An update of the Mr D – The Bushfire

Hi guys,

So to give you a little update on Mikey, we are currently awaiting a trial arrival of Medicinal Cannabis.  Once we trial him on that, we follow with an EEG as the neuros are very interested to see the results also.  It is a very grey area this MC business and is not as easy as the media would like us all to believe.  Just because it has been passed through legislation, does not mean we have access to it, or more importantly, that doctors have access to it and can prescribe it to us.   Oh no, we are like many other parents across Australia, having to access it on our own means.  (You figure it out!)

However, we’ve been researching this stuff for quite some time now, and the people you may have seen on shows like Insight, Compass and Q&A and the recent SBS doco are the ones that we speak to.  Let me tell you, it’s a small world out there for rare syndromes.  Mike D is known throughout the different portals of health channels that we have been dipping our toes in!  We are very fortunate to have doctors support us in this decision.  I mean, come on, we are disconnecting/removing half his brain, it’s not like it’s a light decision!

The plan is to have an EEG, following the MC and see what it has done (if anything!) Medical Cannibas is another form of medication that we haven’t tried, so for one last shot, this is it.

This is what it comes down to – these are the facts we have been told by our incredible Paediatric Neuro team in Brisbane as well as the incredible Paediatric Neuro team in Melbourne.  You see, we have them all on our side.  There is no time for egos in this game.  These health professionals are about getting the best results for the children that are under their care for these debilitating, catastrophic forms of childhood epilepsy.

What we know, is that the damage has been done.  Just as we were told in the recent Hemispherectomy Conference in March, to the recent consult we had with our Brisbane neuro.  I hope it makes sense to you too.

Think of Mikey’s condition as a Bushfire.  The Bushfire came through when he was 10 months of age and did most of the damage then.  It pretty much destroyed his left hemisphere.  As he was so young, his young brain naturally began to reorganise itself by rewiring across to the good hemisphere (his right hemi).  This is why over the years, we have seen strength in a lot of his gross motor skills, fine motor skills and development in speech and concentration.

However, the problem we have, is that the bushfire is still smouldering.  The left hemisphere is showing far too much activity with the amount of medication he is currently on and is interrupting his good hemisphere from making great leaps of progress.

We want to give his good hemisphere the best possible chance of development, so what do we do?  We trial him on more drugs – once you hit 6 medications, you are pretty much done – you are just swapping names around.  Or do we decide on the surgery?

So this brings us up to now, to April 2017, where we are excited, terrified but determined that this next step, with the guidance of our very special doctors, is to move forward with preparation of surgery. mik

We have pre-surgery assessments due to begin next month.

We will keep you posted!

MrD & Co 🙂

 

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