Zahra and Nephrotic Syndrome - Day #1

I'm not sure how to write about this, or how to break this news. Everything happen too fast that I'm not sure if I can digest it. But I think I'm doing ok now...

It started last Tuesday when I noticed a puffiness with her eyes..it's normally a sign of allergic, and the night before she had home-made Tenggiri fishball soup for dinner and I'm not sure what cause the allergy because she's ok with the fish. Since there is no itchiness, only the swollen face, and she's perfectly like usual (eat, play, poo poo macam biasa) I decided to wait until 2 days. On the 3rd day (Thursday) the face still puffy and everybody around me is saying that she is gaining some pound, hence the tembam-ness. But it looks not normal to me, so I decided to take half day on Friday and went to the normal clinic where she got all her injections.

The doctor said the puffiness it's not normal and the best guess is Nephrotic Syndrome (NS) and we can confirm it from blood and urine test. He signed a referral letter to Tropicana Medical Centre (we picked the hospital since it is the nearest) and I was praying so hard it's all fluke, only common allerginess, not this so pelik nama tak pernah dengar. I was all calmed and contented at first but when the nurse handed me the referral letter and asked me when is my due date for the second baby, I burst out and cried non-stop. This is too..sudden..

So we straightly headed to TMC and see the soonest available paed. Zahra's first paed (she was born there) is Dr Pria but she's on leave. We said anybody will do, no need to on-call, we waited for a while and ushered into Dr Anushree's room. After checking all the puffiness, she also said the same thing, the only way to know is via urine and blood test.

Zahra had her first blood test taken (where she cried her lung out) and we were given a pee bag (it's like a plastic bag with sticky opening to tap at the private area) and were asked to encourage Zahra to drink water and pee. But another problem arise as she refuse to pee because she's aware with that plastic bag thingy. Since nothing much we can do, we decided to go home and wait for her to pee.

Kesian Zahra, she was so sad after we took some blood from her and keep on crying whenever she saw the plaster on her hand. She even slept without having lunch - sedih/penat sangat :(. I tapped the plastic bag on her and got her pee around 3PM but she was on diaper that time so all the pee spilled and absorbed into the diaper. Then I tapped second plastic bag and let her roaming around diaperless and got the second pee around 5PM and for the first time in my life, happy dapat kencing anak, can? Both of us went "Alhamdulillaahhhhh Zahra dah kencing" and was very excited, quickly change her and rushed to the hospital to bring the sample. Coincidently the doctor also called because the blood test result came out.

The moment we reached hospital, I gave the pee sample to the nurse for lab test and went into doctor's room where she explained that the blood test result leads to NS but it has to be confirmed with the urine test. We were so positive and said what if the urine comes out clear.. Dr Anushree said we'll be stucked for a while and need for more urine sample before can conclude the result.

After half an hour, the lab test came out and it's positive Zahra has Nephrotic Syndrome :(

Hmm how to cerita eh..NS ni apa.. hmmm... ok in another term in Bahasa Melayu, it's called buah pinggang bocor. I knowww..it sounds scary right? It is indeed scary and serious, and we were shocked to life, I mean, takde sebab takde ribut or whatever, suddenly she got it right?

It happens when a virus attack your body, then naturally your body will produce antibody to fight the virus. But in Zahra's case, the antibody produced is overridden, more than it needs to kill the virus, so after the virus gone, the antibody sees the kidney as enemy and eating the thin membrane cell which lead small hole from the kidney which leak the protein from being processed. And that's how it's interpreted as bocor :)

This disorder can be determined with the level of protein found in the urine and less protein count in the blood cell (because it's thrown out). So Zahra's protein in the urine is 4+ more than the normal level and the count in the blood is less than 4+.

The low protein in the blood cell also cause edema - water retention because the blood cell unable to hold the water, and that explains the puffiness and swollen body/face.

The only way to treat it, is by being on medication for 3 months (ideally) with corticosteroids where it will supress the antibody, hence stopping it to attack the kidney and the hole in the membrane cell will heal by itself. This is a very straight forward case, about 90% of it. Kalau more complicated will involved a lot of thing including kidney biopsy..touch wood :(

The side effect of this treatment is, when the antibody is surpressed, Zahra will be exposed to other health issue as the antibody is low to fight it like common cold or fever. And if the first corticosteroid doesn't help, she has to take higher dosage of steroid and this is not good for her, especially if taken on long term.

You know how I see drugs, I rarely give Zahra ubat, ni kena bagi steroid pulak *nanges* and asked the doctor if we can just let it be and will it pass over time. Apparently it won't go away..the antibody will keep on eating the kidney, then the hole will never close and this will lead to kidney damage.

Zahra at TMC. See her swollen eyelids..

We had to take second blood test and urine test on the second day (last Saturday) for more accurate result before starting the treatment.

I took it very well in the doctor's room but during the night when watching her sleeping, I couldn't help it but cried so hard. It happens too fast. And kesian Zahra, with the puffiness especially on the eyelid, she's having problem to see something (eg: watching TV) and she will keep on squinting her eyes and blinks a lot =,(

And still in shocked. Macam takde notice. Terus jadi.

According to Dr Anushree, NS is quite common but I don't know how doctors defined common. I never heard of it and when I googled it's 1 out of 5000 kids akan kena. It's not that common right? Anyway I asked jugak what triggered it, diet salah ke, environment ke..she said nothing, it simply picks anybody it wants. Virus - overdrive antibody - kidney attack.

I couldn't help it but asking inside my heart why you picked Zahra...because she is so small...kesian dia.. but what to do. This is just a small test Allah gave us.. and InsyAllah we'll sail through this.. There will be a lot of trips to the hospital for urine test and maybe couples more time of blood test..

And from bottom of my heart, I just want to ask my reader to pray for her well-being as soon as possible. Just let it be a simple, straight-forward, not complicated Nephrotic Syndrome... Makan steroid tu - the body response - hole closed - sihat walafiat :)

Thanks...

And may Allah bless you too. Ameen..