How long has your child been diagnose... - Parents of Childr...

Parents of Children with Kidney Disease

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How long has your child been diagnosed with kidney disease?


Hi all, this is the first post in our 2 week question series!

We're interested in knowing when your child was first diagnosed with kidney disease.

How long has your child been diagnosed with kidney disease?

What was the trigger for diagnosis?

How old was your child when they were first diagnosed? What made you seek an initial opinion?

Share your experiences and interact with other members in the comments below!

26 Replies

Our child was diagnosed with kidney disease in July 2016 when she was 7 years old. She got HUS as a result from having ecoli and her kidneys never recovered.

My daughter was diagnosed 7 months ago, at age 8. She had strep 5/6 times over the months leading up to her diagnosis. Over spring break, we noticed she was gaining weight, but didn’t think much of it. On Easter Sunday, her legs seemed to be growing before our eyes. We finally took her to the ER and they thought at first it was all from the strep. She was sent to Yale’s children’s hospital the following day, where the dr immediately admitted her for the next several days to run tests and get 14 pounds of fluid off and we were given a diagnosis of nephrotic syndrome. Originally we were told minimal change disease, but when she never responded to steroids, we had a biopsy and discovered it is not McD.

My son was Diagnosed in May of 2016! He was only 2 at the time he was diagnosed. We don’t know what exactly caused the Nephrotic Syndrome the doctors don’t know either. They think he was sick with a virus etc. that was misdiagnosed,but we aren’t exactly sure. Before he was diagnosed he had swelling in his private area we were really concerned so we took him to the ER where they said he was fine! After a couple days we took him to his Pediatrician and they admitted us right then and there for swelling and distended stomach! They did ultrasound and test and that’s when they came to us and told us it was Nephrotic Syndrome and we were transferred to our Children’s Hospital!

Our daughter was born prematurely at 34 weeks because of concerns about her kidneys. She was officially diagnosed with ESRD almost immediately after birth and started peritoneal dialysis a week later. She stayed on dialysis until she got her new kidney (from me!) at 18 months old. It’s been a LONG road but today she’s happy, healthy and will be turning 3 this week! 💚

My son was diagnosed with Nephrotic Syndrome at 6yo..found out when he went the ER for peritonitis from an injury while at school. We went through almost 10 years of relapses, medical trials, hospital stays, hopes and dreams. He is now 19 and incomplete remission for 2 years now!

mbhnycNKF Ambassador

My daughter was diagnosed at birth, after we lost her twin to acute twin-to-twin transfusion syndrome. That was over 9 years ago. She had a transplant at 4yo.

My child was almost 8 and is just turning 11 today. She kept getting strep throat and blood and protein in her urine. Nobody would do anything, so I started researching myself and found out about glomerulonephritis. The doctor agreed to send her to a nephrologist and after a biopsy was confirmed IGa nephropathy.

How long has your child been diagnosed with kidney disease?

8 years...Nephrotic Syndrome MCD

What was the trigger for diagnosis?

swelling all over...thought it was just allergies until his scrotum swelled 3 x normal size

How old was your child when they were first diagnosed? What made you seek an initial opinion? he was 7. his scrotum swelling lead us to the pediatrician then to the ER

My son was born 7 weeks premature as a result of kidney failure. My pregnancy was seemingly normal and we have no known history of kidney disease within the family (among living relatives). Nothing abnormal was detected during my pregnancy. To say we were surprised is an understatement. Shortly after my son was born, doctors detected a high level of protein in my son's urine indicating kidney issue(s). Genetic test results confirmed our son has Congenital Nephrotic Syndrome of the Finnish Type. He was in the NICU for 4.5 months where he began peritoneal dialysis at 3.5 months. Once he came home at 4.5 months old, he did PD nightly until he was transplanted by living donor (his father) at age 20 months. Our son is now 5+ years post-transplant and just turned 7 years old. Our life 5 years post transplant is much calmer than the time leading up to transplant; less medications, less bloodwork, fewer doctor appointments, less uncertainty ... well, new uncertainties at this stage! He is still seen by a pediatric nephrologist quarterly and his transplant center annually (bloodwork prior to all visits), but all in all, we are in a great place and he is living his life to the fullest!

My son was diagnosed 14 months ago when he was almost 1. He had a 103 fever one night so I took him in to the doctors the next day and they cathed him to check a urine and found high protein. We rechecked 2-3 months later and protein was still high, and he had hypertension. We went to Children's Hospital to see his nephrologist for the first time and when Braxton was 10 months old we did a kidney biopsy which still came back inconclusive. Finally, we got genetic testing approved with our insurance and after 12 long weeks of awaiting results...We got the diagnosis of Dents Disease right before his first birthday!

My child was diagnosed with poly cystic kidney diseases in utero. Or rather we saw it on the ultrasound and then confirmed after birth. She is now 5 1/2 and has been seen by a nephrologist a couple times a year. During a routine ultrasound they saw a bright spot and were concerned. It was then discovered that I also had PKD after further testing.

My son was diagnosed with multicystic dysplastic kidney in utero. It was considered a birth defect as we have no kidney issues on either side of our family. Once he was born, it was discovered that he had kidney reflux in the good kidney, and he was put on sulfer meds until he was around 5 years old and it cleared up on it's own. His left kidney which was the multicystic one, was determined to be non-functioning and it eventually atrophied and left his body on it's own accord. He functioned fine with one kidney until about 14 months ago when his urine turned dark brown. After much testing and a kidney biopsy, he was diagnosed with IGAN - he was 16 years old.

My son, who is now 13 years old, was diagnosed with an associated Anca vasculitis (MPA) with severe renal involvement in March 2017 who left him - after heavy treatments and complications - with third-degree renal disease. Today he is fine and the renal function is stable. The disease is in remission but he has to have frequent checks because the vasculitis could releap. I would like to know if the kidney disease necessarily progress if the basic disease is in remission and how we can slow down this possible progression?

Our child was diagnosed with kidney disease in November 2013 during our 18 week ultrasound. He had a puv blockage that caused reflux into his kidneys.

Our son was 5 when he was diagnosed with Nephrotic Syndrome. It was May 29th, 2018. We are unsure of the exact trigger but it all started in April when he woke up with puffy eyes and had an ear infection. We treated the ear infection and were told the puffy eyes were probably a side effect from the ear infection. After a month of waking with puffy eyes, we were just told that it could be allergies. Over this time he was also gaining weight. He then got Strep and continued to gain weight. Finally after a trip to the ER almost two months later, we were put in touch with an amazing Pediatric Nephrologist when he was finally diagnosed with Nephrotic Syndrome. Several doctor trips and no one addressed the puffy eyes and rapid weight gain. My mommy instincts couldn't let it go though. I knew something was wrong with my baby.

I actually researched Nephrotic Syndrome TWO days before our ER trip by googling his symptoms and even brought Minimal Change Disease up to the first ER doctor who didn't even know what it was. At that time he was transferred to a different hospital where they made the diagnosis!!

My daughter was 12 years old when diagnosed in July 2018. She was taken to the ER because she was very swollen while at camp. The trigger at camp was they were pushing lots of fluids because it was very hot and the kids were outdoors- to prevent dehydration. But she had very bad swelling to extremities and face. Looking back, she had put on some weight over the prior 6 months but I just attributed that to unhealthy eating. Of course in the hospital they detected the protein in her urine and gave us the Nephrotic Syndrome diagnosis. She did not respond to steroids so a biopsy was performed a 1 1/2 months post diagnosis and has Membranous Nephropathy which is very rare in children.

My son was diagnosed in August of 2016 he was 2 years old . Qua’mel was born at 25 weeks he was having some trouble with his kidneys after birth that resolved. Around 1 years old he was slowly gaining weight, also his soft spot was sunken in and no appetite. We talk with the Gastrointestinal Doctor, she put him on a appetite inhancement that didn’t work. Also we made a appointment with the PCP cause we thought maybe he was dehydrated since his soft spot was sunken in . The PCP said that he was fine , the medicine that the gastrointestinal doctor put him on only made him sleepy so I stop giving it to him.I knew something was not right my son didn’t have any energy and looked drained. So we took him to the emergency room I asked them draw some blood work ,they said he was good . I said this is it !!! No one is not going to tell me that my baby is fine , by that time it was time for a follow up with the gastrointestinal dr again . I asked for a Barium swallow test and she looked at me and then decided to do blood work along with stool sample. Blood work came back his sodium level was severely high and had to be admitted into the hospital ASAP. Qua’mel was severely dehydrated , electrolytes was not stable,and malnutrition . At that point he was at stage 3 CKD. Qua’mel urine don’t concentrate which mean he constantly urinate even when he don’t have anything to drink .

My child was diagnosed in 2011. He was 3 1/2. We think his trigger could’ve been a cold he had right before. His eyes continued to swell so much, that they were almost closed. After a few visits with others doctors in our clinic, our regular pediatrician came back from vacation and immediately recognized nephrotic syndrome. She dipped his urine and sent us straight to the children’s hospital.

My son was diagnosed with kidney disease at 6 days old (or potentially in utero, I guess it depends on how you define "diagnosed"), 6 years ago.

What was the trigger for diagnosis? He was very sick, we expected kidney issues from prenatal ultrasounds, and when they were finally drawn, his labs were a disaster.

We had just gone in for a 20 week fetal anomaly scan, since I have a condition that makes it more likely I'll have babies with spina bifida and we were planning a homebirth (which would be dangerous with spina bifida). Found bum kidneys instead.

When he was born, the idiot hospitalist on call that day decided that, since he'd peed shortly after birth, his kidneys must be working and he didn't need to run labs or see a specialist, and he wouldn't listen to us. My son turned out to have high output renal failure - he was peeing, but he wasn't peeing good urine - he was peeing out everything. He was dehydrating himself and also peeing out all of his electrolytes. He was a very very sick baby by the time we were able to see the nephrologist.

My son was diagnosed officially at birth, but they knew he would have problems around 28 weeks gestation after problems were found on an ultrasound. He had a birth defect, Post urethral valves that damaged his kidneys and urological system. He is 6.5 years old, He is currently stage 4 CKD and will most likely need a kidney transplant in the next 3-5 years.

My daughter was first diagnosed with Nephrotic Syndrome Minimal Change Disease in November of 2017.

So far, we're going on almost a year.

We are unsure of her trigger, because she wasn't sick at the time of diagnoses.

She was 2 years old, and we went to the pediatrician because her eyes were swollen. A few days later the swelling spread to her arms, legs, and groin region.

AHP2018NKF Ambassador

My daughter was 3 months old in May 2006 when we learned she was in kidney failure. She was vomiting and crying and losing weight so I took her in for blood work to rule anything bad out. The labs confirmed kidney failure. A few weeks later we learned she had a rare genetic disorder called primary hyperoxaluria. She had a combined kidney and liver transplant in June 2007. She is now 11 years post-transplant.

My 4 year old son was diagnosed with nephrotic syndrome 3 months ago. We noticed his eyes swelling and thought he was having an allergic reaction to something. After several weeks of trying to figure out what was causing it, we noticed his stomach was bloated so we took him in to be looked at. They did some blood work and ordered an X-ray, all which came back normal. We were told to try some stool softener for his belly over the weekend to see if it helped. I was just googling swollen eyes and stomach when I came across a post like this one about NS and called the doctor. We had his blood and urine tested for protein and were sent to the hospital.

My daughter was diagnosed with minimal lesion glomerulonephritis at 13 years old. She developed hematuria and proteinuria that was found incidentally at her well child check that year. Her urine was rechecked a couple of times over the next couple of weeks and upon those numbers rising, we were immediately referred to a pediatric nephrologist. Within a few weeks she had multiple tests and a biopsy to confirm the diagnosis so that they could treat her appropriately.

My son is 9yrs old, he was diagnosed 3 months ago at 8yrs old with CKD 3. He was diagnosed with ADHD, his pediatrician called for a blood test before we put him on the medication. The blood test came back his creatinine levels were elevated. Which started us down a long process of dr. Appointments at Texas childrens hospital.

My son will be 1 on May 6th, he was born with one functioning kidney and that one has hydronephrosis. Doctors caught this on my 20week US. So he has had CKD since birth.

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