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