Zahra and Nephrotic Syndrome - Treatment and Overall health

It has been 2 weeks after Zahra is diagnosed with Nephrotic Syndrome and 12 days on medication.

So far we can see improvement on her body change. Her swollen face and body already gone, only big round belly due to the steroid. Her urination also started to frequent, around 4-5 days after on medication. One thing about NS patient, they don't urinate like normal because the

water went to the other part of the body, hence the swollen. Overall, her body is responding to the treatment, Alhamdulillah..Alhamdulillah..

I still remember, on the fifth day, her diapers are heavy with urine 3x more than usual (before she is sick) and siap leaking lagi. First time leaking ok, I'm not sure how to react at first, I mean, does it a good sign? Or too much urine is not good? So I contain my excitement until we met the Paed and she said, it's goooood!

She is given 25mg x 5ml Prednisolone (corticosteroid) to surpress the antibody and 1.3ml Zantac for gastric. The Prednisolone is too strong for her stomach, so she has to take Zantac first to coat the stomach from Prednisolone effect.

Prednisolone is a controlled medicine. We had to wait about an hour at the pharmacy to get this because the pharmacist had to pound it upon request.

Actually we have two choices, to give this raw pound which is very thick and bitter x 5ml x 1 time a day or give Zahra the pre-mix one which is super sweet x 10ml x 3 times a day. We chose the 1st option, not because I care about the sweet sugary thing, but I know Zahra, susah betul makan ubat. I rather go through the hassle and screaming once a day, not THREE! Dr Anushree said, we'll try the bitter one first, if she rejects it for few times, we'll try the sweet one. And if still rejects it, she has to be warded.

On the first day I gave her the Prednisolone, she vomits it out, like a shower. But I think it's partly my fault because I gave it too sudden, right after she drank her milk. I tried to mix it with guava and apple juice, Peel Fresh punya tauuuu..so sweet, but can u imagine the bitter taste still lingering around and she rejects it. I tasted it a bit and went.. no wonder she doesn't want it..

On the second day, I was a bit clever hehe.. After I gave her the Zantac, I let her play loose..then fed her porridge, wait half an hour, then I force the bitter medicine. Thank God she didn't vomit this time but she cried sooo hard and refused everything I gave her after that. I gave her sumijelly pun taknak! Then I tricked her to have a bath (boleh main air!) and she calmed down a bit.

Then the few days after that, she's taking the medicine with her babysitter and she's getting better and better, but still crying while slurping the medicine. Only it doesn't last long, after done with the 5ml, she stops crying. Good girl.

Only that, whenever she sees we shaking the Prednisolone's bottle, she will say "No no no no noooo" and like want to cry. Kesian betul, but what to do baby, sorry sayang.. you have to take it :(

Since this is long term treatment, we don't have to go to the hospital everyday, only last week we had to go twice since she still in early stage to have the blood pressure checkup. All I have to do is to collect the first urine in the morning, then dip with the protein stick and check the color and track the reading daily.

The urine bag, to tap at the private area.

It's a bit hard for me to use the urine bag because Zahra still sleeping early in the morning and we are rushing to work. I can't wait for her to urinate and all so the Paed gave me an idea to put cotton ball in the diaper. So after I finished my Subuh prayer, I'll change her diaper and insert some cotton ball, then around an hour after that, I check the diaper and squeeze out the soaked cotton ball and test it.

It's not that accurate but good enough, only in the weekend we will use the urine bag.

The protein sticks. Can you see the reading, it's 3+ yesterday, yeay!!! Previously semua still 4+.

Below is the tracking I made:

Date	Result	Weight	Dosage
19 June 2011	4+	10.1kg	25mg x 5ml
20 June 2011	4+	10.1kg	25mg x 5ml
21 June 2011	4+	10.1kg	25mg x 5ml
22 June 2011	4+	10.1kg	25mg x 5ml
23 June 2011	4+	10.0kg	25mg x 5ml
24 June 2011	4+	10.1kg	25mg x 5ml
25 June 2011	4+	9.8kg	25mg x 5ml
26 June 2011	4+	9.5kg	25mg x 5ml
27 June 2011	4+	9.5kg	25mg x 5ml
28 June 2011	4+	9.5kg	25mg x 5ml
29 June 2011	4+	9.5kg	25mg x 5ml
30 June 2011	3+	9.4kg	25mg x 5ml
01 July 2011	3+	9.4kg	25mg x 5ml

We also need to weight her because she supposed to loose some weight as the heaviness is from the water that is retained under the skin, not the real flesh.

Other complications that comes as side dishes with this disorder and treatment is, Zahra will have high cholesterol because the liver starts to produced some of lipid (fats) due the to protein loss and we can already see the impact. Last blood test shows that the cholesterol is above 10, whilst normal is maximum at 5. But the Paed said nothing to worry about, it will be temporary, once NS gone, it will stop. Hopefully her body can take it with no extra medication to counter the cholesterol pulak.

As for the medication, she might develop high blood pressure and we are monitoring it now. So far so good, her blood pressure is at bay.

We also have to carry this steroid treatment card everywhere we go because a normal cold and fever or infections can be very dangerous to her. Alhamdulillah, she hasn't been countered with any other sickness til now. Zahra is all happy and active, only occasional stomach bloated due to the steroid. Please please please God, let her stay healthy until she finishes the treatment...

The steroid treatment card

And this is her latest pic, yesterday morning.

Crying because I off the laptop. Pagi-pagi nak Mickey Mouse! So drama. Mana larat nak layan, mommy nak pegi keja ni hehehe. Abaikan rumah bersepah, tu semua baju baru basuh tak lipat :P

Her being cheeky in the car. At NKVE.

We are going to see the Paed tomorrow morning and will do full lab urine test. Hopefully the reading is going down for real and can get the exact protein count.