June 11, 2018, my youngest son (Skyler Ellery A. Imanil – 1-year-old) was diagnosed with Nephrotic Syndrome. Nephrotic Syndrome is a kidney disorder that causes his body to pass too much protein in his urine (He is peeing the protein on his body). His condition causes swelling, particularly on his feet, ankles, eyes, face, bloated stomach, and increases the risk of other health problems.
During the admission, the Nephrologist put Furosemide on his dextrose to remove the excess water on his body and the swelling too. To avoid swelling, Sky should not eat preserved foods and seasonings, because of the triple amount of sodium. Egg white 3 times a day will help lessen the swell. After he was discharged we did not know how to help him, and we could not understand where he was coming from. When he was in pain, he cried all the time, and we carried him all day even when he was sleeping. We had a hard time to make him take his medicines because it’s bitter. When he skipped taking the medicines he began to swell. He had a bloated stomach, high fever, and did not pee for 15 hours.
The whole night wasn’t easy. My mama was already crying, and praying so hard for his grandson. I contacted his father to call Doctor Collado to ask for some instructions. I had my son take Tempra, as instructed, and put a cold compress on his head to lessen the fever. In the morning, since Dra. Collado is not available she recommended us to other Nephrologists in Medical City – Pasig.
July 04, 2018, we met Doctor Adan and told her the condition of Sky. The Doctor immediately admitted Sky and took another test. Since Sky was having a fever and had no urine output, he developed a cough and which ended up to Pneumonia. He was given Coamoxidav to take for 7 days. He was discharged after 5 days, however, when we were at home, he had 16 episodes vomiting that consisted of previously ingested food and drinks, as well as phlegm. He also had multiple episodes of loose stools. We rushed him to the ER, and while we were there, Sky’s cough vomiting and loose stools continued. That’s another kidney relapse, and no peeing for more than 10 hours. Doctor Collado and Doctor Adan were not available to check on my son at that time, so I contacted my dear friend (Ma. Cecilia D. Leodones or Cesz) who referred me to the National Kidney and Transplant Institute. I immediately called the hospital had an appointment, we are scheduled on the same day.
September 2019, we met Doctor Vilvar, who became Sky’s new Nephrologist. My son was admitted there 3 times since he kept on swelling. The Doctor told us that Skyler needs to undergo Biopsy so she could identify the reason for my son’s kidney disease. The biopsy was done on February 24, 2019. Skyler was awake the entire time of the procedure because the 2 shots of anesthesia given to him seemed to have not taken effect, and he was just groggy. There were five doctors, and myself who held Sky because he was so strong and at rage. My sister lay in the bed while hugging Sky, and then, we tied them both to help control the movement. Doctor Vilvar had to take the sample tissue 4 times because she had a hard time inserting the needle in Sky’s back. After the biopsy, Doctor Vilvar said that Skyler is her most unforgettable and memorable patient in the biopsy. The 5 doctors were amazed at how strong is my son was.
The result of the biopsy is FOCAL SEGMENTAL GLOMERULOSCLEROSIS (FSGS). Skyler has diagnosed with FSGS a rare disease that attacks the kidney’s filtering units (glomeruli) causing serious scarring which leads to permanent kidney damage and even failure. FSGS is one of the causes of a serious condition known as Nephrotic Syndrome. Per his biopsy result, his kidney disease is inborn and his medication may take 2-4 years. Our strong baby angel is in a battle, but he is a great warrior and we know, in God’s name, he will win this.
After the biopsy, Skyler was given a 6 months treatment as an alternative to his medicines. Yes, it costs us a lot of money every month for the treatment but still, it is best for Skyler. Every 6 months the prescription is changing, there is no permanent medicine yet for Nephrotic Sydrome with FSGS. And to maintain his body, my mother is very hands on when it comes to his foods, should be all natural even his milk supplement is organic, we are using HIPP ORGANIC for his milk.
And to all the generous people, cousins, aunties who help (sending money from abroad and here in our country, foods, and prayers) a big thank you! It was an honor having you on our side, this journey will not be that easy without you.
(A mother of NS/FSGS patient – Gladys A. Imanil)