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Well, it's been a good sta ...

Posted Mar 11 2010 7:36am

Well, it's been a good start to 2010 so far. Patrick had been having a few seizures over xmas and new year but after a consultation with his neurologist and a tweak of his meds he's doing better.
We're in the process of starting his statement at the moment, should have been sorted last year but there weren't any educational psychologists to do the assessments! As part of the process we've been getting reports from all the professionals that work with Patrick and surprisingly it's been quite positive. There is lots of focus on what he can't do, obviously they have to concentrate on these to make sure he gets the best support at school but there has also been a lot of really positive comments made about what a happy little boy he is and how much he has progressed over the past year, much more than is expected of him really. We've seen a big improvement in his awareness, he can associate object with activities now e.g if I show him his headphones he gets excited as he loves his music. When I get back from dropping Isaac at school he hears me set the car alarm (it beeps) and looks to the door for me coming in. Both these skills are really important and is a good sign for his future communication.
It's been interesting getting these reports as for the first time we have it in writing what Patrick's diagnosis is. It's a mixture of a few things and isn't straight forward but will make it easier to introduce him to people.
1) Epileptic Encephalopathy - loss of skills in all domains of functioning including cognitive, behavioural, communication and motor that occurs with epilepsy and appears to be caused by epilepsy.
2) Cerebral Palsy - a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.
3) Cerebral Atrophy - a common feature of many of the diseases that affect the brain. Atrophy of any tissue means loss of cells. In brain tissue, atrophy describes a loss of neurons and the connections between them. Atrophy can be generalized, which means that all of the brain has shrunk; or it can be focal, affecting only a limited area of the brain and resulting in a decrease of the functions that area of the brain controls.
4) Epilepsy

It's good to have these 'labels' for him but none of these can tell us how or why his seizures were triggered in the first place. Epileptic Encephalopathy is usually linked to certain syndromes which thankfully Patrick doesn't have so we're none the wiser really which suits us fine.
Patrick had his 3rd birthday a few weeks ago, I can't believe how fast the time has gone! He had a great weekend with lots of family and friends. I made him a special sensory tent by converting a pop-up play tent which he loves and he got lots of money towards play equipment.

I'd just like to mention the Variety club charity who recently funded Patrick's new super-duper supportive car seat , make sure you all buy one of their gold heart pin badges!
We're off to Gran Canaria for the Easter holidays which will be our first time abroad with Patrick, lots of organising and panicking to be done over the next 3 weeks but I can't wait to get a bit of sun!
I'll hopefully have loads of good photo's to upload after that so look out for the next post!
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