Two weeks today – 25th October 2011-10-25

Here we are then two weeks today and we will be waiting on Robbie being taken off for his DBS implant... nervous times and the realisation of the surgery has taken its toll on all of us in one way or another throughout this time.

Pressure feels really high on the whole family unit just now, and I believe we are all a bit more reactive, and “short fused” at the moment, however on the positive side we often discuss the op with each other which helps to take the edge off the atmosphere somewhat.

Robbie and I will be heading off for London for his mobility to be reassessed, prior to the implant due to the changes in his ability of late, as mentioned previously in the blog. We leave on 26^th Oct, for his appointment on the 27^th, and then back home to Scotland after his assessment...

We have now received the “official” appointment letter from King’s College Hospital, so other than any unforeseen mitigating circumstances we now have the peace of mind, this will go ahead, this is a huge relief to us all, as the weeks had went by we envisaged further delays due to not actually having a written confirmed appointment, and having to rely that what we had been verbally advised didn’t seem to rubber stamp the op would go ahead (I think in the back of your mind, a written confirmation of the appointment cemented and expelled any doubt there would be last minute hitches, indeed it was like a reassuring “yes” this is going to happen)

Robbie was at the orthotic clinic yesterday getting his new shiny ankle splint, and all seems to be comfy and fitting well, hopefully if the op is a success this may be the last one he requires (Maybe I am being a bit too quick to state such a thought, but deep down I have a really positive feeling about this)

For those of you reading this who may be about to face a similar situation, I feel it is best to explain and talk about the effects of Dystonia from my own perspective, how I feel about Robbie’s situation from a parents perspective... you will probably run through some or all of these thoughts at some stage in this process, hence I wanted to put these down in writing and share with you all... It may help some of you out there... I hope it does...

I have been through an absolute, and frankly horrendous variety of emotional states throughout the process running up to the DBS implant, I have often felt isolated and alone, and asked the fundamental question - 

WHY ? - Why Robbie, why my boy... however over the years and months I believe I have slowly realised, it’s not really so important why this has happened, the cold hard facts are it has happened, and chances are we will probably never know why, I believe the most important thing is making sure we always try to do what is best for Robbie, do what will make his life a bit easier, I may have made some poor choices at any time but we always do what we feel is right for him at any given time.

Fear – Fear of the condition was also a major feeling that has been a major factor of stress throughout this whole situation, you will find fear waiting to pounce out at you behind every corner on this journey. You will worry and be scared on a variety of occasions... you will feel fear when you first visit a consultant, fear of their findings, fear of your child having to give blood (Robbie is petrified of needles still after so many samples being taken), fear of anaesthetics every time an MRI needs done, or PET scan etc, fear of lumbar punctures... As a parent you will say to yourself on every occasion please let it be me, let me take his pain, and take this away from my child.

Future – You naturally stress about your child’s future, I still daily think about this, how will he manage when he is older, starts secondary school, starts life after school, will he cope when we are not around anymore. It sounds silly, but this is something I am sure you will think about and go through on a regular basis.

Isolation – You will at times feel isolated, helpless and alone, and you do feel you are the only one going through these problems, in reality you are not, but you will feel that way... I would suggest (once you have a diagnosis – which can take a very long time) look for groups, charities, local support services etc, these can be a real eye opener, and help you to meet people who have been through similar situations, and this helps you to discuss your concerns, questions etc... Personally I have built a great support network through the above services and often it is good to talk to someone who has already travelled down the path you are currently on... I have many friends to thank for this, and often I will speak to them and ask questions on any area I feel I need to take some advice on... basically there are people out there who can help you get over your feelings of isolation, and social network sites and carer centres are a great place to find these people. I have mentioned one particular source below where you will meet a great group of people who have (and still do) help me immensely... There is a facebook group - The Evelina Childrens Hospital Dystonia Support Group this group has been a major help and source of comfort to me throughout this whole ordeal. Obviously if social networking isn't your thing, the Dystonia Society have an advice line which is available on their website... try these things they may well help

Again, this is only the tip of the iceberg on some of the feelings you will have along the way, and this part of the blog may come across as being somewhat dark and sombre, this was not my intention but I wanted to share some of the key thoughts you will at various stages experience, overall you are not alone, there is help out there, and people who understand your frame of mind at any given time. My e-mail address is available on this blog page if you want to talk about anything feel free to get in touch, add me on Facebook, or feel free to leave a comment and I will respond.... Just remember you are not alone in this, help is there, sometimes you just got to reach out and say “I am struggling... help!”

DBS - 3 Weeks Today 18th Oct

As the time to Robbie's DBS surgery moves ever closer I thought it would be pertinent to discuss our thoughts, feelings and plans...

Thoughts - Again a very mixed bag of emotions are felt daily by the whole family, the DBS now sits very firmly in our minds and never seems to go away, even through moments of distraction the fears and emotions are lurking just below the surface. Even Robbie is talking about the surgery, he is inquisitive, and wants to know when it is, and we often look at the calendar and count down the days... 

I had a very interesting, if somewhat difficult conversation with Robbie the other morning, there we were sitting together in the kitchen having my morning coffee and just chatting day to day chat, we were alone as the rest of the house were either still sleeping, or in the process of waking up, hence it was nice quiet one to one time with Robbie and I, and eventually he got round to talking about the op, again asking about how long it was till the day, and he said to me "I will get the op and I wont have Dystonia anymore eh?, because I don't like having it" It was very tempting as his Dad to say, yes, although I knew this was not the case, and deep inside I knew I could not give him this false hope, so I went on to explain, "No Son you will still have Dystonia, but it will not be as bad, and hopefully you will be able to move about a lot easier, and maybe write a little bit better... if you are really lucky you might be able to stop taking your tablets everyday, and maybe even get rid of your splint"... His reaction was fine, and he seemed happy enough with this, and simply changed the subject, obviously I couldn't let it go so easy, and inner feelings of this conversation have been repeated in my mind daily ever since. I admire how young kids, can just stand up, brush themselves down and move on from a conversation such as this...

Feelings - For some of you reading this who have experienced a child who suffers from Dystonia, you will probably understand what I mean, and somewhat to a lesser extent I am sure those who haven't witnessed such a trauma will probably be able to "put yourselves or thoughts into that persons shoes" I think my main feelings are towards the future, how will Robbie cope with this as he gets older, it is fine just now I can lift Robbie into the car, lift him in the bath, help him with his toileting needs etc, but the question you constantly ask yourself is what happens ten years from now, does a teenager or young adult want help to do these everyday things we take for granted, and the answer I always come to, is probably not. 

It may seem as though I am being a bit pessimistic and assuming the op will not help, but I am a firm believer if you always manage your expectations and don't set your sights too high, then you are likely not to feel so dissapointed if things do not go so well.... 

That said I still have this other vision of a fairy tale ending to all of this, where it all goes really well and Robbie does most things by himself... 

I believe the above pretty much sums up the mixed feelings I have as we move towards DBS... Only time will give us all the answers, and as stated many times previously, regardless of the outcome we will always be there, right by his side.

Plans - Immediate future we have quite a busy schedule ahead, with a new splint being fitted on Mon 24th (He has rapidly outgrew his original one). Off back down to the London (Evelina) on the 26th, for an overnight stay, and he has an appointment on the 27th, to get his mobility reassessed prior to the op...  then home, and back down again on the 7th for admission for his op on the 8th.

The next few weeks are going to be traumatic to say the least, however I still am looking forward to it, at least we will know the procedure has been done, and we will assess the results in due course... there will be closure on this stressful period in all our lives.

Other than the above, we have made advances in relation to Robbie now accepting he needs to get his hair cut really short for the operation, he initially flatly refused to have this done and we envisaged this was going to have to be done by the surgeon on the day, however with a bit of persuasion from Mum (after her getting him a huge collection of Beanie hats for after the op) he seems to have accepted it more, further to this a family friend who is a hairdresser has agreed to give him a short cut at the end of this week (to get him accustomed to the style) and then a further really short cut before we head off down for the op in Nov... 

We are also on the final week of the October holidays and the weather hasn't been great at all, so we have been a bit housebound and Robbie is really looking forward to getting back to school next week, getting back to playing with his friends... We have discovered a new skill though, making chocolate crispies !!!! Robbie and his sister Chloe regularly do this with Gran Ovenstone, however we had a crack at this at home last week with outstanding results, so good we made them twice... Not quite at the making scones or pancakes stage yet, but we will get there!

The cooking/creating cakes thing seems to be something Robbie really enjoys, who knows perhaps we have a budding Gordon Ramsay in the making here!!!

4 Weeks 4 Days - 6th October 2011

The time is eventually passing, and it seems to have dragged in, but the light at the end of the tunnel is becoming more visible with each passing day, and Robbie's DBS is firmly in our sights now, and we await the 8th November with many varied and mixed emotions...

Robbie seems to have come to terms with using his chair at all times when in school, and has also now accepted he needs to use the disabled toilet whilst at school, seems his initial resentment to all these changes have subsided and he now accepts this without a fight. The fact there is a support teacher with Robbie throughout his full day also helps to relax our fears for him when he is at school. He still is reluctant to stay at school for dinners, but a Monday and a Wednesday are his regular days for staying for lunch, and he comes home for lunch the rest of the week. The 2.30pm school finishes seems to make Robbie happy also, he seems less tired when he gets home...

Still waiting on delivery of Robbie's new splint, but to be fair they did advise 3-4 weeks, so there is no issue there... hopefully the DBS may help us lose the splint all together... only time will tell.

The team at the Evelina got back in touch in relation to doing a further review with Robbie to repeat mobility base lines, and possibly upper limb functions. This is due to his recent decline in mobility and stability... this decline seems to have slowed now thank goodness but his mobility and stability are much worse than they were in July when he was originally assessed. So we are off down to the London on the 26th, with a morning appointment on the 27th Oct... then home again...

I also managed to complete my first ever 10k race in an attempt to raise some funds for the Dystonia society. I ran the BUPA great run in Edinburgh on the 2nd Oct, in an amazing time of 1hr 8m, not bad for a 46 year old smoker (The ciggies need to stop they are slowing me down!!!) Think it would probably be best to get Robbie's implant out of the way before I attempt that challenge though, I dare say that is going to be one of the longest days of our lives...
It was a really good feeling to achieve this after 46 years of life, it made me feel so proud inside, and you certainly get a sense of achievement, think running has become my new friend and I will definitely take part in future organised mass run events, the atmosphere was amazing, everybody helping each other on all the way... It was great : )
Robbie and co pictured below proudly displaying his race medal...

The run up to surgery is a real emotional rollercoaster, and your thoughts and feelings about the op change several times throughout the day, one thing we are convinced of though, we need to go ahead and give Robbie this chance... regardless of the outcome, he will always be our little lad, and we love him to bits, nobody or nothing can take that away from us... He brings happiness and sunshine into all our lives xxx

Letter From Australia - 20th Sep 2011

There has been quite a substantial decrease in Robbie's mobility over the last several weeks, and this is taking it's toll on Robbie first and foremost, however the family is also struggling a bit to cope with this change.

Again his poor mobility in his legs seem to be the biggest and most obvious change, the school have now become quite heavily involved as they feel Robbie not using his chair isn't really much of an option anymore... I totally agree and understand where they are coming from, obviously the classroom environment is full of potential accidents waiting to happen with the array of desks and chairs throughout the classroom for someone not very capable on their feet, thus they have asked if we are okay with him using the wheelchair at all times within the school, unless a support teacher is on hand to assist and support Robbie.

Even using the toilet, or washing hands etc at school there is a need for assistance at all times, which Robbie has openly discussed he is not happy about, however for his own safety he needs this support, so he has been told he needs to do this, at least for the time being...

The school have also asked if Robbie can finish at 2.30pm daily as he becomes very tired later in the afternoon, which we have agreed to for the short term, the school have advised the period between 2.30pm - 3pm is basically "clearing away" time, so I dare say his education will not be affected by this change.

The occupational therapist has also been at the school to assess Robbie, and she too has backed up the schools suggestions, and also insisted when using the toilets at school Robbie needs to now use the disabled toilets (again this toilet has hand rails etc so is much more stumble friendly with an array of hand rails etc to hold on to in the event of a stumble)

Again the growth spurt continues with Robbie, it really is unbelievable how much he has shot up over the summer, and a trip to the appliance clinic was required yesterday as he has outgrown his splint for his ankle... new one due to be ready 3 or 4 weeks down the line.

Robbie has been very vocal about his dystonia of late, and will often have deep and meaningful conversations with Mum and Dad about how he feels about it, as always we just try and listen, and answer as truthfully as we can any questions he has... 

One interesting conversation we had which I would like to touch on, was where a friend from Australia (whom i have been contacted from via the blog) had sent an e-mail advising their daughter has dystonia, she is 5 years old and I sat and spoke to Robbie about this little girl with the same problem as him, and one of the chats that came out of the conversation, was the fact Robbie was genuinely surprised when I said someone else has dystonia, it obviously seemed to him he is isolated and alone with this condition, and to explain this wasn't the case, and there were other children with the same issues seemed to make him brighten up a bit and feel a bit better, in many ways I am glad he is now openly talking about how he feels and giving himself a chance to let those frustrated feelings out. (Many thanks to Julian and Marsela for the contact, I really do believe this has been a breakthrough in helping Robbie to talk about his dystonia)

Other than that it is pretty much business as usual at home, we still give Robbie free scope to run (and fall) at will at home, he still needs to burn off all his energy !!! That said we have made the house as fall safe as possible, with all sharp edges removed where possible, or at least hopefully out of harms way...

The only other news is I have e-mailed the complex motor disorders team at the Evelina, to enquire if they would like to re-run their mobility benchmark tests again, as these were done in July, there has been quite a drastic change in his mobility since this time, I have advised I am happy to take him down before the Op if they want to re-assess his mobility post DBS... now awaiting response...

7 weeks today to the op... be counting the days soon !!!

Fresh Concerns - 10th Sep 2011

Well after the last couple of weeks being so quiet, things seem to have taken a downward turn this week (maybe I was too quick in stating there had been little change over the last couple of weeks in my last post)

Robbie and I were at the Sick Kids on Thursday 8th to catch up with Dr Eunson, to discuss this habit he has developed of turning his left foot away from his body, as this, we believed was the cause for the recent increase in his falls, however when he was examined it transpire the turning out of the leg is not in relation to dystonic movements in his leg, but instead it is in relation to his mid back muscles cramping and going into spasm with the dystonia... thus he is adjusting his leg to try and regain some stability (with little success), as if he were to stand straight the back muscles would pull him backwards and cause him to fall ... this new progression of his dystonia is making walking even more difficult to Robbie along with the new pain associated with this new dystonic area, which again is really hard to come to terms with, and witness day in day out. He really is a little trooper though and fights on regardless, however this progression is clearly intensifying the pain as you can clearly see this in the little guys face when it happens.

Dr Lin from the Evelina also got in touch that evening to have a chat over Robbie's results from London, it transpires the MRI and PET scans have both come back as normal which is excellent, however the Magtsm test has unfortunately not been so good news, in that (and it is all a bit complex here) the test has brought back very slow response in his right arm and rather worryingly no response was recorded in both his legs, the Dr went on to advise this does not rule him out of DBS, but may affect the success of the implant, however on the same hand may not affect the success, it really is just a try it and see situation... This has put a whole new perspective on all our thoughts having barely come to terms with the Dystonia as yet, truly it feels like we are back to square one, with the worry and uncertainty on this journey, however we will carry on we have to try and do what is best for Robbie... I appreciate the Doctorr needed to share this finding, and appreciate he did make us fully aware, but again this does bring fresh concern into our minds, just what we need something else to worry about.

We also experienced a traumatic incident last evening where for the first time ever Robbie has been woken from sleep by a dystonic spasm, normally it was a case of Robbie fell asleep and as if by magic the dystonia disappeared  however this evening we were sitting in the living room and we heard him crying really sore, at first we ran up the stairs thinking he had had a bad dream or fell out of bed, however he was lying awake in obvious pain saying "It hurts, It hurts" and this went on for quite a length of time, to the extent I contemplated casualty we were so concerned... the spasm seemed to be coming and going every few minutes and you could tell by Robbies facial expressions these were causing him major discomfort... We tried a hot bath and Calpol, and after an hour or so, the spasms did subside and thankfully we have no repeat of this as yet... This is one of the toughest times I have dealt with thus far throughout this whole situation, it rips your heart out to hear and see your own child in great pain, and you are literally helpless to do anything other than try and comfort him and get him through this pain till it eases. To be fair Mum deals with these situations better than I as I tend to panic and stress out... thank goodness she was there to calm me down also.

We have discussed this with the Dr's and they have prescribed a further medication (along with the truckload he already currently takes daily) called Gabapentin... having researched these it seems they are used to relieve the pain of postherpetic neuralgia, fingers are firmply crossed these will help prevent any further episodes of this. The Doctor has also confirmed the date they have for Robbie's DBS is the 8th November.

On a more positive note we did attend a 40th birthday party of a family friend last night for a while, and Robbie had an absolute ball at this, being in a big hall he got lots of freedom to run (and fall) to his hearts content, he came home about 9.30pm, had a quick snack, and went off to bed and immediately dropped off, totally burnt out... He looks so peaceful lying sleeping, he is the best kid ever, and my heart goes out to his bravery and determination... Roll on November and the implant, hopefully he will get rid of this pain and get more mobility back as he is a normal 6 year old and just wants to run, play and do the things all the kids his age can do... We love you Robbie xxx

September Changes – 6th Sep 2011

Several people have contacted asking why no update to the blog for a while, in truth there has been very little change or events over the last couple of weeks with Robbie.

After the initial teething problems at school, the dust seems to be beginning to settle and a stable routine seems to be helping to calm the waters both at home and in life in general.

Other than his routine 3 monthly visit to the Orthopedic consultant there has been no medical contact from the health service whatsoever, despite me contacting his specialists secretary at the Sick Kids last week, and asking if he was to see Robbie again soon there still has been no call forthcoming to either confirm or advise (Note to self – maybe try calling again today)

Robbie has taken a growth spurt during the summer months, not only highlighted by the ever shrinking hemline on his trousers, but also confirmed by the Pediatric Orthopedic Consultant who has advised his orthotic splint is becoming a bit short in the leg, and there are some slight signs of marking on his leg when this is worn for any period of time. Thus a trip to the Orthotic clinic is to be arranged in the next week or so to have a new splint arranged.

In relation to his Dystonia, there have been more and more reports of falling at school, and even around the house he seems a bit more clumsy and prone to falling over, however he just picks himself up, shakes himself down and get on with it, the only positive slant on this is he seems to have developed a great “save” response when falling!, and very seldom hurts himself as much as he used to. There seems to be greater dystonic tightness in his foot, and this may well be the reason for the new unsteadiness he has developed.

In relation to school, and his mental work, he seems quite tired at the end of the day, he doesn’t seem to be enjoying school as much as he did in Primary 1 and again this seems to be tied in with the muscle spasms in his hand giving him lots of trouble whilst trying to grip a pen and write, he also complains a bit more in relation to sore hands, legs and back… In general there does seem to be slight progression of the dystonia, and November and his DBS implant still seem so far away, even worse we still have not had official notification of the appointment for this to happen, and you cannot help but stress and worry in case this appointment is going to fall through, and he is going to have to wait longer for his treatment.

Some may think I am wishing my life away looking so forward to November and the DBS, but I want this for my child, I want his pain to cease, or at least decline, I want to see him being a bit more able to do things… I want to see that happy little guy again on a more regular basis, I simply want what I know is best for my Son.

Sleeping Problems Resolved ? - Aug 21st 2011

After much running back and forward with calls to hospitals, and then the local Doctors, then back to the hospital, then back to the Doctors we eventually managed to speak to a registrar who could prescribe medication to help with Robbie's sleeping issues...

Bit of a long story but here goes, I made the call to the Sick Kids on Monday to try and speak to Robbie's consultant and after being passed from one department to another eventually got through to his secretary to be advised he was on holiday through to the end of August, I briefly went over the issue with his secretary, and she advised she would have one of the registrars call me back once they had finished their ward rounds later in the day, sure enough on Monday afternoon around 3pm a call came through and it was indeed the registrar, she was quite thorough with her questions, and we established that the problem seemed to be due to Robbie struggling to get to sleep and once he was sleeping staying asleep wasn't an issue... She agreed this was an issue and confirmed she would trial him on a low dose of Melatonin (2mg) this was to be given before Robbie's bedtime and would help induce sleep. 

Research online has brought back that this is a natural hormone produced in the pineal gland at the base of the brain. The drug hastens sleep without the hazards or side effects of sleeping pills. 

Then I had to call my doctors, and arrange when the doctor would complete the prescription, the local surgery said they hadn't received the fax as yet, and I was asked to call back the next day... another restless night lay ahead... On the Tuesday morning again I called the local surgery only to be told they had not received the fax as yet, I called the registrar who assured me the fax had been sent and received, and so it went on till 4 calls later the fax was resent and the surgery eventually advised they had received this, I was to pick up the prescription Wednesday morning, sure enough another restless night again !... I did manage to get the prescription on Wednesday morning a Robbie took the medication on Wednesday evening, he went for his bath at 7.30pm when the drug was given, bed at 8pm and he was still awake at 9pm, as I had gone up to speak to him, he did appear very drowsy, and sure enough 10 mins or so later he was fast asleep... fantastic, this was the first time he had been asleep this early in months...

The only downside was seeing him in a what can only be described as a drowsy, semi-conscious state, as it didn't feel right for some reason, but regardless this is being done for not only Robbie's but his siblings benefit also, after long deliberation my wife and I have decided we will only use the Melatonin on nights where Robbie has school the next day, so he will get a break from this.

Other excitement this week was back to school, Robbie at first, seemed reluctant to be going back to school, however quickly changed his mind once the day to return came and was up with the larks for his first day in Primary 2, where a new teacher and old classmates were there, and again we could settle back into a routine.

There have been a few "teething" problems in the first week back, and a meeting with the school has been set up for this week to discuss our concerns as highlighted below - 

Support Teacher - It has come to light the school had advised Robbie's support teachers hours had been cut, and the school had never thought to inform us as such, despite the fact on the last two meetings with the school prior to the summer break I had raised concerns that Robbie may have issues with the changing of classes and teachers, (He doesn't seem to take very well at all to change, I believe this may be another effect of the Dystonia), however as his support teacher (Mrs McDonald) would still be there the transition should be okay as he has a familiar face around... when we arrived on his first day Mrs McDonald was there however informed us she had been told her hours would reduce, and she wasn't sure who would be there in her place when Robbie arrived for school... I called the school regarding this and they assured me there would still be a support teacher, however couldn't advise me who at this stage ? When we arrived the next morning there was a teacher who said she was there for Robbie, but she wasn't sure if it would always be her ? - You can imagine this will be one of my main discussion points at this weeks meeting with the school.

Lunchtime Pick Up - The next day we went to the school to pick up Robbie at lunchtime to find him standing struggling to put on his jacket in the cloakroom unattended, the rest of the class had been taken to the dinner hall, and Robbie was on his own... this certainly upset me as Robbie struggles to stand unaided, and I certainly do not expect my child to be unaided at any time, especially on his own. An apology was given  when I went to pick up Robbie in the afternoon and I was told this was a mix up with times... This is a situation I will not tolerate happening again.

Water Bottle - On Friday, as we were running behind schedule, I got to the school with Robbie, and realised I has forgotten to pack his water bottle, when I spoke to his teacher she stated "well he will just have to do without" !!! I went straight to the school office, told them Robbie was on medication and advised I had forgotten his water, to which the school secretary responded "Not a problem, I will take water through to him" - Why couldn't his teacher have done this ?

Wheelchair - Robbie's teacher suggested to me that I take Robbie in through the office every morning as he has his wheelchair with him, (He isn't actually in it at this time, it is taken with him in case he needs it) I advised I wasn't happy to do this as I wanted him to be part of the class, and line up with his schoolmates at the start of each day, the teacher said "That is fine as long as you are here every morning to lift it in" ? 

Overall, to say I am rather annoyed at the school and their apparent lack of care this year compared to the teacher he had last year is an understatement, and one issue I hope to get resolved tomorrow... I do not know how aware his new teacher has been made of Robbie's needs but things need to be discussed and I have no issue raising my concerns where Robbie is concerned.... Okay folks rant over, and a new week dawns...

School Update - Just thought it best to add an update, we have now been to the school and these issues have been fully raised and addressed... hopefully we have seen the last of these problems. To be fair to the school, they were very quick to respond to my concerns and we are all satisfied the issues have been resolved :)