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.