It is so nice not having vomit bags in my toilet being used all the time now!!. Prior to surgery I bought them in 50 lots. Big improvement since surgery was done in the vomiting and small seizures. We hope the improvements keep coming. First week in Feb we have MRI EEG Endocrinology etc. follow up at the Lady Cilento hospital in Brisbane. This is all post brain surgery follow up etc. After that hopefully not much medical stuff to do for a while it will be wait and see to see if he continues to improve seizure wise in terms of severity and frequency. We are currently weaning Phenobarb. after 2 years on it. We are worried about the psychosis affects of long term usage so we are taking him off. He will be left on Zonegran though for the time being. Doctors havent ruled out taking him off all seizure medications at some point. The thing is they all have side effects. at the moment he has a terribly red itchy scalp. If they are not controlling the seizures it is not wise to stay on them long term. We have tried eleven. after 3 they deem you to be refractory to seizure medication. All I know is that a point in his journey is going to come where we will need access to medical cannabis products. I hope that we are amongst the first patients in Australia who may get access to a legal supply. If not we will be faced with a dilemma. We will wait 12 months from brain surgery to make our decisions because at that point we will know what we are left with seizure wise.
Posted on: Fri, 23 Jan 2015 07:18:21 +0000
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