At 3 months old - She was treated for broncho pneumonia (lung infectin) with Pseudomonas sepsis. Warded at ICU for 14 days. She had blood transfusion. Stayed at normal ward about 3 weeks.
At 4 months old - She was treated for nosocomial pneumonia. Admitted for a week.
At 5 months old - My baby was treated for multiple absesses at the back. She was noted have hepatosplenomegaly with anaemia and thrombocytopenia. Full blood picture show leucoerythroblastic picture. Immunology function show low phagocytic function and granulocyte also low.
At 6 months old - Was referred to immunologist, and suggestive of CGD - Chronic Granulomatous Disease.
At 8 months old - underwent endoscopic biopsy. Complication bleeding warded about a month.
At 13 months old - My baby was treated for pneumonia, neutropenic sepsis. Did the bone marrow aspiration (BMA). But the results is not conclusive because dry tap. Warded a month. She had gone through many time blood transfusion. Stayed in the ward another one month.
At 14 months old - She had poor feeding, fever, gum bleeding and fast breathing. This time doctor suggested to do the chemo port insertion because she had many infection previously and difficult to get the IV line. Second time BMA and lymph node biopsy was carried out also. After the operation she had bleeding tendencies at BMA site, chemo port site and lymph node biopsy. This caused my baby required blood transfusion almost everyday.
From the lymph node biopsy results, the doctor conclude my baby had HLH disease. From that day my baby was referred to Paediatric Oncology and also start a new episode of challenges that My wife and I face.
It was very hard to accept the fact that my baby had a RARE disease to fight. When I asked doctor she told me that the previous cases only 5. And it was quite long because doctor seem can not remember the previous cases very much.
At 14 months old - She had poor feeding, fever, gum bleeding and fast breathing. This time doctor suggested to do the chemo port insertion because she had many infection previously and difficult to get the IV line. Second time BMA and lymph node biopsy was carried out also. After the operation she had bleeding tendencies at BMA site, chemo port site and lymph node biopsy. This caused my baby required blood transfusion almost everyday.
From the lymph node biopsy results, the doctor conclude my baby had HLH disease. From that day my baby was referred to Paediatric Oncology and also start a new episode of challenges that My wife and I face.
It was very hard to accept the fact that my baby had a RARE disease to fight. When I asked doctor she told me that the previous cases only 5. And it was quite long because doctor seem can not remember the previous cases very much.
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