Friday, July 20, 2012

Fighting Henoch Schonlein Purpura Disease

There were many times I wish to turn to this blog and document my thoughts. Most times only thoughts rushes by. And heart wearies with emotions. There were just no words to describe. Only feelings and mostly pain. So I guess there are things where only the heart knows. And not the mind.

Sometimes I wonder if Mia will ever read my posts here. If I will ever allow her to. And will she understand, forgive and accepts that I am only human. I wish she doesn't see me as a superhero. Although I try to be strong for her. I just hope it doesn't come across as something she wants to or have to turn out to be.

I may be strong. Actually I do think I am. I don't think many people who had gone through my life would turn out to be like me. It was a hell of a journey. And it is not common at all. But that doesn't mean that I don't let myself go sometimes. There are many moments when I'd cry myself senseless at the world. My world. Once again, I am only human.

Less than a month ago Mia was diagnosed with Henoch Schonlein Purpura disease. It started when her left ankle was swollen without reason. We thought she must've sprained it since she is in the jumping phase. We had not witnessed a fall. One Sunday (June 17th) afternoon she said her leg hurts. The same night before getting ready for bed, she said she cannot walk. Her ankle was swollen. Rushed to Pantai Hosp and did an x-ray. The doctor said there were no traces of fracture so they'll treat it as a sprain. They arm us with pain-killers and bandaged her ankle. She was also referred to an ortho for a follow up. The following day the swelling subsided and she can walk again. Occasionally she'd complain it hurts. She also develop skin rash which I had thought from the bandages but strangely it was on both lower legs. I had assumed she had scratched them so bad that the other leg had also suffered the rash. On Tuesday she had a fever. On Thursday (June 21st) we went for the ortho appointment in the morning. And she was clear to go to school in the afternoon. On Friday (June 22nd) afternoon when I had collected her from school, her right knee was swollen, it was warm to touch. Her teacher said it happened after she woke up from her nap time. She wasn't doing anything physical.

Once again we rushed her to the hospital. They had admitted her the same night. She had x-rays done to ensure there were no bone fractures. A different ortho was on call but he was doing surgery at the time. So he had requested her to be admitted and monitor the swelling. They were concerned if the swelling gets bigger, it might mean she has an infection and will need surgery to drain it as soon possible. At around 1am the ortho came to check on her and said the swelling doesn't look too bad, it might be another injury and treat it as a sprain. Again. They wanted to monitor her further but by next day the swelling went down and she was already jumping about. She also told the nurses she wants to go home. The nurses checked with the ortho and he cleared us to be discharged. No pediatrician was involved. This was on Saturday.

Her rashes came and go. Someday worse than others. We applied lotion. The following Friday (June 29th) she had flu and cough. This time we decided to take her to her pediatrician instead, Dr Altaf. We had intended to get flu and cough medicine. However, once we were in the doctor's office, I poured out everything and all details from the beginning when she had a swollen ankle til present. He immediately does a routine check-up and checked her skin. That's when he said, "I think she might have something called Henoch Schonlein disease". I know my heart just stopped for a moment. I didn't realize she was having a  type of disease. He scribbled the name on a piece of paper. Told us to monitor her urine over the weekend, if her urine turned so dark and there are blood stained urine or in her poo, get her admitted immediately under a pediatrician and they will treat her kidneys. It meant the virus had effected her kidneys. No one know how some gets the disease while other don't but for Mia's case it is highly due to her low blood count (since birth) that had made her more susceptible to infections/viruses. We have to monitor her urine for about a month to ensure she is all cleared from the disease. It is common for the disease to re-cur, but we do not want it to re-cur too often or her kidney wouldn't be able to take it and will be damaged. So the school and us will have to monitor any sudden swellings of her joints.

Last Wednesday Mia had started Beaconhouse. She is adjusting pretty well and had her first school outing to Beryl's Chocolate Factory. More days now I feel she deserves to laugh out loud til our jaws hurt and our tummies aches. Because she deserves more of those days now than ever.

I will try my best to be strong for you, my little one. Although there are days when I too crumble and fall. But  for those little time when I become vulnerable, it was to build courage and made me stronger on most days for you.

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