It was with a bit of reservation Robbie and I headed off for this trip, we both knew the long trek that lay ahead, and somehow as everything was relatively okay just now it all just seemed a bit pointless. To be fair we know there was slight deterioration in Robbie, through both his posture which had been dystonic when tired, and the issues with this tongue rolling and speech difficulty again this was only experienced when tired. It would have been very easy to just put this down to being overtired, and shelve as not really a problem, however one thing I have learned along this journey is to keep a journal of any changes in your child, believe me it is best to write things down so when you do meet the team you can raise all areas of change, which the team will look at and investigate, and hopefully treat where possible.
We set off on the journey, again we both found it very difficult to leave the rest of the family, and knowing the chances were the DBS settings were going to be altered, here I would like to talk a bit about my personal thoughts, feelings, worries or concerns regarding this. Personally I find it very worrying when I know a change is going to be made, I know deep down if a change is made which causes any problems it is just a matter of changing the settings back again, however I think in the knowledge we are over 400 miles away from this team there is no way to get back quick to see them if there are any issues. I worry in case there is any pain for Robbie (which is quite strange as he has never complained of any pain at any of his previous settings changes, so this concern has no reason to be there, however the thought still eats away at the back of my mind for some reason), I worry they will change something and not be able to get him back to how he was... I think many of the thought processes behind these concerns are it is still very fresh in my mind how just how bad Robbie had become just prior to his DBS indeed I still have old videos, which are painful to watch, that bring home the stark reality of how harrowing a journey this wee lad has been on, albeit, we now have a much, much better standard of life, I often ponder if this DBS treatment were not available how bad would Robbie have been now, indeed this treatment has been a miracle in our eyes.
In cases of the dystonia being the primary condition I would 100% recommend deep brain stimulation, even to an extent in secondary dystonia's although the success rate in these cases is not quite so effective, and the results seem to be very variable.
So we arrived in London at 6.30pm only to find all the car parking spaces at the Evelina were taken, nightmare should this happen to you by the way, although we did manage to find a space after waiting half an hour or so, and it was then off into St Thomas's hospital to pick up the keys for the accommodation at Gassiot House. Word to the wise Gassiot is currently undergoing development, so the entrance has been moved from where it originally was, and there is scaffolding and the likes all around the area, nothing that would hinder a wheelchair user or anything like that. I really can only assume it is the exterior of the building they are developing as nothing inside the building or sleeping quarters has changed. The rooms are the same as ever, in the lounges they have TV's (which I have to say on every visit I have been on, and in all the different rooms I have stayed in I have never found one that gets any kind of reception... (word of warning best to take a DVD or two if you actually want to watch anything) We usually take down the laptop with a couple of films on it and sit in the bedroom and watch these to pass the time.
We had some dinner, which had been taken with us and as it was a nice warm evening went for a walk along the embankment, where we went through the now usual ritual of going to hear Big Ben chime, and a walk along past the London Eye, Robbie enjoys it...
Robbie usually has problems dropping off to sleep at Gassiot, I think this is a mixture of both the travel boredom, and not being able to burn off any energy sitting so long, and the unfamiliar being away from his routine and family, however on this occasion after tossing and turning for an hour or so drifted off to sleep.
In the morning it was over to the Evelina for our 9.30am appointment with the complex motor disorder team, and Violetta and Hortensia were first to meet up with him, as this is the 6 month review the physio, OT and speech therapist all wanted there bit of time with Robbie, to run some of the assessments which are carried out with the child pre DBS, and are then repeated in full at the 12 month post DBS. The tests were not as extensive as the original assessments, however they targeted any areas of concern to ascertain the extent of any issues raised. They also benchmarked a few areas for stability, agility, mobility in order to produce a report which will compare pre DBS to post DBS 6 months on. The changes are really remarkable however they need these formal assessments to accurately measure how Robbie has moved forward.
The 6 minute walk test (which you may well be familiar with if you have previously been for assessment was also conducted) again the results were measured and will be compared against previous results.
Lesley the speech therapist also took time to have a short review with Robbie, although I think this may well have been prompted after me raising concerns with the issues with his tongue rolling, and the difficulty he was having pronouncing words when he was tired, as you would expect despite a morning of work in the gym doing physio, there were no issues with the tongue whilst Robbie was with Lesley!, we have been advised to try and capture a quick bit of video footage when/if the tongue rolling problems start again, in this event we are just to send a copy of the footage to Lesley so she can analyse what is happening during these episodes.
Again as in previous assessments Robbie is filmed doing several tasks in order for the team to take the time to analyse his performance, and this also allows them to compare where improvement is shown, and also to establish potential target areas for improvement.
Whilst conducting the assessments as a parent you will need to sit with various members of the team and discuss progress, and you will be asked to mark out of ten several areas on mobility, speech, etc etc etc. Hortensia also went through the goal setting targets which you will discuss and agree pre DBS, and assess your personal thoughts and scores on how close you feel your child is to achieving these goals.
Around 1pm, we finally got through the tests (and this was quick as Robbie had simply flew through these), and it was time to meet up with Margaret and Sarah, indeed again they went through any changes since the last visit, and they deemed that an adjustment would indeed be made, they actually turned on a second part of the implant (from my brief understanding there are 4 points (electrodes) on the implants and Robbie had just had the first electrode stimulated on each side thus far, this time they decided they were going to activate a second, and also increase the stimulator strength slightly. Robbie had an issue at his last adjustment when the left hemisphere electrode was increased his left hand clenched and he described as what felt like "Ants marching up his arm" effect and the electrode was returned to it's original setting... On this occasion both sides were increased and the same thing happened again, however Margaret turned it down a notch and this issue resolved itself (this was still able to stay at a slightly higher setting with no adverse effect)
So overall the trip was absolutely fine, my worries and concerns were once again unfounded.
One story I want to briefly touch on, a close friend of mine Alison Birkin, who I am sure many of you know had asked me to tell the team about her daughter Chloe now taking independent steps (Chloe also has dystonia and until a recent change to adult services as she was over 16 now, was under the complex motors team at the Evelina) I told Margaret and Sarah of the news and they were so excited to hear of this, indeed Sarah immediately sent an e-mail to the team to advise of the update regarding Chloe, and there was a genuine feeling of pride and genuine happiness amongst the team, I have since spoken to Alison and she has said Margaret had e-mailed her to say thanks for the wonderful news... This I believe really rings home how dedicated this team are and that despite the fact Chloe is no longer under their care, and is now a former patient, the team are so excited and pleased to hear this wonderful news... a more dedicated bunch of professionals, and caring people than I have ever met in all my years on this earth.
Finally the only thing left for us was the journey home during which Robbie sang most of the way, a short video attached (why should I have to suffer this alone :) ). No but to be fair it really is a good feeling to be going home, back to normality. Robbie is happy and that is number 1 in my book, this little guy is my biggest hero and always will be... enjoy the video... :)
