Tuesday 28 February 2012

16 Weeks Today 26th Feb

Hard to believe it has been 16 weeks now since Robbie’s DBS, time really has flown by, and his recovery has been truly remarkable to say the least.

Robbie has been on a gradual reduction for more of his daily medication, and is now officially no longer taking Gabapentin, a medicine designed to combat neuropathic pain (pain relating to damaged nerves) the great news is over the last three weeks he has reduced these from taking three a day, down to two a day week two, and eventually down to one a day last week, and as of Friday last week this medication ceased, and happy to report he has not mentioned any pain throughout this time (with the exception of week 1 where he complained of back pain a couple of times, we are putting this down to over exertion as opposed to Dystonia related pain.) Fingers crossed this continues and this will be another set of tablets now removed from his daily intake.


So, in essence since the DBS he has now stopped taking Sinemet and Gabapentin with no adverse effects... We intend to leave as is for a few weeks and assuming no pain or adverse effects follow we will speak to the team about weaning him off his other medication Trihexyphenydil.


As mentioned in my last update, Robbie still can be very emotional, in this I do not mean so much easily upset, but more so very temperamental, when he gets angry or annoyed he still seems to “lose control” and will go absolutely ballistic for a short time, during these episodes there is little that can be done to console him, until he calms down a bit, then he will listen to reason and apologise for his outbursts. The way we are dealing with this is to take him away from the situation causing his angst, usually his angst is directed at either me or my wife (as we are mostly the one to say no to his demands) and normally if he has, for example lost his composure with say me, my wife will take him out of the situation, allow him to vent off some steam, then talk to him and let him see the error of his ways, alternatively if my wife is in the line of fire at one of his outbursts I will take him out the situation. Is this just Robbie developing his own personality, I am not 100% sure, however the other children in the house do become quite upset by this behaviour. When he does eventually calm down he will apologise for his behaviour.


Swimming is still proving a challenge for Robbie, he seems to manage quite well swimming on his back, he often needs reminded to use both his arms to drive himself forward, however when he gets it right manages really well (I am confident once this understanding sinks in he will crack this). He is now freely going under the water to retrieve hoops etc so his confidence is growing and growing weekly. Swimming on his front is a bit more challenging for him, but given time I am sure he will get to grips with this.


Robbie has even started taking school lunches again, (he previously came home in order to take his meds which he now no longer needs to take) we are keen for him to start doing this on a regular basis (currently he is there a couple of days a week) as this again further improves Robbie’s independence, and also gives him some real quality time with his classmates, in order to run around the playground and burn off some energy. Our longer term aim is to get Robbie taking school lunches 5 days a week, which will come with time.


As the weather continues to improve, we are looking to get Robbie back out on his bike, as he still has this “half peddle” way of going his bike (Stabilisers are still required) he seems to move the pedals 180 degrees, then pulls the peddles back up to push forward again rather than using the full 360 degrees.


Robbie’s wheelchair has now sat in the back of the car untouched since the New Year, to be honest I think it is more of a safety blanket now for us, it is always there just in case it is required.

Having read back over this update it all comes flooding back how this little lad was so dependent on his chair just previous to his DBS, and it makes you reflect on what his life was like then, in little over three months his life has been totally transformed, he is free to pretty much do as he wants now, he can walk, run, play, write, dress, draw, colour in etc etc etc without the constant fear of falling over, or the Dystonia preventing him from doing what he wanted his limbs to do. He is now free, this truly is remarkable and we all have witnessed what may well be described as a miracle happen before our eyes. The team at the Evelina made all this possible and we will be forever in their debt. I dread to think what Robbie’s life would have been like had he been born 20 years earlier, or left untreated, as he was really getting to be in a bad way prior to DBS.
To any of you going through a similar situation, my prayers are with you. Seek support, it is there if you look for it. You are not alone, and most of all always remember there is hope

2 comments:

  1. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
    My daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort . She usually tells me she haves jerky head movements . This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia , do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.

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  2. I recently have some difficult conversations and I did what a lot of people do when they want to know how to do something. I googled it. I came across Dr Williams herbal medicine on blog-site so many people suffering from different kind of disease including dystonia thanking him about his good work. I also have dystonia. I wasn’t running all over God’s creation with every man I could find but here I am. I have felt bad about myself for so many years now because of my dystonia status. I obviously still have some self-accepting to do but I want to thank Dr Williams for everything he have done for me,after taking Dr Williams medicine i was completely free from cervical dystonia within one month of usage, I think what you are doing is so admirable. you have helped me a lot! I want to definitely reach out to you and thank you for your amazing work. You are a good person, and an extremely talented man. You have helped millions with your herbs, and have really inspired me,and i pray you still continue doing the good work.you can also email him on drwilliams098675@gmail.com for help

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