Summary of Janelle's Medicial History

Our daughter Janelle Gan Jing Xuan was born on 16 August 2008 in Thomson Medical Centre through natural delivery with the help of vacuum suction. She is now coming to 11 months old. She is a full term baby delivered in week 37 at the weight of 2.7 kg. Both of us (the father and mother) are not blood related.

She developed mild jaundice on the 3 days after delivery but had subsequently recovered after a few weeks. The only treatment she had was sun tanning in the early morning and late afternoon for 5 to 10 minutes after discharging from the hospital.

When she was 5 days old, she took a liver profile test Bilirubin, (Neonatal) and the result was 12 mg/dL. She also had a metabolic screening. There were no abnormality detected for both Amino acid and Acyl-Carnitine profile. We also follow closely for all her vaccination and child development assessment with our family general practitioner around our neighborhood. In general, all her growth development had been normal. She had her last immunization Prevenar Pneumococcal on 27 Mar 2009.

3 days later on 30 Mar 2009 (7.5 mths old), she had her first seizure at home when she was about to take a bath at around 1pm. According to her grandmother, who took care of her during the day mentioned that she had been all the while fine in the morning. Her eyes up rolled, both her hands and legs became rigid and the body curl slightly. Her face was expressionless. There was no noticeable jerking of the body. The seizure lasted for about 10 – 20 seconds. She quickly recovered without any cries or showed signs of discomfort. Her grandmother carried on giving her a short bath and the next episode took place when she was dressing up. It was also a short seizure for about 10 seconds.

At around 4pm, she was sound asleep in the sarong and all of a sudden there was loud high pitches scream from our neighbor’s kid (downstairs). She went into a seizure. The hands and legs were firmed. Her eyes rolled up. Her head was slight tilted upwards and her body was rigid. It was similar to the early afternoon’s fits. There was no noticeable jerking of her limps and body. This time the seizure lasted slight longer which was closed to a minute. The moment she recovered, she bust into tears and seems to be in great discomfort.

We admitted her to Thomson Medical Centre where we were then referred to KKH. On our way to KKH at around 8pm she had another episode of seizure (4th) and this time was slightly longer for about 3mins. We dashed her to a nearby clinic along the road. She was immediately injected with rectal diazepam where in a short moment she recovered and also followed with loud cries for a long period.

On the same day, at around 10pm during KKH admission she had another short seizure which lasted for 10 seconds. She did inpatient CT Scan, blood test and urine test. All results were normal, the root caused was unknown, and with no further seizure for the next two days, she was discharged on 1 April 2009 with a follow up appointment with Dr.C at the neurology clinic a month later on 30 April 2009.

The next day, on 2 April 2009 late morning, Janelle had a first seizure after the discharge from KKH. It was also similar to the initial seizures described previously. We admitted her to KKH at once. She had another round of urine test, blood test for metabolism, lumbar puncture, EEG (1 hour – with awake and asleep stage, but no seizure was captured), MRI and video EEG. In the video EEG, 3 episodes of seizure were captured. Dr mentioned that all results were normal except for video EEG. It showed abnormal electronic brain ware at the back of her head. She was later diagnosed with infantile epilepsy and was prescript with oral medication Phenobarbitone. Nitrazepam was added on a week later as Phenobarbitone was unable control Janelle’s seizure. Furthermore Janelle’s blood test presented high reading for Phenobarbitone. It was at the maximum drug level.

We stayed in hospital for about 2 weeks for monitoring the effect of drug intake. After a week on both Phenobarbitone and Nitrazepam, Janelle was still having seizure. Carbamazepine was then introduced to replace Phenobarbitone. After the changed of drug, there was improvement on her seizure frequency, and after 1 day of seizure free, we were discharged from KKH. We were given a medication plan of increasing Carbamazepine and decreasing Phenobarbitone. The medical advise was to visit the hospital should there be a prolong seizure of more than 10 minutes.

On 22nd April, she was taking 6ml of Phenobarbitone 2x (morning and night) + 1ml of Carbamazepine 2x (morning and night) + ½ tablet Nitrazepam (nightly). Janelle was still having seizures every 3 days with a cluster of 8 - 10 episodes. Drug dosage was adjusted weekly. She is now currently taking 5ml (morning), 4ml (afternoon), 5ml (night) of Carbamazepine + ½ tablet Nitrazepam (morning and night). The frequency of seizure reduced to one to two episodes every 3 to 4 days.

On 25th May 2009, during a follow up appointment with DrC, he requested to have a blood test for Lactate on Janelle, as one of the inpatient blood test results showed abnormal. However, the result taken that day was tested normal.

Both of us are aware of the long terms used of AED drugs and are very concern with her future development both physical and intellectual. We have observed slow development in her gross motor in terms of crawling, balancing her movements and speech. When Janelle was 9 months old, Dr referred us to rehab center at KKH for Occupational therapy (monthly), Physiotherapy (monthly) and speech therapy (half yearly). She is now 10 months and 2 weeks old. She is able to sit without support for only a few minutes and yet to reach out for things.