About Nephrotic Syndrome

Praise to God, today is less than two years pass the heartbreaking incidence of my little brother. Now he is already 7 years old. He leads his day-to-day as usual as other kids. But the medicines is still need to be continue, but the doses of his medicines is less than before. From 33 pills to 7 pills per day now.

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So for the reader especially the parents that have the children. Please take care of your children health. If your kid having a fever, immediately bring them to the nearest clinic. 

Here I want to describes a basic thing about Nephrotic Syndrome:

Nephrotic syndrome is a kidney disorder that causes your body to excrete too much protein in your urine. Nephrotic syndrome is usually caused by damage to the clusters of small blood vessels in your kidneys that filter waste and excess water from your blood. Nephrotic syndrome causes swelling (edema), particularly in your feet and ankles, and increases the risk of other health problems.

Symptoms of Nephrotic Syndrome 

1) Swelling (edema). It may occur: 

      - In the face and around the eyes (facial swelling)

      - In the arms and legs, especially in the feet and ankle

      - In the belly area (swollen abdomen)

2) Foamy appearance of the urine

3) Poor appetite

4) Weight gain (unintentional) from fluid retention

The causes of the Nephrotic Syndrome

1) Different disorders that damage the kidneys. This damage leads to the release of too much protein in the urine.

2) Heart failure.

3) Genetic disorders

4) Immune disorders

5) Infections (such as strep throat, hepatitis)

6) Use of certain drugs

Second Test from God

On 2013, after almost the whole year went well, Arif Sufyan, my little brother got through his life well. But not every story end up with happy ending.

On August 2013, all Muslims celebrated an Eidulfitri with happening. So do my whole family. But here I’m not going to write about our Eidulfitri celebration, but the unforgettable thing that happened to lovely little brother.

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On the second day of Eidulfitri, as usual my family went to my relatives’ open house. Then we have met some of relatives there. But on that day, my little brother was too excited to play with my cousin until we realize my cousin was actually having a chicken pox. The paediatricians were warning my parents at almost times that NEVER LET MY LITTLE BROTHER GET CLOSE TO THE PEOPLE THAT HAVING A FEVER, FLU AND ESPECIALLY CHICKEN POX. It will give a big effect on my little brother.

On the third day of Eidulfitri, Sufyan was having a fever. We went to the clinic to check him up. He was given a fever medicines to heal him. Praise to God nothing bad happened…on that time.

Two weeks later, my little got a fever again, bad fever. He was suddenly became weak, his body started swelling. He was admitted to the hospital again. For second time. His condition was really weak. All parts of his body getting swelled. My little brother cannot walk properly. 

That was the saddest moment that I ever had in my life. Seeing his face had burst me into tears. Not only me, but my mom, my grandmother and my other family members.

Everyday my dad reminds me and my siblings that never stop praying for our little brother.

Day by day past, my little brother was still in the ward. Every night before he sleep, he said to my mom he miss his school. He want to meet his friends as he didn’t come to the school about a month already. But he knows how will people react with his physical if they will meet. He want to participate in his school concert as he was so excited waiting for that day. But he can’t. His form teacher called my mom, she said my little brother will not be replaced by anyone. She don’t dare to do it.

After the third week my little brother was in the ward, his condition didn’t change at all. But become more severe. Until one day, when I was at school, I got a call from my brother, my little brother was in critical, the ambulance brought him to the Hospital Tengku Ampuan Afzan at Kuantan. My little brother must be referred to a specialist children’s kidney. Only God knows how broke I am on that time.

But, my mom told me, after a week my little brother was admitted there, his condition fully changed! His part of bodies didn’t swelled anymore. Furthermore when it comes to injection, the doctor there not let my little brother keep getting scared with injection, and the doctor. They knows how to handle kids well. I felt so release and thank to God.

After three weeks my little brother was in ward, he was able to go home. I was soooo happy on that time.

Be A Special Little Boy

Three years past day by day after he was admitted as Nephrotic Syndrome patient… My little brother, Arif Sufyan went through his life normally, as other children. Everything was went well. Even his life still belong with the medicines every day, but he already understand about that.

He knows what he should and shouldn’t eat. Even some kind of foods that he not allowed to eat are his favourite.

He knows every month he must go to the hospital for medical check-up. Even he knows every time he went to the hospital he will get some injections for blood test and for him that is the most pain he ever had.

But he also knows he can’t do anything. He understand he can’t change the fate for himself, but he is still happy and went to school as other school. Playing around like other children.

Sometimes when he listens other people talk about himself, about his illness or he looks my dad surfing internet about her disease, he asks

“Will I die because of my illness someday?”

“Will I recovery completely?”

He will not asks directly on that time when he saw my dad in front of the laptop or in front the people that were talking about him. But he will ask only when he is with my mom. Then my mom will tell me.

Now tell me which mom are not sad when his child that are still not understand about the real life and world but tend to talk about death????

Pain That Not Invited

On 2010, my little brother Arif Sufyan was already grown up as other children. His cleverness and happy-good-lucky attitude was always made the whole family feel alive. As he was a younger siblings and has an age range with my sister about 8 years, of course he got full attention from us.

……………….

He was a normal hyperactive boy like some kids out there. Until one day on October 2010, my mom realize that something wrong with my little brother in physically. His legs were look like swallow and his cheeks become chubbier than before. My mom had referred to the hospital as my little brother become weak and always had a fever on that time.

On the same month, Arif Sufyan was admitted at the hospital Sultanah Zaharah in Kuala Terengganu. On that time his face and almost part of his body become swallow and looks like balloon!

His face when he admitted to the hospital

After had some check up with the paediatrician, finally the doctor said that my little brother is having Nephrotic Syndrome which relate to his kidney filter. That news was really shocked my whole family of mine. My little brother was never shows any changes of his health before. All of these just like happened on sudden. I’m close with him of course I’m the saddest one when this was happened to him.

My little brother admitted at the hospital about 3 weeks long. He was just two years old on that time and he never understand what is going on with him… All he knew was the pain he felt at almost time per day. Got a few of injections and feed with medicines. He almost spent his times with tears and a lot of pain. He felt scared and sad at all time because he realize that he cannot go to play at the playground with another children, he cannot eat his favourite food like fried chicken, French fries because of doctor’s advice.

He don’t want others to see his face. His self-esteem become low.
He scared if other children will laugh because of his physical and his face.
He knows that everyone will talk about him.
He tend to sit alone and watched the other children playing without joining them.
My parents and I realize that. We always support him and make him confident with himself especially in front of people.

Before the end of 2010, Praise to God that my little brother got healed from his disease. But it doesn't mean he was fully recovery. He must still takes the medicine in pills form continuously and it was about 33 pills (take for three times) taken by him per day. 

Good News From God

On 30^th April 2008 around 6am, my alarm was ringing as I must to prepare myself to school. But on that morning it was little bit strange because I didn’t heard my mom’s voice. Either my dad’s. I’ve get out from my room and went to the living room. The lamp in the living room were turned on but nobody were there. I went to my parents’ room to find there, the door was opened but the both of them were not in. Seems my siblings’ school uniform already prepared but the iron board was still stand there. I call my mom and my dad picked it up.

“Where are you?”

My first question.

“I’m at the clinic, accompanying your mom. I forget to call you, your mom already give a birth.”

I was veeerrrryyy excited but the only word that get out from my mouth was “Ohh really.. Okay.” As usual everytime I’m with my dad it was like I’m having a conversation with a minister. So simple and, such a formal.

My dad continued, “It’s okay just get prepared to school and don’t forget to have a breakfast with your brother. I’ll fetch you later”

I had my school uniform with a big smile on that morning, imagine my youngest sibling’s cute face. That morning was my happiest morning as I was the most excited to see my sibling, new born baby since my mom was pregnant. 

After the school day I spent my day by sitting beside my mom and my new brother while thinking the name that will given to him. The day on that day was like a good news from God. 

Arif Sufyan, 30th April 2008
Your existence was pleasure welcomed by everyone

His existence in my family was such an amazing gift from God. His age range with my younger sister was about 8 years. That’s why we felt soo excited!