Nephrotic Syndrome...very confused.

• By amelieMA
• Posted September 7, 2008 at 1:09 pm

Hello Valerie,
We are in canada. I understand your concerns but try to learn as much as possible about the disease.
but only look at serious sites like www.mayoclinic.com or National Kidney Foundation. We have learned that
a high percentage of children are cured. this is not always the case with adults.
The prednisone was likely reduced because it was working well and his side effects were so severe. The
medication is a blessing and a curse but you need to trust your doctors. go to each appointment with written down questions.
I will be thinking about you and wish your son a speedy recovery,
Amelie

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• By Aweson-son
• Posted September 7, 2008 at 10:24 pm

The tiredness is something I seem to fight with all the time. There will be good days, and other days you just feel so tired. If the steroids work and he doesn't relapse he should get it back. If he keeps relapsing and it doesn't work when they take him off of the prednisone then it may not go away. It can work fast, and that is a good sign that he has responded to the meds. Just take it a day at a time and do read up on the internet about the disease. Also, ask your doctor lots of questions. Anything you don't understand.... ask. You pay their check! Remember that.

Allison

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• By kstreza
• Posted September 8, 2008 at 3:11 am

The textbooks say that juvenile MCD is often resolved (meaning negative or trace amounts of protein in the urine) within 2 weeks. It sounds like he started on the highest recommended dosage for his weight (doctors debate between 1-2 mg per kg of body weight) and responded quickly---which means the doctors will most likely continue to lower the dosage and test at crucial levels to make sure he's still negative.

If his serum albumin (protein in the blood) remains at a healthy level and he doesn't spill protein in his urine during the taper process and after he reaches 0, then the long-term side effects will most likely not apply. If he does have to remain on the prednisone for a significant period, your doctors should be able to discuss medications and options for dealing with the side effects.

As for the sleeplessness, try whatever you can to help him sleep, and know that once he's at lower doses sleep returns.

Don't be afraid to call nurses or doctors for advice and information--many hospitals have education centers with special medical professionals trained to answer questions and work as the middle man between doctors and patients.

This is a great site to share your fears--the parents that have been in your shoes and the teens and adults who can verbalize the side effects of prednisone on our bodies (and our stories of recovery!) are glad to share.

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• By rfcnj68
• Posted September 8, 2008 at 7:28 am

I live in the USA; it's great that he is responding to the prednisone so well, the doctors should start lowering the dose which should help with the side effects. The other thing to look at is do as much research as you can and ask the doctors as many questions as you can. I wish when I was going through mine first round 23 years ago all this information was so readily available. I was diagnosed at 14 with Nephrotic Syndrome eventually leading to a kidney transplant but that was in 1985 and have lived on a 10mg dose since. Even on such a low dose there are still some side effects but not nearly as bad as what you are seeing now.

I will keep you and your family in my prayers. My hope is that the prednisone works for him and he will never need a transplant.

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• By s-nathan
• Posted September 9, 2008 at 11:40 am

Valery

I pray your son has had "spontaneous remission" and does not spill protein in his urine ever again (and does not need prednisone).

This is a tough and confusing time - my wife and I have been through this with our 8 year-old son, who has had MCD (or (MCNS) since Oct 2006.

A couple of considerations
1) The textbooks say that it takes 10 to 14 days for juvenile MCD to get into remission (meaning negative or trace amounts of protein in the urine for 3 continuous days).
2) There are reports out of the Cochrane database in UK (reputable, independent database) that a slow weaning strategy during the first episode of MCD seems to have the best long term outcome. Please do a google search on the Cochrane database.

Our prayers and best wishes are with you.

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• By aartin
• Posted September 10, 2008 at 2:17 am

Thank you for your replies and kind words.

My son has been in remission for 4 days now. The Nephrologist hasn't ruled out spontaneous remission but is continuing the pred at a lower dose (25mg).

The side effects are still awful, he is still very tired and today he smacked his younger brother - he is such a gentle child so I think it is the medication.

He still finds it very difficult to sleep, I usually have to hold him and sing nursery rhymes for at least an hour. It breaks my heart when he tells me he is tired but can't close his eyes.

I also need to ask the Nephrologist why he was put on 40mg of Pred when he weighs only 15kg.

Thank you for the Cochrane database information (our Nephrologist also quoted this).

I would just like to add that this discussion board has saved my sanity over the weekend, so thank you.
Valery

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• By FLMom
• Posted September 10, 2008 at 12:39 pm

Valery -

Hang in there. Count your blessings that your son is responding so quickly. Our daughter, age 4, was diagnosed the first week of June and she has still yet to go into her first remission. We started at 30 mg of prednisolone and then increased it to 40 mg (her dry weight is about 11kg) She has been hospitalized 5 times in the past 3 months, and has received high-dose steroids for 3 days in July and 3 days in Aug. We just started on cytoxan to see if that helps and she is on 3 diuretics to control the swelling. As far as moods go, the steroids do make a change. Just know that it won't last forever. Our dr. said just to remember that is not ow our children normally are and do not feel that you have to make excuses to everyone for their behavior. Everyone keeps telling me the first year is the hardest. I hope your son continues to do so well.

Blessings, Lynette

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• By Rileys-parents
• Posted October 2, 2008 at 10:25 am

Hello Valery,

My son Riley has dealt with this for two years and the replys here are right the first year is the best. I hope your son is lucky as well our son has been compared to some of the kids on here. Riley has been deemed steroid dependent but the steroids always put him in remission after 2 to 5 days max. This is very good that your son responded well.

Riley has had several relapses over the two years with two hospital visits. The sleep does get better but even on low doses of pred we have had some late nights because he has not been tired. The outburst and crying and hitting are definitely the pred some I try to give my son a bit of a break but let him know still when something is not right.

Good luck and feel free to send a message to me if there are any questions you think I might be able to help with.

Mark

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• By sewexcitable
• Posted October 3, 2008 at 3:19 am

I've just seen your post. I hope that you have tapered down the pred now and sleep isn't such an issue. My daughter was diagnosed at 7 and when she was on high doses of pred she would be just about jumping off the walls at midnight. I found that Johnson & Johnson baby bathtime with the lavender and chamomile in it works really well. Coles and Woolies both sell it. We changed her bedtime routine so a bath was the last thing she did before bed. It seemed to help. We also put lavender oil on her pillow sometimes to help.

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