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 :)
