hope you stay in remission for a long, long time. And if things just are not going well at all, we wish you the strength and courage to carry you through to better times and pray your Drs will be guided to give you the proper care you need.

Love from Ada and a Happy 2009. If all goes well you probably won't get another post here for another month. Thanks for dropping in and checking up on us.

2 months free and still counting

Today marks 2 months being prednisone and protien free. The cytoxan is doing its job.

That first picture is from her last relapse in Aug. The other is her current school pic from Nov. She is certainly doing well. Thank you for all the extra prayers in her behalf. Hopefully she won't relapse, but we'll keep you posted either way.

Mark One Month

Today makes a full month that Ada has been protein free without the aid of prednisone or other medications.

Sending our heart felt prayers to those who are in the middle of a relapse.

Kidneys Holding

In spite of the 'flu' yesterday Ada's kidneys are holding in there and protein is at trace. That's a good sign. Thanks for prayers.

In all honesty, we expect there will be an occational relaps, but statistically she should respond better to the prednisone now that she has had a cytoxan course. But it would be great if she never had to deal with this again.

For now our instructions are to test for protein once a week, daily if she is spilling proteins, swelling, or sick. But even then we don't need to worry unless she goes beyond a week with higher protein levels.

1st Test

Ada has been doing great, no protein spills. Today at breakfast she vomited, likely a stomach bug that is going around and has kept her from play dates with friends (hopefully of the 24 hr variety). So now we'll see just how effective the cytoxan is. Wish her luck.

Kids are Kids

The great thing about NS, is although it can be a frustrating disease, as long as it is being treated it doesn't keep kids from being kids.

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 :-)

Behind the Scenes

Monday when we went to the lab I took all six kids (I know, crazy). But after they were done with the blood draw this WONDERFUL technician showed the kids how she prepares the slides to do a blood count. She told them she would have loved to take them back to look through a microscope with her except there were too many infectious diseases in the back.

Check out the video of the slide prep!

Oops

When I was recording Ada's protein and meds today I realized that we missed yesterday's prednisone. We got the other meds taken, but she usually takes the pred with lunch and we apparently missed it. Since we are on every other day she took it today when we got home from the MD visit.

Something that has helped us keep track of whether or not she has taken her meds is one of those weekly pill packets that your grandparents use to set out their meds each day. It's nice because if I can't tell if I didn't get her meds or if I just failed to record them, we can look in 5h3 weekly med dispenser to see if she has taken that days meds.