Wednesday, September 14, 2011

Zahra and Nephrotic Syndrome: The Side Effects

It's been awhile I didn't update about Zahra's condition. Alhamdulillah, she's doing well now, but still on the high dose steroid treatment. Up to date..it has been almost 3 months. 3 more days to go in fact.

Her urine dip test is fluctuating between trace and negative since 21 August but Dr Indon said, it's normal for her to have traces in the urine. So trace reading is acceptable. We have to be cautious when the urine raise to 2+ and have to give her antibiotic in any case the rise is because infection - hence her body is fighting it and the kidney 'koyak' again due to the antibody attack and we have to do immediate blood test to see the protein level in her blood if the urine stays at 2+ after 5 days taking the antibiotic.

Facts of the day: The medicine is called prednisone now since it's in tablet, instead of prednisolone - liquid form.

Dr Indon decided to taper off the steroid starting this 17th Sept for a month.. It won't be 5 tablets/day anymore. It's lowered to 4 tablets, alternate day.. but, if only the urine stay at trace/negative. InsyaAllah..

The protein count in her blood also in the acceptable range now, Alhamdulillah.

Here is her blood history:

Date / Urine Level
Protein
(64 - 80 g/L)
Albumin
(35 - 55 g/L)
Cholesterol
(<5.0 mmol/L)
19 June 2011 / 4+
41
2110.5
1 Aug 2011 / 4+
56
32
N/A
13 Aug 2011 / 3+
57
26
6.9
24 Aug 2011 / Trace
60
31
6.8
6 Sept 2011 /Trace
65
35
6.4


She will have another checkup and blood test this 11 October and most probably I already delivered babyG by that time. Hopefully everything is well, her protein is enough in the blood and the urine maintained no protein.

Talking about side effects, we definitely can point one or two by now. However, not all children will have the same side effects, but this is what we've been told and seen:

1) Harder to sleep - the first dew days she is on steroid on the evening (3tabs morning, 2 tabs evening) she had a hard time to sleep. Average time will be 12 midnight! Then she can't sleep through til the morning like usual. Normally she will sleep until 7AM but now she will woken up around 5AM. Her sleep also not that sound and sometimes I can see she is a bit restless in the sleep.

2) Fine hair - She started to have fine hair especially in the forehead, upper lip, and behind her back. However, I read somewhere that the hair will fall off when she's not on the medicine anymore.

3) Mood swings - She likes to bite even though nobody kacau her. It's like sometimes tiba2 dia rasa irritate and will bite anybody next to you. But lately the biting has lessen, maybe her body already get used to the steroid.

4) Stunted growth - This one hard to tell as she is still small, but according to the growth chart, she was 90% tall before and now fall to 50% (average group).

5) Calcium losses - One of her teeth chipped, but this one not sure because of the ubat or simply cavities. Hopefully sebab I tak gosok je la :(

6) Moon face - it's a term for chubby cheek. She has triple chin now and very chubby cheek due to the steroid. It will go off after 6 month out of the medicine. Tapi sometimes sedih tau tengok muka dia, sebab nampak tak ori sangat chubby tu. Memang obvious chubby sebab ubat :(


The moon face. Zahra having lunch - spaghetti with broccoli and tofu soup

7) Digestion problem - She starts having constipation after few weeks on prednisone. Most probably due to the 'heaty' from the medicine and not enough water. We tried giving her a lot of fruits and water but she still have the constipation and the bloated stomach. Her stomach will be very hard during evening due to all of the food and gas. Dr Indon prescribed her pro-biotic supplement, it's in capsule type, so we open the cap and mix the powder with the milk every night. Alhamdulillah, the bloatness went away and her stool is softer now.

And other rare side effects that might happen is like cataract problems, muscle weakness, osteoporosis, diabetes, etc.. Hopefully she doesn't encounter with those nasty side effects. Aminn aminn aminnnnn....

Talking about giving her medicine, she will struggle every time and MrComot has to hold her tight, and I will pinch her nose and push the syringe inside her mouth, press it on the tongue and make small shots until finish.

She will cry during the 'forced' time but tell you what, Zahra is a very good girl, she never throw the syringe or smash anything beside her.. Every after medicine time, I will say, 'Zahra, dah doneee yeayyy. Clever girl! Nahh..Zahra bawak ubat pegi letak kat sink ok'. And she will hold the syringe and ask MrComot to carry her and put the syringe nicely in the sink. NICELY OK. Not even throw it like marah or what. I feel like crying...seriously. She is such a strong girl...


Zahra with me waiting for the blood test result at SDMC..having her afternoon nap. I forgot to bring the stroller, poor little one, had to sleep uncomfortably like that.


Overall, she's doing fine now. Hopefully everything will run smoothly and according to track. I can't imagine her being sick anymore..kesian her small body. Stay strong sayang, we can go through this ok. Mwah!

4 comments:

  1. Take care Aan!! Let me know when the time comes.

    ReplyDelete
  2. Semoga semuanya dalam keadaan baik untuk Aan sekeluarga...

    ReplyDelete
  3. Thanks fitri! Mommy fara!

    Feens, of course i will tell u. But hope i sempat jumpa danish before that

    ReplyDelete