13 Weeks+ 11th Feb 2012

At the time or writing we have just returned from our latest review visit with the team at the Evelina, this visit entailed some video footage being taken of Robbie doing some basic things. The tasks Robbie had to do involved sitting as still as possible in a chair for 40 seconds, standing and facing different directions, then walking in these directions... to be fair he seemed to manage this without any issues, Robbie seems to like Wioleta the teams therapy assistant and had a big smile for her, and the day was improved even further with a visit from both Kylee and Hortensia, who had simply popped in to say hello to us all. It is small gestures like this that make the team so personal to the patient and their family, you really get that welcome and “We care” feeling from them.

Then it was on to see Sarah and Margaret for a quick chat on how things were progressing, fortunately there were only a couple of queries we had, one being Robbie’s quite intense emotional outbursts and the second simply in relation to a possible further reduction in his medication.

On discussing our primary concern, and I shall explain briefly the concern, it appears to be that since the DBS Robbie has been prone to what I can only describe really intense displays of emotion, a couple of examples I would give, is he will really have angry outbursts on occasions where it seems he is really affected by some form of red mist, and it is like he really loses control of his temper, in a similar fashion we have found if he becomes upset he can really cry quite hard and again he is very difficult to console during these episodes. Don’t get me wrong these episodes only last a minute or so, but he can become very difficult to handle during these infrequent outbursts... 

Margaret spoke on this and when she said about having to remember his abilities having changed drastically since the surgery, it dawned on me this may well be the case, he has had years of frustration where he was unable to do many things his friends were doing, and suddenly he has all this new found freedom it may all just be a bit overwhelming for him at times, and maybe he is releasing many emotions in one go, frustration, delight, excitement etc etc etc, as this isn’t a frequent problem and these outbursts are very short we agreed we would monitor it for the time being, and discuss again if it gets to be a real issue. (this seems to occur only at home at this time, so again my instinct is there is some level of control within Robbie that he isn’t letting this happen outside of home)

Our next discussion looked at Robbie’s medication, the last drug (Sinemet) gradual withdrawal had gone without issue, and my sights had now turned to attempting to reduce Robbie’s tablet taking even further. My initial thoughts were to ask if we could now take him off of Trihexyphenydil, however Margaret thought it would be best to focus on Gabapentin reduction. Margaret asked about Robbie and any pain he may feel at any time, and I confirmed he had not complained much at all in the way of pain caused by Dystonia since the DBS, and thus we agreed we will start a Gabapentin reduction losing one tablet once a week until his 3 a day dose reduces to nil... so three weeks today we should be Gabapentin free (fingers crossed), however in the event there is any pain we can just start the tablets up again.

Once again, with our current luck the weather did its best to dampen our spirits, with freezing fog experienced on our drive down to London, snow whilst we were in London, and black ice on the route home... so it was a bit of a slow (better safe than sorry) drive both there and back but we made it without incident. The weather cannot currently dampen our spirits with this little guy making so much progress...

Robbie has had a minor increase of power in his right implant, as when he runs or tries to move quickly a slight dystonic posturing is present, hopefully this will help to correct this problem, albeit it really isn’t a major problem whatsoever, it is all about fine tuning now. Might be best that I advise (for any of you that may experience this in the future) when the setting was increased initially Robbie’s hand went into a firm dystonic posture, Sarah immediately asked Robbie “Are you ok” to which Robbie stated “Yes”, however it was quite clear to see his hand had become postured, and Margaret asked if he felt “pins and needles” in his arm, I don’t think Robbie quite understood what this meant, however then the team said “Does it feel like there are ants marching up and down your arm” to which Robbie responded “Yes”, the setting was immediately adjusted down a bit and things went back to normal including the hand posture. To be honest I found it a bit scary at the time, however on reflection it helps you to realise that any changes made are reversible with a further adjustment, so in the event you are subjected to this don’t be alarmed an adjustment is always possible.

Overall things are still really going well, and the swimming lessons and learning to ride the bike are our short term goals, Robbie is thriving and we are all so happy with his progress.