Are we having a Relapse????

I need someone to tell me that I'm not crazy!!! My daughter was diagnosed in January 2008 with Minimal Change Nephrotic Syndrome and has been on prednisone ever since. We began testing her urine daily in February following our follow-up appointment when they told us that her urine was negative. She tested negative for the first month but then in mid March she ran a low grade fever and began spilling small amounts of protein (never more than +1). Since then she hasn't tested negative one day. Most days she tests trace to +1. On Thursday of last week she tested +2, Friday she was +1, Saturday she was +1, Sunday she was +2, Monday morning she tested Trace but then I took it again Monday evening and it was a +3. This morning I tested her and she was a +2. Does this mean we are headed for a relapse. She has had NO problems with the steroid until she ran the fever and since then it has seemed to be down hill. My doctor told me not to worry until she was +2 to +3 for 3 consecutive days but I am still freaking out.......I don't want her to relapse!!!!! She isn't exhibiting any symptoms such as swelling or lack of appetite or being tired. She is running around at full speed. Also, I read somewhere that excercise can actually cause them to spill protein......is that why we are supposed to test her in the morning??? I notice that on the day she is really physically active that she usually is spilling protein when I test her.........SOMEONE TELL ME THAT I AM NOT CRAZY, BECAUSE I REALLY FEEL LIKE I AM!!!!!!!

By kshearer
Posted April 1, 2008 at 5:26 pm

You are not crazy...I have noticed that my little girl spills a little more protein if she if VERY active. We don't get excited if she is only at a trace or +1. In fact I don't really get too concerned unless we are spilling larger amounts for more than one day. Hang it there. A good doctor friend of mine once told me Minimal Change is not a sprint but rather a marathon that can some times last a very long time. I will keep you in my prayers, and hope you race is not too long.

By AmosB
Posted April 1, 2008 at 6:59 pm

We all spill more protein as the day goes on. That's why it is best to test in the morning, the bladder is full from the night and is a better indicator of protein leakage. When you are sick there is a foreign agent in your body. If your kidney's are not working 100% they have a harder time keeping the protein in. Do you remember getting tested when you were pregnant? I never really noticed that they were testing for protein along with glucose. One time I was a 4+ in the afternoon. They asked me to test (using my daughter's sticks, lucky me) and I was a 1 in the morning.These albustix can make you crazy just keep in mind that it is 2+-3+ for 3 consecutive days!!! Not that it will make you sleep any better at night but we have kept track for years and can see when she is sick with an increase in her protein spillage.

I am not sure I made you feel any better but do know that in ALOT of households in the morning there are parents holding their breaths and hoping for a yellow square (negative, or a 1). My daughter would even compare it on the bottle....so fun!!

Good luck,
A

By duker
Posted April 1, 2008 at 8:09 pm

I am one of those parents who holds their breath and prays hard every single time I test her... I know the feeling all too well.

hang in there. it is mind blowing, but you are not alone- we are all doing the same thing. If she does end up relapsing, it is actually common. it does not mean that she will have to go down all the other toxic drugs. she can still grow out of it.

I went to NIH today to donate blood from my daughter for some testing to help future patients. it broke my heart that most likely her info will not help her, but it could help other families in the future. we told her (age 6) that she was doing this to help other children with her condition and she replied "thats good, I dont want anyone else to go through this". made me choke up, but it is the least we can do.

best to all

By MariekeV
Posted April 2, 2008 at 3:38 am

Hi to all mums that think that they get crazy!

I am the same...always before sticking the anxiety each day of the result. My son always went in 4 days to 4+ there were no improvements as you have. Take it easy your lucky that she sometimes has a better stick and sometimes not. Hold tight,

MariekeV

By jane1
Posted April 2, 2008 at 7:08 am

Hi

We were told our daughter had ns on Mother's Day of 07. It is now going on a year and it is still a roller coaster. One day it is good and the very next day down hill we go! I think that is what troubles me so much. How it can change so quickly! There has never been any length of time with a negative protein. She is now considered steriod dependant and is on cyclophoshamide with the steroids to help ween off the steriods. This is the longest time she has not had protein in her urine not even trace, but she is still on the meds. It is a horriable feeling to see your little one go from a happy care free toddler to a moon face (from the steriods), tired, stomach hurts all the time toddler. You feel so helpless!!!! Hang in there. It is not easy. PLEASE write if you have any questions or you just want to vent!

Thanks

H

By kbarber2007
Posted April 2, 2008 at 8:28 am

AHHHHHHHH!!! She tested +3 again this morning. We only have one more day until we can offically say she is relapsing. The thing that kills me about this condition is the thousands of "what if's". I keep running scenerio after scenerio in my head.......what if I am testing her wrong....what if the sticks are no good....what if she has an infection.....what if we have to go through this for the next 10 years......what if this episode is a fluke becuase she is showing no other signs of a relapse, no swelling, no belly pain, nothing.....
I am driving my poor husband crazy as well! He keeps telling me not to worry so much but I keep telling him that it is not physically possible. I guess it's the "mother bear" instinct but I can't help worrying myself to death about it. He has really been my rock through this....he tells me when I am being crazy.....exactly when I need to hear it!!!! He has "talked me off the ledge" so many times in the past couple of weeks it is unbelievable.
Thanks to everyone who posted replys. (and thanks for telling me I'm not crazy) It is really nice to know that there are other moms and dads who are going through the same thing my husband and I are. We are going to call Emma's doctor this morning and get the game plan for what we need to do if she pees a +3 tomorrow. I will keep you posted.

By AmosB
Posted April 2, 2008 at 11:52 am

Your not crazy....just stressed to the MAX!!!! Keep your chin up, focus on your support (your husband) and let it out. We all feel, have felt or are feeling like we are standing on the edge of the diving board knowing that the jump off is scary but not knowing when we will get pushed off...
Much luck, thinking of you ALL day in especially in the morning tomorrow,
A

By Crowley
Posted April 5, 2008 at 10:59 pm

You are not crazy but you are right about this syndrome making the caregivers feel crazy. Hang in there and call on the rest of us when you need to.
Good luck.
Shannon

By jane1
Posted April 6, 2008 at 8:38 am

hi

like i said i have been dealing with this for all most a year now and there are days i just sit and cry because you feel so helpless. you drive yourself nuts thinking is it the food you feed her or is your house or dogs that are doing it. you wonder how quick it can change from one day to the next even when she is not sick with something else. it is something that does not go away for months or weeks it is here everyday! and that is what is so HARD!!!!! I try to look at the positvies to out way the negatives and take one day as it comes and not think about what the future may hold if this does not go away. Hang in there and you are not CRAZY to feel the way you do. this has change our family in ways for good and bad just take one day at a time!!!!!!!!!!

By HH
Posted June 20, 2008 at 1:07 pm

We can all relate this is such a frustrating disease. I spent all winter keeping my kids out of playgroups quitting the gym so they weren't in the childcare room (gained 10 lbs, stress and inactivity will do that). We cheered when flu season was over and thought we would make it through the summer with no relapse only to have Jordan start to spill unexpectadly last week, he doesn't even have a cold or anything. Now my husband says oops you know we went swimming in the creek the day before he spilled... AAARRRGG we can't keep our kids from being kids, we have to live in our houses, go to school, work, see family members and somehow deal with this illness as well. It isn't much fun but we will all get through it.

By cschorr
Posted July 23, 2008 at 9:35 am

I have been going through the same thing for the past 3 years-my daughter Kylie has tested +3 for the past two days- she just got off of her prednisone last month- she had a full relapse Dec. 07- she was diagnosed with Idiopathic NS- It is so much stress and a roller coaster- It seems that when Kylie gets strep throat or scarlet fever- she relapses- she has a Dr. apt today to test for scarlet fever- I am supposed call the Neph Dr. after 3 days of 3+- but it gets so frustrating because she will go up to 3+ and then down and then up- and then we go in for an apt. and they say there is no protein- but then 2 days later she is +3- ugh....I feel your frustration- Kylie is not on any meds now- but I know in my heart that a relapse is coming again soon- Has anyone had experience with getting sick (the strep virus) and relapsing?

Christi

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