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...