Diagnosed with Nephrotic Syndrome

September 13, 2016

After the whole week of swollen eyelid, we decided to bring Josh to the doctor today. My feeling said that something was not right. Altho my baby had been as playful and active as before, still I felt like I needed to bring him see the doctor.

Josh with his puffy eyes. Still active as always.

I had browsed in the net and found some articles regarding swollen eyelids plus babies gaining weight rapidly. Josh gained 2 kgs within these two weeks and I thot it is a bit too much. Well, I wud be extremely happy if it was a normal weight gain becoz he had been having good appetite. The articles pointed to children’s kidney disease. Nephrotic Syndrome. I was super worried. His daddy said that I think too much..but I cudnt help it.

Josh on his 2nd birthday, a week or two before his puffy eyes and rapid weight gain.

Call it a mother’s instinct so I kinda forced my husband to take us to doctor today. It was a very long queue. A lot of children got sick. After waiting for a good two hours, we finally got to see the doctor.

When he first saw Josh, he asked about Josh’s swollen eyes. I told him that Josh has allergy, but I dun think that the swollen eyes are becoz of his allergy, becoz the eyes are not red and he din seem to be bothered by his swollen eyes. Then I mentioned about his rapid weight gain. He asked me whether Josh’s legs were swollen. I said, his legs are getting bigger but I thot it’s normal since he is gaining weight anyway.

When the doctor checked Josh’s legs, he looked so concerned I wanted to throw up. He said that it was not normal. Josh’s legs are getting bigger not becoz of normal weight gain, but becoz of fluid. My heart sank.

He asked us to quickly do blood test. And have the result sent to him within that day. He said that it’s urgent. He pre-diagnosed Josh with kidney disease, hence he needed the blood test result to confirm.

I looked at my husband. He looked equally shaken and pale. I managed to get a hold of myself until we went out.

We then went to a restaurant next to the clinic to have a quick lunch. It was going to be a long day and Josh had not had his lunch. I cudn’t stop myself anymore I cried there. How cud this be possible. Kidney disease?? A two year old?? My poor baby.. :(( I hope the doctor was wrong. I hope the blood test showed us something else.

On the way to the lab, I was also very nervous. Josh was sleeping in my arms. In a couple of minutes, they are going to poke his arms. I knew he wud cry and scream, and I cudnt do anything about it. :((

Long story short, my baby did well during blood test. He was such a brave boy. He did cry, but not for too long. I kept on telling him over and over again ‘Mommy loves you. Look at mommy, i know sakit baby, mommy is here with you.’ :'((

Later that day the result came out and I texted the doctor. He replied at nite that we need to come and see him the next day to get a referral letter to a kidney doctor. Josh is confirmed with Nephrotic Syndrome.

I couldnt sleep the whole nite. I still had to go to work the next day. I took a day off and I needed to show up the next day. My heart ached, I really din know what to do. I kept on waking up at nite hoping that it was a bad dream. But it is not :(((