The Past, Present and Future

Life has been quite full on for us lately. Our son who is on the BioMed journey had dental surgery  in early September which he came out of extremely upset.  The cannula was still in his hand when he woke and he hated that.  He was saying “Help me Help me”, wanted to hide under the blanket, was cold – it was very distressing for everyone.  I’m so glad my husband had taken the day off work to come with us.  He calmed once we got in the car and started moving.

The following weekend I had a miscarriage at 11 weeks during which I lost a lot of blood and ended up in shock so I was in hospital for a night. The weekend after that my husband had a job interview interstate , which unfortunately he didn’t get.  On top of that he’s been working on a new project which has taken up basically all his free time which inturn, means no free time for me as I am full time child carer.  Anyway, our son recovered from his surgery well and I am still building back up but we are getting there.

We have been continuing on with the S-adenosyl b12 shots for a few months now. Our son now marks the spot with a whiteboard marker for the Emla cream to go on and then once it has done its magic (and sometimes even before) we do the shot.  He insists on standing for them now for some reason. Although he is familiar with needles now, we still can’t get a blood test done.  He was terrified last week when we tried to get a test done so we gave up to maybe try another day.

I’m not sure if its making a huge difference as yet.  I must go back and compare some videos and my notes from before we started them. I know that he definitely doesn’t seem to go down/backwards in the days before he is due for it.

It had become apparent lately that when he couldn’t answer a question, he would go to a default of saying what he was thinking about or a line he knew by rote from a game or movie. It was as if he had too much information to process or couldn’t gather his thoughts and put it all together to process it and develop an appropriate response. I asked him the other week where the words were getting mixed up and he said “In my head”. I had a feeling this was the case as opposed to them getting jumbled on the way to his mouth. Many times our son would hit his head out of frustration in not being able to get his point across or make his thoughts understood. In discussion with our Biomed Dr we have decided to introduce Bethanecol.

It is believed (my take on it anyway) that information comes into the brain from the differing inputs and senses and then travels across the brain a few times to process and come together.  When these streams of information are travelling at different speeds, they cannot come together and therefore it all becomes a big jumble of information.  Bethanecol enables these streams of information to travel at the same speed.

The results from using this drug can be astounding. Non verbal children have been speaking in sentences within an hour of the first dose.  This is one of the reasons (besides a possible adverse reaction of which to my knowledge there has been none) that the Doctors like to do the first dose in their rooms – its so rewarding to see such an immediate change in a child. I should have it by the end of the week and we are booked in for his first dose next Wednesday.   I can’t wait.


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