16 Weeks Today 26th Feb

Hard to believe it has been 16 weeks now since Robbie’s DBS, time really has flown by, and his recovery has been truly remarkable to say the least.

Robbie has been on a gradual reduction for more of his daily medication, and is now officially no longer taking Gabapentin, a medicine designed to combat neuropathic pain (pain relating to damaged nerves) the great news is over the last three weeks he has reduced these from taking three a day, down to two a day week two, and eventually down to one a day last week, and as of Friday last week this medication ceased, and happy to report he has not mentioned any pain throughout this time (with the exception of week 1 where he complained of back pain a couple of times, we are putting this down to over exertion as opposed to Dystonia related pain.) Fingers crossed this continues and this will be another set of tablets now removed from his daily intake.

So, in essence since the DBS he has now stopped taking Sinemet and Gabapentin with no adverse effects... We intend to leave as is for a few weeks and assuming no pain or adverse effects follow we will speak to the team about weaning him off his other medication Trihexyphenydil.

As mentioned in my last update, Robbie still can be very emotional, in this I do not mean so much easily upset, but more so very temperamental, when he gets angry or annoyed he still seems to “lose control” and will go absolutely ballistic for a short time, during these episodes there is little that can be done to console him, until he calms down a bit, then he will listen to reason and apologise for his outbursts. The way we are dealing with this is to take him away from the situation causing his angst, usually his angst is directed at either me or my wife (as we are mostly the one to say no to his demands) and normally if he has, for example lost his composure with say me, my wife will take him out of the situation, allow him to vent off some steam, then talk to him and let him see the error of his ways, alternatively if my wife is in the line of fire at one of his outbursts I will take him out the situation. Is this just Robbie developing his own personality, I am not 100% sure, however the other children in the house do become quite upset by this behaviour. When he does eventually calm down he will apologise for his behaviour.

Swimming is still proving a challenge for Robbie, he seems to manage quite well swimming on his back, he often needs reminded to use both his arms to drive himself forward, however when he gets it right manages really well (I am confident once this understanding sinks in he will crack this). He is now freely going under the water to retrieve hoops etc so his confidence is growing and growing weekly. Swimming on his front is a bit more challenging for him, but given time I am sure he will get to grips with this.

Robbie has even started taking school lunches again, (he previously came home in order to take his meds which he now no longer needs to take) we are keen for him to start doing this on a regular basis (currently he is there a couple of days a week) as this again further improves Robbie’s independence, and also gives him some real quality time with his classmates, in order to run around the playground and burn off some energy. Our longer term aim is to get Robbie taking school lunches 5 days a week, which will come with time.

As the weather continues to improve, we are looking to get Robbie back out on his bike, as he still has this “half peddle” way of going his bike (Stabilisers are still required) he seems to move the pedals 180 degrees, then pulls the peddles back up to push forward again rather than using the full 360 degrees.

Robbie’s wheelchair has now sat in the back of the car untouched since the New Year, to be honest I think it is more of a safety blanket now for us, it is always there just in case it is required.

Having read back over this update it all comes flooding back how this little lad was so dependent on his chair just previous to his DBS, and it makes you reflect on what his life was like then, in little over three months his life has been totally transformed, he is free to pretty much do as he wants now, he can walk, run, play, write, dress, draw, colour in etc etc etc without the constant fear of falling over, or the Dystonia preventing him from doing what he wanted his limbs to do. He is now free, this truly is remarkable and we all have witnessed what may well be described as a miracle happen before our eyes. The team at the Evelina made all this possible and we will be forever in their debt. I dread to think what Robbie’s life would have been like had he been born 20 years earlier, or left untreated, as he was really getting to be in a bad way prior to DBS.

To any of you going through a similar situation, my prayers are with you. Seek support, it is there if you look for it. You are not alone, and most of all always remember there is hope

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.

12 Weeks today – 31st Jan 2012

Robbie took his last dose of Sinemet on Thursday afternoon, making a big song and dance over the fact his tablets are reducing I exclaimed “No more sinemet for you Robbie", to which I got the response “I will miss you Sinemet” This was the first ever medication he was prescribed way back in the early outset of the Dystonia and he has had to take three of these throughout the day, every day for the last 2 years. Only Trihexyphenydil and Gabapentin are taken now, along with a course of 3 doses of Piriton daily to try and relieve the “itchy head” he gets most days (It actually seems to be honest he is aware of the scar tissue on his head and he just keeps scratching it, hopefully a habit that will subside as he gets used to it being there)

Robbie seems to be coming to terms with using a knife to cut food; he now wants everything uncut so he can use his new found skill. We have also had a major focus on Robbie’s eating his week as briefly mentioned last week he is a really fussy eater and would only ever eat a few choice meals, as his recovery continues we have an agenda to start pushing him a bit to discover and at least try new foods, it has to be said at this early stage this has been quite successful, and so far newly added foods to his diet now include, mash potatoes, chicken, gravy, pancakes, grapes and sweetcorn. Real progress is apparent and Robbie seems to enjoy trying (at last) new foods.

We also got Robbie a new bike this week in an effort to get him trying this new skill, we have added stabilisers, however have also experienced a few falls during the first few attempts on this, and he is finding the concept of getting the pedals to move 360 degrees at this time difficult (I have added a video to show this) however he is happy enough to persevere on with this challenge, I am sure he will get there eventually.

Swimming lesson this week was an interesting event, Robbie seems to be able to swim on his back without too many issues, although co-ordinating all 4 limbs in unison is still a bit challenging for him, it is however very early days and I think given time to practice this will improve, swimming on his front is proving a bit more difficult for him as he has a stronger side which means he keeps pulling in one direction instead of a straight line, again I am sure it is something that will improve with practice... he has cracked floating on his back though (something I cannot do). It is only his third week so maybe I am the one not showing enough patience, regardless, we will persevere with this challenge and we will get there.

We are still continuing down the road of pushing Robbie to be more independent in many ways, he no longer gets lifted into the car and climbs in by himself (that said I am always right behind him in case of any falls etc) he manages most tasks unaided just now with the minimum of assistance, however we are always close by in case of any difficulties.

One slight difference we have noticed is when Robbie becomes angry or upset he seems to be really intense in his mood, and it is like a red mist descends and he loses the plot completely, during these rare episodes he becomes very difficult to calm down... this could just be a tantrum type of thing with his age, however a situation we will be monitoring very closely.

Other than the above it has been another really good week, and Robbie goes from strength to strength with his improvement in all areas...