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Nephrotic Syndrome
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cookozzynut posted:
My daughter,13 years old, was diagnosed this May with Nephrotic Syndrome. She never had any problems then all the sudden, her ankle swelled up on day. After ER visit, a doppler to rule out blood clot, a urine specimen was done. She is releasing to much protein through her kidney. She is on Prednisone, Cyclosporine, Lacets, and Lisiprol. I am afraid all the meds may be doing more harm than good.
She has constant swelling in her ankles, acne,stomach upset, and has had 1 week in the hospital after she gain 33 lbs. of fluid in 3 days. She was given albumin and lost all but 5 lbs. Anyone with any advise or similar experiences??? This is all new to me and I am worried about my daughter.
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john-skpt responded:
It's hard to guess from a distance. But the balance of serum albumin has some rather narrow limits, and besides protein and other tissue syntheses, it is critical for maintaining the volume of fluid in the blood stream. When it is too low, the body tries to compensate by holding in extra water.

33 pounds of water is just an immense amount:think of it as about 4 gallons.

Lasix/furosemide should get the fluid off eventually. The trick is to find out exactly how much protein is going out in the urine every 24 hours. You have to get some sort of balance where enough albumin stays in the blood stream and isn't all filtering out in urine.

Considering her age, you might want to look at her diet and eating habits as well.
 
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pheno responded:
When I was diagnosed with lupus I was 14 years old. My parents took me to for a second opinion that was the best thing they could have done. My first diagnosis was MS and the second opinion showed it just to be lupus. My point being that they were going to put me on medicine for MS and that freaked my mom out. I suggest getting s second opinion. As for the medications, I believe that they do help, I am on prednisone and I know how hard it is but it's not impossible and wish you luck.
 
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john-skpt responded:
Probably she will not be on prednisone for the long term. It's an effective drug but it has a lot of side effects, especially for children and teens. Cyclosporine is potent too, but somewhat more tolerable side effects. Lisinopril is maybe the safest and least offensive, over the long term. Lasix is goo too, but might be stopped if the doc thinks the swelling is controlled.

What is the daily dose of prednisone? What is the lasix dose?

Remember: NEVER ever stop predsnisone suddenly. It has to be tapered off gradually or it can be dangerous. Prednisone is easier to take on a full stomach.

The upside is that nephrotic syndrome, once controlled, is generally manageable.
 
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mstoots1 responded:
I am a 56 year old female..... I was diagnosed in 1987 to having Nephrotic Syndrome when I was in my early 40's. I was also advised that this disease usually targets young children. I too developed "swollen ankles" and I was prescribed Prednisone (60 mg a day), Lasets and other medication. I had to be hospitalized because of the fluid build-up.

The side effects are different for each individual, but for me it made me so so weak, I had to resort to using a cane for stability because I could barely step on the sidewalk without assistance...I could not drive for a while because of muscle spasms and dizziness. Because of the Prednisone I became a steroid induced diabetic.

It took over 2 years to wean my steroid dosage to 2.5 mg and over time I became stronger, I am able to walk without the assistance of a cane, I am almost back to my normal life.
THERE IS A LIGHT AT THE END OF THE TUNNEL. Just continue your daughter's medication as instructed and she will get better.

I sincerely pray that my testimony will help in some way to calm your worry but I understand your fear and concern about your daughter. (Give her a kiss for my and let her know that she will get better)
I will keep her in my prayers...........God Bless!!
 
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john-skpt replied to stemcellstransplant1's response:
The above post (not the earlier posts) are very probably a scam. Use caution when clicking these links.
 
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mrchrtly responded:
My grandson, who is 2 years old, all of a sudden developed a huge abdomen. He doesn,t seem to be in any pain but isn,t eating well. At the ER last night they told us that he has a kidney disease called "minimum challenge disease". I can.t find any info on this but it kinda sounds like Nephrotic Syndrome. He also has puffy hands and feet. They put him on steroids and we are to take him to a specialist this week. Has anyone heard of this? I would appreciate any info. Thanks, worried grandma.
 
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john-skpt replied to mrchrtly's response:
Try looking for "minimal change disease". It's not too uncommon, and almost never leads to renal failure. The main things that need watching are the protein loss numbers, and in some the balance of sodium/potassium.

Pediatric cases are always significantly different from adult cases though, so take anything that you read about adults with a grain of salt. Get more info from your physician. I'm just not familiar with pediatrics.
 
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An_250694 replied to mrchrtly's response:
my child was diagnosed with nephrotic syndrome @ age 3 and is now 10, she has relapsed about a dozen times & this passed summer had an acute renal failure.she has taken predisone and some others including an infusions in 2 sessions.she is in a relaspe @ this very moment & back on meds.i believe in her doctors inspite of everything she goes through,i also believe in the medication.continue 2 recieve medical attention and follow all directions given.nephrotic syndrome is a childhood disease also know as minimal changes.continue 2 research dont give up.i still do... have faith & believe.
 
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harlene25 replied to john-skpt's response:
gud day sir, i am also mother have son who has suffering this same illness, my son admit in a hospital for almost 1 week, the doctors gave to my son a prednisone,when he always got a sweling after he take a prenisone, all are swelling has already ok, i dont know what is a bad side effect of this treatment for my son, i dint think if it is good for him, he is only 1 1/2 years old! pls give me some advice, i dont know if this kind of illness can be cure, thank u


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