Nephrotic Syndrome - a personal experience
My son was diagnosed with Nephrotic syndrome at the age of 4.5yrs. He had recurrent viral infections which his pediatrician thought was quite normal for his age. Despite following a very healthy diet and good lifestyle he was sick every 4-6weeks. As a mom I knew there is a problem, hence the frequent visits to his doctor and the frustration of not being to prevent it . Prior to his diagnosis he became very ill, had a fever, abdominal upset and lack of appetite. He started getting puffy above his right eye. We visited his pediatrician’s office three times before a diagnosis was made on the tenth day. Three different pediatricians saw him during these visits. He was so swollen his cloths did not fit him. I believe he was spilling protein for a long time, but his body was strong and because of his lifestyle and dietary habits he overcame it until this last time when his body was just too weak.
The diagnosis came as a shock, followed by 5 days of hospitalization and lots of procedures and medications which could have been avoided.
My frustration with the whole experience is that the diagnosis was made too late. The simplest and cheapest test is used to make this diagnosis and it is absolutely mind boggling as to why doctors fail to order this test more often. All you need is a urine sample and a dip stick! An excess loss of protein in the urine is the indication for this diagnosis. Simple yet in any case I read about the diagnosis has been missed and the child ends up in the hospital with diuretics, blood pressure medications, prednisone and running a risk of developing clots, high cholesterol, risk of having a stroke and the list could go on.
My goal is always to prevent. I believe an in an ounce of prevention is better than a pound of cure”. If the test was done after the first sign of puffiness presented then he could have been treated with much less medications. He would not have develop fluid in his lungs, and have his albumin levels fall so low as not to show up on the lab test! Now I have to check his urine every morning with an Albu-stick (specific for protein in the urine). The urine dip stick has other benefits; in case a child is developing diabetes and the symptoms are missed the glucose will show up in the urine. In cases of infection many times a child may not communicate their discomfort or may have minimal symptoms yet the test may show evidence of urinary tract infection so all in all the benefits of the test will out way its minimal cost.
My suggestion to the parents is to ask for a dip stick urine test whenever you see your child is getting sick too often and not recovering well despite the healthy lifestyle and proper diet. This test can be done at home so you may choose to purchase a bottle of dip sticks and test your children at home from time to time. I believe asking for the test and having a diagnosis early is very important and from a cost benefit factor, if a test costs 0.25cents to a maximum of 0.50cents but prevents hospitalization and unnecessary medications then at the end it costs our healthcare much less!
I have included some general information regarding Nephrotic Syndrome below. I welcome any comments you may have or if you would like to share your experiences.
What is the Nephrotic syndrome?
This is an illness where the kidney loses protein in the urine. This causes protein in the blood to drop, and water moves into body tissues, causing swelling (edema). You will see the swelling around the child’s eyes, in the belly, or in the legs. Your child will not go to the bathroom as often as usual and will gain weight with the swelling.
What causes the Nephrotic syndrome?
In the majority or cases, the cause is not known. The National Kidney Foundation has active research programs into causes and treatments of the Nephrotic syndrome. Viral infections can often play a major role.
Who gets it?
Usually, young children between the ages of 1 1/2 and 5. It happens twice as often in boys as girls. However, children of all ages and adults also can get it.
How can you tell if your child has it?
You may see that your child has swelling around the eyes in the morning. You may think that your child has an allergy. Later, the swelling may last all day, and you may see swelling in your child’s ankles, feet and belly. Also, your child may be:
• more tired & more irritable
• eating less
• pale looking
The child may have trouble putting on shoes or buttoning clothes because of swelling.
How is the Nephrotic syndrome treated?
The treatment will try to stop the loss of protein in the urine, and increase the amount of urine. Usually, the doctor will start your child on a drug called prednisone. Most children get better with this drug.
Thanks! That’s just what I needed to read.
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Comment by Cesar B. aka the Mover — November 10, 2008 @ 6:07 pm
Have you heard of any natural remedies that will help keep the protein level down? I have a child recently diagnosed with NS and prednisone is a very strong drug and difficult to stay off in many cases.
Thank you.
Comment by justine — November 10, 2008 @ 8:38 pm
Hello Justine,
in response to your question regarding a natural remedy to keep the protein levels down, unfortunately there is not one particular supplement that I could suggest. however, since nephrotic syndrome is autoimmune based, the foccus should be to keep the body in a balanced state. I pay particular attention to my son’s diet minimizing his salt and sugar intake, boosting his immune system with particular herbal supplements and vitamins (including vitamin D) in the winter. I would suggest looking into food sensitivities which are different form allergies. keep up his diet as when he is on prednisone (low sodium, low carb, low sugar, low fat). My foccus with my son is to maintain his health as long as possible with supportive natural medicine (herbals, vitamins, hoemopathics). cenrtain physiological changes in their growth can be responsible for a relapse i.e. growing in molars. other aggrevating factors to consider are vaccination, my son had a relapse the night he had his DPTP booster shot. I am NOT advising you to avoid vaccines, however they are listed as a causative factor for N.S. and I have seen a direct link in my son’s case. There are some homeopathics and herbals which can be used once some protein loss is detected. however your child needs to be under suppervision of a licenced Naturopathic Doctor so that the treatment can be individualized to their need. It is not definitive and so far I have not been able to find an equivalent treatment to prednisone. I have been able to delay the start of prednisone but it all depends on what the cause is and why the body is reacting this way, when there is an inflammatory process in the body or aggravation due to allergies, sensitivities, emotional factors or enviromental factors then a relapse is likely. I hope this comment has been beneficial for you, if you have any other comments please post it and I will get back to you.
Comment by tannaz — November 12, 2008 @ 11:38 am
My brother contracted Nephrotic syndrome when he was about 6 he is now 18. He manages it with diet mostly. He avoids salt and processed foods. He also drinks a cup of Georges Aloe Vera Juice every couple days. My parents learned of this from a doctor who had used it. They wanted to do clinical trials but the manufacturer did not want to release their formula as was required. From what the doctor told them this worked well for nearly everyone who took it. My brother has done quite well with Georges Aloe Vera. It has to be this brand there is something different about it. It tastes like water so it is easy to drink unlike some others. With this and astragalus root he has had to take prednisone for a less than a year total in the 12 years he has had this disease. He only takes prednisone when he has a relapse until he is healthy again. Usually the relapse is due to stress. Hope this helps
Comment by otto — January 6, 2009 @ 11:10 pm
My frustration was the same as yours. My daughter was then turning 4, she had all the symptoms as your son. For two weeks, her paediatrician could not determine the problem. In the end, it was hospitalization. Very high blood cholesterol, very low albumin level, very much of unnecessary suffering! It’a almost a year now. She has had a few relapses since, and it breaks my heart whenever she has to go back on prednisone. I wanted to try homeopathy, but don’t dare since it is not really clnically proven. we tried some herbal remedy from Austria and the next morning she had a relapse. Now I’m just waiting and hoping it will go off by itself before having to start prednisone again. Any advice will be most appreciated.
Comment by Nalina — April 14, 2009 @ 8:40 am
My son Mohd. Kaif is six and half years old suffering from Nephrotic syndrome since February 10th 2009. My nephrologists at the begging prescribed Prednisolone 45mg every day for two momths, One month alternate day and then slowly tapered in three months. June 10th we stopped the medicine and one month till July 10th he was well. One day he had a cough and cold then slowly he developed to relapse protein +,++,+++ in India. I approached the paediatric nephrologists in Delhi India, he advised me that he had a relapse once again. First three days he prescribed 30mg prednisolone (in three days protein became nil) then he advised to alternate day and slowly tapered in three months. I had notice that when he is taking 10mg prednisolone alternate day then protein is nil, but when we are giving him 5 mg his protein is traced one day and second day nil. This is happening since last two weeks. His weight is 21kgs and currently I am giving him 5mg prednisolone alternate day.
Sir can you please advice me your opinion, I and my wife very upset with this and do not want to continue prednisolone any further.
Regards,
Irfan
Comment by Irfan — October 4, 2009 @ 4:44 am