Annual Review Update... Angry!

Hi Folks

Been a long time since the last update... but wanted to renew the blog effort after a few requests to hear an update on Robbie and his DBS.

Probably best to take you back to his annual review with the complex motor disorders team, back in November 2012. At this time all was going really well, Robbie was doing great and to be fair not struggling too much with muscle contractions and problems of that ilk... However one major problem area we have encountered since the success of his DBS was a real issue with extreme mood swings. 

This issue really was very trying for the whole family as we experienced these "Red Mist" moments on a very regular basis, and it seemed once these moods took affect there was no way of calming Robbie down. He would tantrum, lash out and become extremely agitated and downright abusive (for want of a better word). 

This issue had grown so much, we did at times question is everything okay, is this years of frustration at his condition now coming to the surface and manifesting as anger or sadness?, Is this something as a family we could cope with?, was this abnormal behaviour unique, or could we find others who may have experienced similar episodes with their children? Was it a side effect of drugs he was taking?.... So many questions, and unfortunately at that time no answers...

Having raised our problem with my local occupational therapist she suggested it may be useful to see the child psychology team, and referred us on to them (Note this was November last year, and we have our first appointment with them next month - quite a waiting list!!!)

In the meantime I explored the net (something I really don't recommend) to look at the medication Robbie was on. I managed to find a link with mood swings in relation to one medication he was taking... Trihexyphenydil.  Later after discovering this and speaking to a few close, personal friends I discovered they also had experienced problems of a similar nature with this drug.

Whilst at his annual review we discussed the medication and I suggested I would like to try and reduce the doseage to establish if this had an effect on his moods, they agreed to trial this and we discussed and agreed a very gradual withdrawal. The team were keen to listen to my suggestion, indeed embraced the idea, to cut a long story short the withdrawal did help his moods, however over the months the withdrawal of the medication, did also affect Robbie in the way of a return to some dystonic posturing... Gee, fix one problem and another appears ! :) It was a bit like having to find a fine balance between posturing and mood swings.

The team also discussed how the area of the brain targeted in DBS controls movement, emotions and planning... Now the strange thing is you couldn't but feel was it a case of once the movement issues were being controlled, had other problems with Robbie now come to the fore... Alas it transpires this was not the case. I think because of the constant focus by a child on getting movement right, I cannot help but feel the emotions and planning are areas that have never had the chance to mature and develop within the child... this certainly seems to be the case with Robbie... Alas we are seeing advancement in these areas now as we, the school and medical team all work together on these areas... (Still something I feel other parents should be aware of after their child's DBS)

His main achievement since the DBS is his love of swimming, this has helped Robbie immensely to develop and strengthen some of his weaker muscle groups, he recently competed in the Fife disability swimming championships  and won a couple of medals for his efforts. He loves this sport and was fortunate to meet a local paralympian Craig Rodgie (Pic below - Robbie's hero) who swam in the London paralympics...

Watch this space as I will be updating the blog with Robbie's 18 month review update in a few days... and promise to those who have asked more regular updates...

Again I need to mention the Facebook group... The Evelina Children's Hospital Dystonia Support Group and the people who are amongst it's members... These people have helped me through a lot of rough, dark times, they are great to ask any questions to, as most have been through, or have children on their way to getting DBS...

I think the most important understanding we all take is, we are not alone, there are other individuals out there feeling the same fear, frustration and worries about our children. 

DBS has certainly changed Robbie's quality of life, but again recognise not all are quite so fortunate and see less in the way of improvement. 

18 MONTH REVIEW UPDATE WILL BE PUBLISHED IN A FEW DAYS... promise :) 

4th May 2012 - DBS 6 Month Review

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... :)

21st April - 23 weeks post op

Hi all, been a few weeks since the last blog, however as we run up to Robbie's 6 month assessment I thought it best to provide all with an update.

It is with a bit of a heavy heart I write this blog today, as over the last 10 days or so, Robbie has complained of an ache behind his right knee, initially we just surmised he had maybe been overdoing it a bit, however vigilant as ever have kept a very close watch on this, as he was complaining most mornings of the pain, we decided about a week ago to use the pain scale chart for kids to assess if this was getting worse or staying quite level. 

Unfortunately Robbie has slowly during the course of the week moved from a 1 to a 5 so it would appear as though the pain does seem to be getting gradually worse and this I believe would tend to relate to his dystonia (indeed Robbie even stated the pain was "coming back again to how it used to be")

I have e-mailed the team at the Evelina to advise them I have reintroduced his Gabapentin medication, you may recall this is a medicine designed to combat neuropathic pain caused by nerve damage. Fingers firmly crossed after a few days this medicine will start to reduce Robbie's pain. (It certainly worked well for him prior to DBS so one can only imagine it will help to alleviate this current pain)

This said Robbie is still very upbeat and he seems to be able to not let this affect him, he is back down for his 6 month review in two weeks and we look forward to seeing the team again.

Robbie has now taken school dinners for the full week for the last fortnight and he is really happy to do this, he is tired in the evenings by the time he gets home, however still manages an hour or so out n his bike (He has travelled absolutely miles around our back garden)

Although the blog starts off on a bit of a down note, we are in no way disheartened, he is still able to do much more than he was able to do prior to his DBS, his school work is coming on leaps and bounds, his confidence continues to grow, his fine motor skills are really good, and he really is a happy little chappy just now... (he is even off to his friends house for tea on Monday on his own - something that certainly would have never happened a few months ago)

 

One other area for discussion with the team when I go down is his speech, this has never previously been affected by his dystonia, however we have noticed as and when Robbie gets tired (usually early evening) he has a tendency to roll his tongue, and sometimes this affects his speech (It appears as though this is an uncontrollable action) It may well be the case the dystonia is now affecting this area, however only happens when he is over tired, and not a daily occurrence... again we will continue to monitor this situation.

An update will be coming in the next blog on how the 6 month review went, what it consisted of, and of course any updates on the wee mans progress...

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.

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... 

11 Weeks Today 24th Jan 2012

We are now 11 weeks since the operation and Robbie is continuing with good progress and becoming more and more confident, that said we have had several bumps and bruises along the way, as you would expect from most, if not all 6 year olds... as you can see by the bump in the picture below he gave us all a scare in the middle of last week where he banged his head so close to the DBS scar, Robbie got over his initial fright quite quickly, then continued to run and play tig... so obviously his fright from the fall was much lesser than ours.

Swimming lesson 2 was on Monday and his movement in the water seemed much more relaxed this week, still a little way to go before he is independent in the water but he is progressing well. He is moving freer in the water, however you can still see slight dystonic posturing in his hands when trying to move all his limbs together, I am sure as we practice this more and more he will gain control over these movements or alternatively find his own way round these issues and adapt his own unique style which he has had to do in most things in life.

Robbie had a concert at the school yesterday for Burns day (Hence the blog is a bit later this week as I wanted to add some footage (Robbie can be seen on the far left) this was again a very proud moment as this was the first time Robbie hadn’t needed his wheelchair for such an event... a real achievement for him.

Other than this Robbie’s 7^th birthday is just a few weeks away (14^th Feb – yes our Valentine’s day baby) Initial thoughts are to get him a bike and attempt to get him out there riding around again (a steep challenge he hasn’t been able to do this since he was 4 and the dystonia struck) I am confident with the right encouragement and praise Robbie will achieve this again... especially so, given his recent new confidence and mobility and fine motor skills improvement still being shown.

There is also development in the dressing himself front, in that we are now really pushing Robbie to dress himself of a morning, this is improving well and he is also getting much faster than he could originally do, so despite us sometimes feeling we are being a bit hard by making him struggle on, it is in his own interest we are doing this, hence it will continue.

We are also going to be focussing on Robbie's fussy eating over the next few weeks as he is currently very difficult to cater for, as he likes a very few specific items, this is set to change over the next week or so as we do intend to at least make him try some new things in order to broaden his food likes... I dare say this may be a bit trying for all concerned however this again is about Robbie's long term benefit and as such we will persevere on with this. Having spoken to a few friends who have experience of dystonia it has been suggested that different textures of food may be an issue, hence we will try to keep food textures much the same with specific meals, looking forward to him trying all these "new" foods.

Robbie is still doing well on his Sinemet reduction trial and we are mid way through the second week of this, so far really good and we have seen no adverse effects from the timed withdrawal of the medication, indeed on thursday this week Robbie will swallow what we will hopefully be his last ever Sinemet tablet (fingers crossed) and hopefully at our next review meeting at the Evelina, we can start looking at his next medication to be removed since his surgery... 

It does seem we are forever pushing Robbie on many, many fronts, however this is the case as we want him to be able to lead a good quality of life, again this wee lad is doing remarkably well and working with us to make these changes happen and learn new skills, and we pray this continues to be the case.

10 Weeks Today – 17th Jan 2012

A review trip to the Evelina was our main focus this week, we set off on the Thursday morning on our 450 mile trip to see the complex motor disorders team, the trip was calm and relatively straight forward, again we went a different route, one which pleasantly I would use again as it knocked nearly an hour off our usual journey time. (One good thing to come out of these trips if nothing else I have picked up great knowledge of B roads between Scotland and England)

Our overnight stay was to be Gassiot House yet again, and for all the building work and changes going on in and around the building there is no change to the accommodation quarters as yet, those of you familiar with this will know the script, i.e. kitchens lacking cutlery, crockery etc, a lounge with a TV that cannot pick up any reception etc etc etc... again though the accommodation is fit for purpose (albeit you are probably best to take a laptop to watch a movie on, and your own cutlery is always the safest option.)

In the morning we were to meet with Sarah Perides and Dr Jean Pierre Linn, and as planned the appointment went to schedule and commenced at 10am. We discussed a variety of subjects regarding Robbie and the excellent progress he is making, and it was decided due to this ongoing improvement there would be no change to the stimulator settings. Also discussed were a couple of things my wife and I had discussed prior to the visit, namely the orthotic splint he currently wears on his right foot, and also to pose the question was use of a helmet to wear whilst in school necessary.

First off we discussed the splint, the splint had been given to Robbie not long after the dystonia spread to his right foot, when his foot seemed to be twisting inwards and upwards (if that makes sense), this seemed to have corrected itself the day after DBS, and as the weeks passed seemed to have gotten straighter, so the question was asked “Do you guys really think he needs to continue wearing this” Dr Linn got Robbie to take his shoes and socks off and took him off down the corridor for a walk, and several minutes later returned to advise, he would like to see Robbie build some strength in his right calf muscle and it would be okay to lose the splint, this was a great feeling as whilst wearing the splint there were a couple of issues, Robbie, we noticed more and more, was becoming very conscious of the splint and was forever pulling his trouser leg down to make sure it was covered, and secondly you probably don’t appreciate what a financial burden it is to have to buy two pairs of shoes every time your child needs a new pair (as when wearing the splint the shoe sizes tend to different as was the case with Robbie), also, apart from the financial aspect you are very limited to the type of shoes you can buy due to the width of the foot with an orthotic splint.... Mum, Robbie and I were very glad to put the splint in the back of the wardrobe (hopefully there to stay) and trot off to the shoe shop on our return.

The next item for discussion was that since Robbie has found his new mobility he no longer is confined to his wheelchair within the school, the only exception to this rule was playtimes, when for his own safety it had been decided it was best to stick with the chair, as time has passed and he has grown stronger and more stable we decided the time was right to let him out to play at breaks, we were unsure whether this would be better with some kind of head protection in place, the team advised there was no need for protective headgear, and now Robbie has the freedom of the playground at breaks, It was quite funny to watch him when he returned to school after lunch on Monday, having the freedom of the playground, but a little unsure of what to do, sure that will change soon enough... One thing is for sure, you can see by his beaming smile he is loving this new found freedom.

Another area which was discussed at the visit was his medication, Robbie still has a habit of itching his scars, they seem to be still giving a bit of irritation, either that or it could be due to the fact he hadn’t had his hair washed since the op... either way Dr Linn has prescribed piriton to try and address this issue (not a large dose just half a tablet three times a day) On the positive side Robbie is currently still taking Sinemet, Trihexyphenydl and gabapentin tablets, Dr Linn has started a medication reduction programme for his sinemet, reducing the doseage by one tablet a day for the first week, then removing two tablets a day for the second week, until week three when he will be Sinemet free !!! We are closely monitoring Robbie to ensure this reduction in medication has no effect and we have been advised to contact the team in the event of any changes... so fingers crossed all goes well.

Finally we got the all clear for Robbie to be allowed to get his scars wet at long last, after the 8.5hr drive home we had a clear set agenda, first up a nice Chinese meal for our tea, then a big hot bubble bath, which Robbie soaked in for ages, lying back enjoying getting wet again... a treat which cheered the wee man right up, and he slept like a log our first night back, hair washed (and gel applied), well soaked and a full belly making the ideal end to a good review visit.

Robbie attended his first proper swimming lesson last night, and had an absolute ball, he managed extremely well, and we will certainly be back next week and on an ongoing basis... seeing small things like this make the dream a reality... Also at time of writing I have just dropped him off at school, I arrived in the playground and lifted him out the car and asked him what he was going to do till the bell rang, “I am going running” he announced in an excited voice, and sure enough as soon as I put him down he took to his heels and ran, visibly excited, even better still when he got to a group of his friends who were playing football, he just joined in kicking at the ball like he had done this all his life, this was amazing to see, and certainly something I never envisaged he would ever be able to do, but Robbie never failed to amaze me yet again... It would be true to say I drove out of the school gates beaming with pride in this little fella, with a tight lump in my throat, and a tear in my eye... DBS has made all this possible, and is something I would recommend to any child suffering from this condition.

9 Weeks today – 10th Jan 2012

Again another good week, with very few problems to talk of, in fact there have only been a couple of incidents this week on the negative side.

Similar to last week, we had an episode one evening where Robbie clearly experienced a slight relapse in that his twitching started again, and he again experienced problems with his speech (It seems as though his tongue is twisting causing him to have difficulty when he tries to speak) this episode came off the back of a really mild and unseasonably warm day, where his friend, a neighbour from over the road had come over and played with him in the garden for most of the day, the positive side of this is it is now very clear it is when he gets over-tired this seems to happen, as the same incident he experienced the previous week, was after a similar day where he had played hard most of the day, and he had exactly the same effects, after a good night’s sleep on both occasions all was normal again, hence we are not too worried by these episodes as it seems to be his body’s way of saying “I need rest”... I am sure as he grows stronger and fitter this will improve, however we will closely watch this.

The next episode we experienced which we haven’t seen for a long time was last night, when Robbie woke from sleep complaining of pain in his foot, when asked where exactly, he pointed to his right knee ??? So again one to watch, that said we are back at the Evelina on Friday morning so we will mention it to the complex motor disorder team... A dose of calpol seemed to be enough to calm any pain he may have been feeling and he dropped off to sleep after an hour or so.

On the positive side, when he woke this morning all seems to be well again, so again this may just be a tiredness thing, he is off back to school today after the Christmas and new year holidays, and he is really happy about this, he loves the school and is simply craving the company of his friends and teachers again... long may it last...

Charging is getting to be a bit of  chore for Robbie now, and instead of him now telling us he needs to be charged, we seem to be having to tell him on a regular basis he needs to charge his battery, (I think the novelty of charging has worn off a bit, however he has been told, if you don’t do it daily we will tell Sarah (from the CMD team who we see monthly) and she will give him a row, this seems to have the desired effect, but it just goes to show how complacent he has become with his new found freedom and improved mobility.

As stated previously we are back down to the Evelina hospital in London for his 2nd monthly review on Friday 13^th, which means we leave for London on the 12^th, with a stay at Gassiot House on the Thursday evening, Robbie’s appointment is at 10am Friday, and then it’s the long drive back to Scotland... My thoughts are firmly on what will happen at the visit, the question is will they adjust the settings (personally in my opinion the current settings seem to be working extremely well) however happy to leave this decision to the team who obviously have much more experience in this area than I ever will... I am just of the mind if it is all working well, don’t mess... but as I say this team have much more experience than me.

Overall improvement is ongoing and progress is very apparent, we are loving watching this little lad do new things, things he has never managed previous to his DBS, he is much more mobile, confident and outgoing... this journey has been absolutely miraculous to watch, and it is a joy to behold, currently we feel like the luckiest people alive.

8 Weeks Today – 03 Jan 2012

So here we are at the 2 month post op point in this journey, It has been another good week with the exception of one evening late in the week, last week.

Robbie continues to exploit his new found independence and there really seems to be no stopping him now, he had his first attempt at doing the dishes last week, something he could never have done post-op and he managed these so well, this is now his regular task (really no complaints there then)

As I said we did have one evening last week, where we got a real fright, and this was to prove to be a real wakeup call and serve as a stark reminder it is indeed the DBS which has caused the huge improvement in Robbie. To be honest he had really been active most of the day, more so than he is accustomed to, and I think tiredness could have played a major factor in this episode, we noticed he started getting quite stumbly again in the evening and we decided it was best to get him in the bath and get his pyjamas on, by the time he had got out of the bath and dressed, his dystonic posturing had returned with a passion, and he was really struggling to stop the involuntary twitches, indeed his speech also seemed to have been affected (something we had never experienced pre DBS)... On the positive side this episode didn’t seem to upset or worry Robbie, but it did cause almighty concern to us after seeing so much improvement over the last couple of months... Thank goodness when he woke in the morning all was well again and there has been no repeat of this episode as yet... It does suddenly enlighten you though the Dystonia is masked by the DBS and it is waiting there in the background.

We also routinely checked his battery etc just to ensure the stimulator hadn’t been deactivated however this was not the case, hence we can only imagine he had totally burnt himself out and the tiredness was a contributing factor.

We are back to the Evelina on the 13^th Jan so we will obviously mention this episode to the team.

Other than this episode things seem to be progressing really well, indeed Robbie has been out playing in the garden most days this week despite the cold, his little sister is absolutely loving having her brother back out playing with her again, and taking part in play... It really warms my heart to be able to see him doing these simple things again, they mean so much to us all now.

I have applied for a barge trip for Robbie in February, where will be sailing the seven seas (well the forth canal actually) but it should be fun, and will allow us to see if he likes boats and if so there is a longer trip available which we will contemplate when we see if he enjoys his short trip, it is good to start planning things we simply could not do before. We have also spoken to a local riding for the disabled group to see if Robbie can have a shot of horse trekking in an effort to find new interests for him... On top of this again he also starts swimming lessons next week... so things are really on the up and up, especially so when you think two months ago we would probably not have considered any of the above activities for Robbie, so yes DBS has definitely improved Robbie’s quality of life (Just means Dad has to be a taxi most nights of the week – nothing new there then)

After all the grief with the press last week, we had a presenter from Daytime TV show on the phone this week, asking if we would come down and appear on the show, at this early stage after being so overwhelmed with the press coverage we have declined the offer at this point due to the stress it would cause the family, we may revisit this option at a later date to raise awareness of the benefits of DBS... Very much a bit of in two minds after the press coverage letdown.

I would also like to finish and give a special mention to a little girl called “Chelsea” who today is going through her DBS procedure at King’s (I wish you guys the very best for her)

7 Weeks On – 27th Dec 2011

It has been yet another fascinating week recovery wise for Robbie, and a week also filled with a few mixed feelings for us as his parents...

At the outset of Robbie’s dystonia I found myself in the position where he had been diagnosed with a condition I was totally unaware of, and as I spoke to other people who have experienced the condition the common theme amongst them all was both the length of time it had took to reach a diagnosis, plus several also talked of having no prior knowledge of the condition, as such I had decided I wanted to raise awareness of the condition to the general public, this I decided to do via a couple of sponsored events I became involved in trying to raise funds for the Dystonia society, and also through the local press, and a small item on our local regional news... in the run up to Christmas the local reporter who I had dealt with throughout the whole process called and asked for an update, and obviously as we are currently seeing such improvement at this time the reporter asked if we minded doing a follow up to his story as the first piece had been post DBS, little did I know this story would hit the front page of the local press, and a fantastic piece was put out (which I am advised should be available on the Fife Today website later today 27/12/11)

So this was the positive side of the story, however at 8am the following morning the national press called and asked if they could do some photos etc as they wanted to feature Robbie’s story, I now understand what they mean about the press hounding you for a story (I am sure I spoke to around 10 reporters that day), and sure enough the following morning Robbie was featured in all the UK national papers (The Sun, The Daily Record, The Star, The Scottish Daily Express etc) This was really quite breathtaking to see all these pictures of Robbie plastered across all the daily tabloids and know we were getting the awareness out there, however they failed to hit a couple of actual points I wanted to get across about how this success had come through his DBS, and they also forgot to mention the great work the Evelina Childrens Hospital have done... and the Dystonia society never got a mention, all of these points were covered but the tabloids seemed to decide these were irrelevant ?

Also, and maybe more importantly so, I think I had an awakening with all this coverage about how would Robbie feel about this, just now he just takes it in his stride and gives a kind of disinterested smile when you show him the articles, but I have this concern at the back of my mind will he still want this attention as he gets older... I am left with this feeling that this whirlwind of attention just got so out of hand so quickly and the actual story and message you want to get out to the public just gets lost on the way, as these reporters clambered to get the story out first, it seemed to be the case they wanted the bare bones of the story, and they put the rest together themselves (Lesson learned – If I deal with the press in future it will be on my terms and I will not be pressured into giving them bullet points and leaving them to fill in the gaps)

Most of these items can be viewed online (Just type Robbie Ovenstone into google and there you will find it)

Anyway rant over about the press, and back to Robbie, Christmas was absolutely wonderful and we all had a ball. Robbie was first up around 6.30am he came into our room, shouting “It’s Christmas” and sure enough his little sister Chloe was only seconds behind him, his teenage brother took slightly longer to appear (as you would expect from your average teenager) and off we all trotted down the stairs to see if Santa had been, sure enough on opening the living room door the room was full of neatly stacked presents with three corners of the room being occupied with gifts for Robbie, Chloe and Rhys respectively. The excitement clearly shown on all of their faces would have touched anyone’s heart and all set about getting into their presents... this was good to see as previous to the DBS Robbie always needed a hand to open his presents, this year though the story was oh so different, he got right down to business and got in about his presents with much less trouble than in previous years. Indeed he finished the unwrapping long before his little sister, something which has never happened before.

Robbie is getting more skilled on a daily basis and seems to be developing improvement in his fine motor skills more and more every day, some of the muscles which were affected with the dystonia which he now seems to be able to control are coming into play more and more on a regular basis, he really is doing fantastically well, main areas of improvement are stability (he seldom stumbles and falls now, where as he used to really struggle to walk or even stand without falling), he is also feeding much better having much more control when holding a fork or spoon (although still can be a bit messy sometimes) as for the next conquest, I believe he wants to manage stairs however still not 100% confident to let the reins go on this as yet, and we still insist he asks one of us to be with him when he challenges these to go to the toilet (not necessarily to hold his hand anymore, but certainly to be there behind him in case of a fall) He really is going from strength to strength.

He is also becoming a bit more independent when walking and gets frustrated when you ask him to hold your hand etc, by simply replying “I can do it myself” so good to see him determined to manage unaided, albeit we are still a bit away from him managing alone, and distance still seems to tire him out.

Certainly I now understand it takes time for the brain to adapt to changes in the settings of his implants, and I can now fully understand how his body needs to learn to use the new control he has over certain muscles, and these changes all take time and practice to show improvement, which is an ongoing process, certainly what I am aware of most is this little lad is slowly getting more mobile and confident on a daily basis, and ultimately he is still heading in a positive direction, something we haven’t seen in several years, this really is like watching a miracle slowly unfold before our eyes, long may it continue, this has now given our son a new confidence and self belief and is making him a much stronger person, regardless of where this journey eventually leads us we will always be there to catch you should you fall. We love you Robbie

6 Weeks on – 18th Dec 2011

We are now into the sixth week since Robbie’s implant and again a further busy week has been had, it kicked off with the local press taking pictures of Robbie and some of his classmates in order to announce the fundraising the school had done for the Dystonia society to the local community. This should appear in the local press later this week.

Other than this we have had a mountain of school activities to attend for both Robbie and his little sister Chloe, who have now had their nativity plays, school Christmas dinners etc, so there have been several distractions to keep us all amused and to add to the already high spirits that the lead up to Christmas always brings. Just this week’s school parties to go then the holidays are here... so all good on that front.

Anyway back to the matter in hand, as per last week’s blog where I explained Robbie had been back to get his DBS settings changed, we have been astounded by the changes that have occurred by this settings increase, all in a very, very positive way... Robbie has progressed immensely since this change and is now walking in a way which he hasn’t managed for many, many months, no longer is he walking two steps and falling over, hanging on to whatever he can reach instead he is walking much steadier, and seems to be able to balance much easier... to watch him doing this and improving these skills again is heart warming to say the least, and a deeply emotional experience for us all to see this wee man improving each and every day... the strange thing is we never saw any change for the first couple of days, and then he seemed to show an improvement one morning with his left leg becoming less stiff, and he has steadily progressed from there... part of me wonders if this was his confidence growing once the leg seemed to loosen off, then again it could have simply been it taking a bit of time for him to learn to use his leg again.... either way it is truly miraculous to see and witness.

In a similar fashion since the change his hand control seems to have improved further yet again, and he is managing to hold a pencil etc in a very much, less awkward manner, this has allowed him to have much more control over handwriting, drawing, colouring in etc and as such he seems very much less frustrated, and able to get on and do his schoolwork. (We are getting some really good feedback from the school and it seems Robbie is doing really well with his work at this time)

Overall this is by far our best week yet since the op, it really is turning into a really positive experience, and I will repeat to any reading this that may have the opportunity of the op and be in two minds, to go ahead and get it done 100%...

They have basically given this brave little soldier new mobility which he was definitely loosing had the complex motors team not arranged for the procedure to happen, side effects are minimal, his hair has now grown back in and seeing the scars is difficult, pain has pretty much been non existent (that said I still think it is taking him a while to come to terms with the battery pack in his chest – I think it is because he is so conscious of it being there still)

The only other downside is Robbie is patiently waiting for an opportunity to lie down in the bath, he cannot immerse the scars in water for the first two months post op, he can and does have a shallow bath, but can only get wet from the belly down, he was in the bath the other night and announced he is "dying to lie down in the bath" all will come in good time, unfortunately mid January in Robbie's case, this made me chuckle.

Most of all it is good to see Robbie getting better, and believe me it really is good to hear and see him fighting and arguing with his siblings (surely a sign he is feeling much better), he is happier within himself, he will readily go and join in any games where for a long time he just wanted to watch, on reflection this may well have been due to his lack of mobility stopping him from joining in, not now though he is right in the thick of it all, don’t get me wrong we sit watching him with great fear in case he bangs his head or chest but to be honest we realise we cannot wrap him up in cotton wool anymore and he needs the freedom to play and learn again, and he certainly is doing much better.

Uncle Robbie also got to feed his little new niece (Josie) this week, and managed with no issues whatsoever, this was something he would have really struggled with post DBS.

Unfortunately Robbie has picked up a sickness bug over the end of the week, which has slowed him down Fri/Sat but he seems to be past the worst of this by now (Bit like his Dad when he is unwell he feels really sorry for himself – could be a guy thing)

So there ends this week’s update, it really has been an amazing week and we feel this week has been the biggest step forward to Robbie’s progress by far, again all is good in the Ovenstone household. DBS we owe you the world.

Can I also just give a quick special mention to Alison Birkin who has been a true inspiration and rock for me to lean on over the last year or so through the bad times and the good, it is good to share with someone who has been there – thanks Alison, indeed I thank each and every one of you all for the support, kind words and encouragement you have all given during this time.

I also cannot forget to mention my wonderful family who are truly my reason for being, I simply couldn’t ask for a better Wife, children, brothers, sister and parents without whom this time would have been so much harder to face... Money and possessions are nice, but give me my little happy family over these things any day, as long as we can eat, keep warm and have a laugh, cry, play and be happy together then I now realise (years down the line) this is the true route to happiness.