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Thursday, 29 March 2012

29th March – 20 weeks on

So here we are now 20 weeks post op, and all is relatively good with Robbie, we have now removed Sinemet and Gabapentin medication with no adverse effects whatsoever.



We had trialled removing Robbie’s last medication in relation to his Dystonia (Trihexyphenydil) however this seemed to bring on a bit of dystonic posturing again, the idea was to reduce the medication by half a tablet a week for a four week period, however by week 2 of the reduction we noticed he seemed to be struggling a bit with posturing and we decided to pull back on the withdrawal for the time being. This said we have seen a lot of really good weather the last few weeks, and whenever the weather is fairly reasonable you can rest assured Robbie is outside playing from daybreak to dusk, and he literally never stops, thus we do wonder if the posturing has been caused by the drug withdrawal, or just simply down to Robbie physically burning himself out on a daily basis. Our intention is to attempt the withdrawal again in a few weeks, maybe reducing the dosage a bit slower than we originally attempted... update will follow on the progress of this over the coming weeks.


Robbie is now confidently riding his bike (including 360 degree peddles), albeit still with stabilisers, again the next challenge come the summer will be to remove one stabiliser to see if he copes with this, then in the best circumstances hopefully the second one will come off. He is still attending his swimming lessons and again he is progressing with this weekly, he can swim well on his back, although still has quite a few issues trying to coordinate his hands when swimming on his front (as Robbie says his bum keeps sinking when he is on his front) again this is still a learning curve and he really gives this 100% effort.

You may remember I mentioned Robbie’s extreme mood swings in the last entry in the blog, the good news is these still exist, but in a much lesser state at this time, these seem to have subsided and he is now certainly more willing to listen to reason when the red mist descends.

Robbie has also had his first haircut since the op as he has a full head of hair and wanted spikes again.



At school Robbie is doing really well, his written and drawing work is coming on in an excellent fashion, his fine motor skills have improved dramatically, and he has much more control over writing implements, he loves taking part in gym although we have had a few tumbles and falls, but probably none more so than any other seven year old. He has even asked to take school lunches every day this week which is a major step forward...


Again, this little lad has changed for the better so much in this last twenty weeks it is still all a bit overwhelming, when you look at videos of pre DBS against the freedom he has now this boy’s life has turned around in a miraculous fashion... and he (and all the family) are absolutely loving the moment.
We have a six month review coming up in early May, and a full breakdown of what this entails will be recorded in the blog from this date.

1 comment:

  1. Brilliant to read all the positive progress . Thanks Dougie . Sorry things have been a bit potty our side of the world. We had family stay then a house move but I do keep up with this blog and wonder about how your wee man and family are doing. we have fresh struggles , Lilys telling us about every tiny spasm which is new and on top of her bigger whole body spasms. We certainly have an all too clearer picture of how much she is dealing with invisibly . Still , neuros Monday , although I admit they don't seem to have many solutions , scribble notes of our observations and off we go again. lily talks of Robbie and his progress and loves to see his pictures here. Take care and well done to you all , amazing leaps and achievements

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