Hello Everyone!!!
By now you all know that I have a Son as i keep posting his pics time to time. His name is Sreyansh and I call him Rik.
Well this story is about him and about me and my husband too. This story is about us as a family. Rik was 1 and a half year old when all of sudden he had stomach infection along with running nose at least the symptoms were alike. And within a few days his eyes all of a sudden started swelling up along with his ankles and abdomen. Initially with swollen eyes we thought it must be some eye infection but even after a day when it didn’t turn back to normal we started worrying plus he was not eating at all. We went to consult his pediatrician and he with just looking at him diagnosed that Rik must have had Nephrotic Syndrome. After tests were done, it was verified and of course we got to know that our little child had this disease.
Then our doctor elaborated what this syndrome is and that it’s a very rare disease without any such triggers. Fewer than 1 million cases are detected per year.
So What is Nephrotic Syndrome?
It is a Kidney disorder that causes the body to excrete too much of protein in the urine. It is a chronic disease and lasts for years or be lifelong. albumin is the one of the protein lost in urine.
Symptoms of Nephrotic Syndrome :-
Severe swelling(edema), particularly around eyes and in ankles and feet. Foamy urine, which may be caused by excess protein in urine. Weight gain due to excess fluid retention. Fatigue. Loss of appetite.
Treatment :-
Should be treated by Nephrologist Pediatrician. The primary medicine used is a steroid. Yes Steroids are the medicines that can control this syndrome. In cases of relapses another type of medicine Levamisole might be introduced by the doctor.
This disease occur to kids and adults. It lasts till 12 years max in case of kids if lucky. It damages the kidney in adults severely in most the cases.
Trust me when i heard about it the very first time, I was shocked and devastated just by thinking about varied consequences that might occur. Our doctor told us to take him to a specialist and honestly we didn’t have any clue back in 2010 what to do and how to proceed as none of us ever heard about this disease and of course we panicked a lot considering its related to the kidneys. Then we consulted Dr. Jayanta Bose, a nephrologist in general. He checked and gave medicines and Rik got better at least the swellings went off due to the steroids. But that process was beyond my imagination. Till date I get goosebumps remembering those initial months. We all know what steroids are like. Rik used to take 10mg every alternative days but the effect of those medicines were beyond belief. Steroids increase the level of food consumption like ten times. Rik used to remain hungry every time. And he was hooked and craved for particular food items specifically. I had to feed him like 10 times in a day that too just extra boiled rice with ghee and without any salt. Yes HE WAS IN A SALT RESTRICTIVE DIET FOR LIKE SIX MONTHS. His food changed but everything was without salt. He used to eat 5 EGG WHITES everyday as egg whites are the direct source of albumin protein and it was also a type of medicine for him. In that very tender age he gradually started putting on weight and I am talking about a time span of a month or two. He used relapse a lot so whenever the medcine stopped like in a week period, the swelling starts again. It went on for like 6 months and I felt that something was not working. We again went back to the pediatrician and he was angry on us and again referred us to a specialist. Back at 2010, there were not more than 3 or 4 nephrologist pediatrician in Kolkata. Thnakfully we got hold of one of the best whose chamber was in Apollo Gleneagles Kolkata at Swabhumi. Dr. Amitava Pahari, the doctor, he genuinely is like a GOD to me and I will be eternally grateful to him my entire life. The very first day we visited in the day time at OPD there, it was hugely crowded and that day I saw at least 40 children are affected by this disorder with variations as there are many types of this disease. People from Bihar and Chattisgarh came to consult him.
Anyway, he added back salt in the diet as due to no sodium in the diet, Rik was lacking energy and focus and was getting weaker everyday. He introduced a new set of steroids along with multivitamins and calcium as precautions due to the side effects of the steroids. The hunger pangs continued but doctor used to tell me that I need to keep a check on his weight. So even if he was crying for food, I had to behave strictly diverting him with other activities and making a time routine for food consumption. Thankfully he started eating everything and there were eggs too. But in a year Rik suffered from more than 4 relapses. So a levimisole was introduced in his medicine chart.
Basically Steroids used to keep a control on the protein leakage from the urine but as the effects of steroids used to die down after suspension of the dose,it relapses. So Levamisole were given on alternative days to stimulate the immune system to reduce the need for steroid treatment. This went on for 7 long years with loads of incidents.
Kids having this disease lose on their immunity so they are easily susceptible to getting infections from even a little dust to rain. He was always under a anti-allergy dose to deal with the infections. Any type of infections trigger the disease resulting in leakage of proteins. I had to test his urine on a daily basis with a Euristick kit at home to know the per day urine leakage level. We are not aware of the fact that we all leak a very negligible amount of protein too through urine.
Anyway, every year the relapses frequented due to infections and there were times when he was prescribed for bed rest and no school days for a week at least. I never sent him school when he had cold as its contagious in general and it wont get cured like that as other kids might catch cold and he will get from that too. I was very particular about it then. He couldn’t had polio drops in regular frequency, he had to miss few vaccines also which were prohibited while steroid dosage and only were given after a minimum gap of a year of steroid suspension. We tried our best to give him the best possible things by not compromising quality. He used to remain in AC in summers most of the times, couldn’t play cricket or football due to dust, till now couldn’t swim too. These seven years were pretty hard indeed.
There are many types of Nephrotic Syndrome. He suffered from Congenital Nephrotic Syndrome which is passed from generations. It might not resurface and skip a few generations, but its quite unpredictable. Nobody in our family knew about this disease as nobody heard it happening to anyone before. But recently his paternal Aunt’s son was diagnosed by the same disease too proving the theory.
There are very subtle side effects of the steroids, and Rik does suffer from leg pains. He was initially very weak in studies too. The steroid stopped for 2 years now and last year, in the month of February, the levamisole was stopped too. After the steroid stopped, his improvements in studies were seen as compared to the initial years. He is 10 now, I just wish everyday that he doesn’t suffer from another relapse. First thing in the morning that I do is check his urine whether its foamy or not and also check his eyes whether its swollen or not. Whenever he catches cold or he suffers from upset stomach, my heartbeat do a double time. Yes I am very much possessive about him but have seen the little kid, having so many medicines every day from such a tender age and going through so many tests every year. Honestly, he is more brave than me regarding injections and blood samplings. Was very anxious last year about the last report on his kidney, and when the reports came normal, all that happened passed by in front of me like a movie. Tears never did justice to what me and my family went through. I would never wish anyone to go through this ever. The feeling of losing your child can never be compared to any other horror. Travelling in a bus to waiting in a line the whole day for your number to eating food without salt to becoming a tyrant to stop him from eating too much to doing blood samplings to testing urine and crossing fingers for getting negative proteins as the result to fighting infections and bunking schools and giving explanations to school and people to trying and trying to make his world the best —— it wasn’t an easy journey at all.
The purpose of this post is to make everyone aware. I know its a long read, but its just to make you aware to keep a check on your children with abnormal swellings and alike. There are numerous types of diseases which we aren’t even aware of till date and in spite of googling we wont be knowing them may be. So sharing my story with you all. Hope this helps everyone here for a better present and future.
Warm Regards
Proud Mom of Rik!!
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