I have two boys: the elder one a 5-yr-old who inspired the setting up of this blog, and the younger one a 22-month-old toddler that is the cute boy you see in the photo above.
His name is Koh Kang Heng (许康恒), because we wanted him to be healthy (健康，永恒). This is because Luck Heng the elder brother has been suffering quite a lot from ill-health, mostly due to the fact that he is attending pre-school, where we all know is a breeding ground for all sorts of germs and viruses to spread.
Kang Heng grew up pretty ok, but around the time when he was six months old, we noticed a little action that he seem to be doing frequently. He was bobbing his head once in a while, as if his neck muscles suddenly decided not to support the weight of the head. At our regular 6-month check up with the paediatrician, we mentioned it to him. However as the doctor could only imagine how it looked like from our description, he suggested it was just a weak neck (which is pretty common among 6-month-olds) and told us to just monitor.
As Kang Heng grew older, hand movement started to add to the occurrences of the head bobbing. Some people who see it thought it was rather cute (as with everything a baby does) and we did not think very much of it. At the same time, he was still not learning how to sit on his own, and mostly liked to laze on us whenever we carry him. We attributed all this to his 'laziness'.
Gradually, we started to see that the head bobbing and hand raising movements might look like something that is out of the ordinary. After a quick search on the Internet, we learnt of the condition known as Tic, a sudden nonrhythmic movement or vocalization involving discrete muscle groups. It did not look too serious, and some equate it to hiccups. As such, we just thought of leaving it to the 12-month checkup with the paediatrician.
At the 12-month checkup, while describing the symptoms to the paediatrician, the attacks came. After witnessing it for himself, the paediatrician immediately referred us to a neurologist paediatrician for follow-up check, as he suspects this is a form of infantile spasm.
Luckily, we were able to get an appointment with the neurologist the following day. We went back to research on infantile spasm, and the outlook did not look very good: the wikipedia page says that statistically 5 out of every 100 children with that do not survive beyond 5 years of age. Both Yoke Ping and I went to the neurologist with a heavy heart, and I remember I cried as I drove on CTE that day.
The neurologist looked at Kang Heng, and order a EEG Test. This is a test where we had to place multiple electrodes on the scalp of Kang Heng to record the activities of his brain wave. It was really a heart wrenching sight to see one's offspring with all those electrodes attached to the head, but what needs to be done, needs to be done.
The nurse recorded the brain waves under various conditions: awake, strobing lights, lights, dim lights, sleep etc. The most difficult part was to get Kang Heng to sleep. After some hours struggling in the EEG test room, we finally was able to get the recording done. The neurologist studied the report, and told us a slightly better news than we expected. The worst case scenario for such a EEG test is that it indicates disturbed brainwaves in all parts of the brain. In the case of Kang Heng, it seems to be localised in certain portions of the lower brain on the left and the right side. The diagnosis we get is "partial onset seizure".
To be sure about the diagnosis, the neurologist ordered an MRI test the following day. As such, the next after was spent trying to get Kang Heng to sleep on command again, since if he was awake, he would not keep still enough for the imaging in MRI to be captured properly. Kang Heng is one who will struggle a lot to keep himself awake, if he does not want to sleep when I try to rock him to sleep. The doctor gave some sedatives to make it easier for Kang Heng to go to sleep, but he kept on fighting it, shaking his head vigorously to keep awake. After some hours of struggling, he finally fell asleep, but both Yoke Ping and I were also exhausted. Finally the MRI was captured properly.
We had to go back to the neurologist a few days later for the MRI report. It turns out that the MRI report confirms the results of the EEG test, just that while one suggests that it is the malformation on the left temporal lobe that affected the right temporal lobe, the other suggests the reverse. It does not really matter. What matters is that we now know that both sides' temporal lobes had some malformation, and that is give rise to the seizure attacks.
I asked the neurologist does the malformation mean that Kang Heng will lose some functions in future. The answer is that the left and right temporal lobes are responsible for the language (or speech, I cannot remember clearly) functions of a person. However, due to this concept known as 'plasticity', the brain can try to use the 'good' portions around the malformed portions to try to compensate. The pre-condition is to keep the seizures in check such that the brain will stop using the malformed portions of the brain and start to learn to use the 'good' portions of the brain. Being a geek, I used the analogy of marking bad sectors on a harddisk and using other sectors around it to help myself understand this better. And the good news is that plasticity is higher the younger the person is. This means that as long as we are able to keep the seizures in check, there is a good chance that Kang Heng will be able to compensate for the loss of functions due to the malformed part of his brain.
Thus starts the regiment of giving Kang Heng the medications twice day. We started to give medication as instructed by the neurologist. The seizures still came at the rate of around 1 per day. Dosage was adjusted, and after a few days the frequency of the seizure was stretched slightly to 1 per 2 days. The cycle of adjusting dosage and sometimes medicine repeats, and along the way the frequency of seizure also fluctuates up and down. Sometimes it is once for 4 days, sometimes it is a series of 1 seizure for 3 consecutive days. Along the way, we simply followed the neurologist's advice to vary the dosage and also switch medicine when he finds that the original combination did not work well on Kang Heng.
These 2 video will give you a better idea of what happens when a seizure attacks.
He would usually start with being very daze and will not respond to our prompting. Then the area around eye brows and sometimes the nose will flush red. When the seizure comes, he will stare in space while the hands raise in the air for a few seconds. When he is in a sitting position, his head will bob (at around 0:12 position in the video).
We finally found one combination of medication plus dosage that successfully dragged the time between seizures to 4 weeks recently, however after that on 2 consecutive days he had 2 mild seizures with one twitch each.
While treating the seizure, the neurologist also pointed out in the first few visits that Kang Heng seemed to display traits of developmental delay. Specifically, at 12 months Kang Heng was not able to sit independently without external support. He recommended a physiotherapist to us, and we took up the advice.
The physiotherapy sessions started sometime in Mar or Apr 2009, and we really observe marked improvement in Kang Heng's gross motor skills over the months. By Dec 2009, he was able to sit, pull to stand, stand independently for a few seconds, cruise along furniture and take 2-3 steps independently. For a child with development delay, we think it is tremendous improvement, we have heartfelt thanks to the physiotherapist that helped us through this journey.
Other than gross motor skills, Kang Heng's speech and cognitive skills development are also delayed. We are now exploring starting speech therapy for Kang Heng, since he already starts to babble some unintelligible sounds. We have also queued up for a vacancy in one of the early intervention programmes, but still waiting.
My wife and me has accepted that Kang Heng may be slower in everything when compared to kids of the same age. However, luckily he is a rather happy kid, and we just let things take their own course. One thing for sure, every little progress he makes, that was easily taken for granted by parents of normal children, is a lot more appreciated by us.
