Our six year old has Nephrotic Syndrome
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I have a six year old son who has been diagnosed with nephrotic syndrome. He had swelling in the eyes, and his protein was more than 600. The nephrologist put him on 7 ml of prednisone twice a day since November it is now January and he has gained weight. We have an appointment in January and we are worried that he will relapse. My husband I were told that this is a childhood disease and will go away by 12 years of age. His urine has a trace of protien how, but we have read stories that the child relapses 5 years later or later on I their life. We are so worried does anyone have an similar stories or any advice that will give light to us. Thank you.
0 likes, 3 replies
Rubygem jill22487
Posted
my daughter was diagnosed with IGA nephropathy 16months ago. She is 12 years old and was put on prednisolone 80mg daily. She gained alot of weight but the steroids saved her kidneys. We have a long road ahead and still monthly check ups. Like you my fear is a relapse. She is now on a small amount of steroids and other treatment. At the last appointment my daughters bloods and results were the best they have ever been. It does get easier. Just wish we could swap places with them. My daughter now had her energy back and is on a strict diet and exercise plan. keep strong. Gemma x
gjorgji77696 jill22487
Posted
Our daughter was diagnosed NF when 4 and now she is 10. She relapsed few times a year. Prednisolon will cause gain in weight and moonface effect but only during its administration. What is important is to identify the category of NF ( in our case is minimal change disease) by means kidney biopsy. Tapering teatments can include Cyclosporine which can be nephrotoxic to kidneys and Celcept (generic drug name) as an alternative. In any case parents should closely monitor the urine and child situation. Sometimes a second medical opinion is also helpful. It also important that the drugs taken shall follow the weight gain pattern i.e amounts should be per kilo.
eric31962 jill22487
Posted
Dear Jill and family,
I also share this condition. I was unfortunate to have five months in hospital and about six months on dialysis which was grim. But I have now recovered and am no - longer seeing a Nethphrologist . This condition can be beaten and controlled. Get the best medical advice and stick to it like glue. Do not take herbs etc, at silly prices and have a normal healthy diet.
Blessings and good luck. Ex