I brought Charlene to NUH on the MRT. She was not very happy and on the way to NUH, she started throwing fits in her pram and she kicked so hard she almost flew down her pram. After that she went to sleep (she's already tired having woke up at 7am).
The neurologist after seeing Charlene's past EEG records told us that her brainwaves are abnormal all the time. He then told us plans for the future. Firstly, he explained that we should wean down phenobarbitone since it is obvious that this medicine is not effective in helping her. He said that if the medicine is effective, her brainwaves would not have looked like that. The withdrawal of phenobarbitone may increase her fits. But on the positive side, if the medicine did not help much in controlling her fits in the first place, the removal of it would help increase her muscle tone (meaning she will be less floppy and better able to control her muscles) and increase her awareness and alertness.
The neurologist also witnessed a few episodes when Charlene is sleeping. He said it looks like fits to him. But after I explained that we see less of that when Charlene is on the cpap machine. He thinks that Charlene may be hypoxia. So he plans to let Charlene do a EEG the next time we see him in a month's time. The EEG will be done with and without the cpap machine to see if there is any difference in her brainwaves. Also, the EEG will also reflect whether the withdrawal of phenobarbitone has made any difference.
Also, Charlene's 2 other anti-epilectic medicine is below dosage for her weight. We would have to decide which medication we want to increase the dosage. Increasing epilim has less side effects and would be easier to monitor (blood test to check that the liver is fine). However, potassium bromide seems to be more effective in controlling her fits.
We thank God for opening the doors for us to see the NUH doctor. We do not know how things will turn out to be but at least the doctor is trying and does not view Charlene as hopeless.
No comments:
Post a Comment