Wednesday, March 7, 2007

Nystagmus

Two Sundays ago, on 25th February, 2007, my baby suddenly developed a rare eye disorder called Nystagmus. I was so devastated. On Monday, I brought her to see a doctor. The doctor confirmed that my baby had Nystagmus. He said that her eyes will be permanently in that involuntary moving condition. My heart was so heavy when I went home that day. On Tuesday, my husband and I brought her to see a paediatrician at a private medical centre. He was the paediatrician who checked on her during birth. He said the same thing to me. I was feeling more and more down from that moment. The paediatrician refered my baby to the ophthalmologist in the same medical centre. So, my husband and I brought her to see the ophthalmologist on Wednesday. He did an eye scan for my baby. First, they put in eye drops to dilate her pupil and then did an eye scan. It was so heart-wrenching to see her little eyes being forced open by using a retractor (a wired peg thingy). Her eye scan results came back normal. There's nothing abnormal inside her eyes, the ophthalmologist said.

Both the paediatrician and the ophthalmologist agreed that a brain scan should be done to check on her brain. My mum, however, insisted that we see the ophthalmologist in the General Hospital first to get a second opinion. She helped me arranged for an appointment, so on Friday, we brought her to the General Hospital and waited close to 3 hours. The ophthalmologist there did the same thing. They dilate her pupils and did another eye scan, similarly, using a retractor to force open her little eyes. Poor thing, she cried and cried so loudly. The results came back normal too. So, they prescribed a brain scan at the end of the month.

I am at ends. I had been searching through the internet non-stop since the first day to read and find a cure. Every time, I read some of the websites that says that this condition will remain for life, I felt more and more depressed and desperate. I had problems controlling my emotions. Even while searching the internet, tears kept on blurring my eyes and I had to keep wiping them away. I could not sleep in the middle of the night when I woke up to feed her. I had no appetite to eat even though I was hungry, so I put the food in my mouth and swallowed it with plain water. I kept praying that God would heal her fast. I kept searching and searching through the internet and while most websites said that this eye disorder is incurable, I find comfort in reading a testimonial from a parent that said that Cranial Sacral Therapy helped healed their son's Nystagmus. I felt better. From there, I kept on searching to see where this sort of therapist can be found. I want very much for my baby to heal completely.

My aunty and uncles overseas were very helpful in helping me to find information, people and doctors who have treated Nystagmus before. I had also asked their help to find people who can perform the Cranial Sacral Therapy. I found a few in Singapore and my aunty had helped called them up to enquire. My uncle is abit wary of this therapy as it is not a mainstream treatment method and asked me to only use it as a last resort, as there is a need to consult Western doctors first. My aunty then found two Paediatric Neurologists in Singapore, who might be able to check on my baby. She also found a Chinese Physician who has treated Nystagmus before, but I was not sure if the Chinese Physician healed or improved the patient's condition. But then, it may take weeks or months, according to the Chinese Physician.

I felt stronger. I have to be strong for my baby. I started to eat more so that I can be stronger. For the past few days, I had been weak but after stuffing more food, I got my energy back. I pray to God everyday that he will guide the doctors to heal her.

My husband and I are flying to Singapore this weekend together with our baby to have the Paediatric Neurologists check on her. If a brain scan is also prescribed, we pray that her brain is normal and well. We will decide further whether therapy or treatment by the Chinese Physician is necessary from there.

Please pray for my baby.

1 comment:

RadhaMohan said...
This comment has been removed by the author.