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.
Monday, November 17, 2008
Friday, November 7, 2008
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.
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.
Thursday, November 6, 2008
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.
Saturday, November 1, 2008
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.
Friday, October 31, 2008
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/
http://kid-neydisease.blogspot.com/
Tuesday, October 28, 2008
Tuesday, October 21, 2008
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.
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.
Thursday, October 16, 2008
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."
Friday, October 10, 2008
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.
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.
Thursday, October 9, 2008
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).
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).
Sunday, October 5, 2008
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.
Wednesday, October 1, 2008
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 :-)
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 :-)
Wednesday, September 24, 2008
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!
Friday, September 19, 2008
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.
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.
Neph Visit
Had our visit today. Ada actually got them a pee sample today, Yeah! And since Aunt C had an appointment with her Docs that same day she met up with us to go to our appointment.
They ran the basic vitals, weight, BP, and listened to her body. Since it was just before lunch they heard plenty from her stomach :-)
The Nurse Practitioner told us that Ada's white blood cell count was down, but not enough to be concerned with at this point, and that they would give us a call if it did drop too much. Otherwise it looked like she was doing well and we could come back in a month.
The Neph dropped in to take a quick look at Ada and then we were on our way.
They ran the basic vitals, weight, BP, and listened to her body. Since it was just before lunch they heard plenty from her stomach :-)
The Nurse Practitioner told us that Ada's white blood cell count was down, but not enough to be concerned with at this point, and that they would give us a call if it did drop too much. Otherwise it looked like she was doing well and we could come back in a month.
The Neph dropped in to take a quick look at Ada and then we were on our way.
Thursday, September 18, 2008
Wednesday, September 17, 2008
Bad Urine Dip?
Todays dip was a 1+. I'm hoping it was just a bad sample since it took me till later in the day to get a read off of it. Or maybe something else has caused a temporary bump. We won't panic, just watching a little closer and hoping for a more 'yellow' stick tomorrow. We'll let you know.
Saturday, September 13, 2008
Finished 30's
Yeah! We have completed the course of 30mg pred (every other day) without a rise in protein. Today is a day off, and then we start up at 25 mg pred. We haven't been there in a while, so this is good news. Hopefully, with the help of the cytoxan, we can keep on stepping down.
We sure hope all our other NS friends our there are doing well and responding to meds and avoiding relapses. We keep you in our prayers and think of you.
We sure hope all our other NS friends our there are doing well and responding to meds and avoiding relapses. We keep you in our prayers and think of you.
Wednesday, September 10, 2008
6 months
We have now been "friends" with NS for 6 months. It has been an interesting journey, not entirely a bad one.
We have learned a lot, about NS, kidneys, and ourselves as individuals.
Ada has been unable to get steroid free, so she is currently doing a Cytoxan course (8 week). Once her proteins dropped she has not even had a trace of protein. We are half way through the course this week. She has not had any side-effect problems from the cytoxan that we are aware of.
We are excited at the prospect of gettting her off the prednisone. She has gained a little weight from the prednisone, and her face has the puffy tell tell signs, but otherwise she is healthy and happy. She will have a check in with the Nephrologist next week to confirm that all is going well.
It was interesting to learn that our new family practitioner did an extensive study of the side effects of cytoxan as part of his medical school. He asks about her any time someone from the family comes in.
Unexpected Silver Linings
The saying is that "Every Dark Cloud has a Silver Lining". Would you believe it, we keep finding additional silver linings that make the cloud appear less dark?
A few we have already discovered include; a wonderful community of supportive people, increased faith, increased knowledge, and more.
Another we just discovered is increased health?!? We have to do a health evaluation every year at Dad's work, which determines how much we pay for medical insurance. We are rated on several health indicators based on BMI and blood labs. Points are allocated for each item with 100 points being given for results in the "top" of each catagory.
We usually come in right around 90 pts. Dad was really stressing the tests this year because they have tightened down each financial bracket and he was worried we would end up paying more. Lo and behold when we got his results back we were shocked to see that he had received the maximum 100 points.
The only thing we can atribute this to is a change in diet, the result of Ada's "low sodium" requirements. To go Low Sodium you really have to cut out most processed foods, which also reduces fats, preservatives, and other dietary "no no's". I didn't think it had made that much difference, but appearantly it does.
P.S. I got a 100 pts too, but only because of a Dr waver. Having my blood labs done 3 days post-partum my lab results were way out of wack, and of course my BMI was way off too :-)
A few we have already discovered include; a wonderful community of supportive people, increased faith, increased knowledge, and more.
Another we just discovered is increased health?!? We have to do a health evaluation every year at Dad's work, which determines how much we pay for medical insurance. We are rated on several health indicators based on BMI and blood labs. Points are allocated for each item with 100 points being given for results in the "top" of each catagory.
We usually come in right around 90 pts. Dad was really stressing the tests this year because they have tightened down each financial bracket and he was worried we would end up paying more. Lo and behold when we got his results back we were shocked to see that he had received the maximum 100 points.
The only thing we can atribute this to is a change in diet, the result of Ada's "low sodium" requirements. To go Low Sodium you really have to cut out most processed foods, which also reduces fats, preservatives, and other dietary "no no's". I didn't think it had made that much difference, but appearantly it does.
P.S. I got a 100 pts too, but only because of a Dr waver. Having my blood labs done 3 days post-partum my lab results were way out of wack, and of course my BMI was way off too :-)
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