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The Late Blog!

Sorry!  I missed my own deadline.  We have been very busy at MMT organising our Alice in Wonderland event in Glasgow which is now looking amazing! I simply can't wait for this event.  The Alice in Wonderland theme is a dream to work with, literally!  And we have so many exciting elements to the evening. Our guests will definitely not be disappointed.

It is said that the author of Alice in Wonderland, Lewis Carroll, had epilepsy and many of Alice's experiences in Wonderland are similar to the experience of a seizure; like falling down a black hole and things shrinking around her. Only those who have epilepsy can confirm this and unfortunately my own son Muir doesn't have the speech and language skills to be able to explain to us what it is like to have a seizure. Do let me know if this has been similar to your experience if you suffer from epilepsy.

Thank goodness for the epilepsy alarm.  Muir had a violent seizure last week in response to the onset of a rather nasty flu virus. His temperature shot up in the night to nearly 41 degrees bringing on vomiting, followed by seizures.  The whole episode took him by surprise and before the seizures began he stumbled out of bed in an attempt to get to me.  We are trialing a new alarm which is proving to be highly appropriate for Muir. As soon as he gets out of bed the alarm goes off and his bedside light will go on.  It will also alert us to a seizure whist he is in bed. On this occasion Muir was out of bed before the seizure began but the alarm had already alerted me to the fact that he was out of bed.

Infact, Muir was very unwell and had to be ambulanced to hospital, a rare occurrence for him these days. The seizures were brought on by temperature and it took all day to get his temperature under control before he was discharged.  It was a startling reminder for me of how vulnerable children are when a temperature really gets a grip and of course, for Muir the consequences are even more serious. Thankfully Muir bounced back really quickly and he is now very much on the mend.

Speaking of epilepsy alarms, as well as trialing our new alarm at home for MMT's suppliers Sensorium, I have been trying out a pulse oximeter supplied for Muir by Idea League, the Dravet Syndrome charity. The pulse oximeter is a very sophisticated and a very expensive piece of equipment normally used in hospitals to monitor a patient's oxygen levels and heart rate. This one is for use in the home and costs £1000. 

Sadly, we didn't get past the starting post with this piece of equipment because Muir was having none of it.  He point blank refused to have the wires attached to his body in any way. I have advised Idea League that I will be returning the machine, feeling in a way that perhaps I hadn't tried quite hard enough to make it work.  But his stint in hospital last week proved my decision to be correct. Not only was Muir tangled in the wires whilst sleeping, he was uncomfortable with the restriction the machine brought to his leg movement and ultimately, despite being very ill, he pulled off the wires that were taped to his toes.

Whilst I think the pulse oximeter might have a place for new born babies with epilepsy I have concluded that they are not a great idea for toddlers and children who wriggle about in bed. They are also extremely expensive and I am not sure they should be used on a child with a vagal nerve stimulator but the instructions are not clear.

Moving on to last weeks meeting of the Cross Party Working Group on Epilepsy at the Scottish Parliament.  This weeks subject was epilepsy awareness in schools. I was very pleased to see representatives of Epilepsy Scotland's parents group and also Edinburgh's epilepsy nurse Cecilia Brand.  Sadly, the meeting clashed with a national paediatric epilepsy conference that was taking place in the Royal College of Physicians in Edinburgh so paediatric epilepsy representatives were absent in the main.

It was a most interesting session with a general consensus that schools and teachers are not adequately supporting children with epilepsy; they are failing to identify when a child's ability to learn is being affected by their epilepsy; they are failing to recognise behaviours caused by their epilepsy and they are also failing to provide appropriate learning support when the ability to learn is hindered by a child's epilepsy. These issues will now be raised in the Scottish Parliament

A further concern that I have following this meeting is, yet again, the evidence that severely damaged children by epilepsy are being ignored. Statistics on the number of children in main stream schools in Lothian region requiring emergency medication for epilepsy were forthcoming (10 in total)  but the number of children requiring emergency medication for epilepsy in special needs schools could not be given at this meeting. Another example of this is Epilepsy Connections who, in their epilepsy awareness training in schools, prefer not to mention the fact that epilepsy can cause severe damage to some children for fear of upsetting them. May I say that I have spoken in a number of primary schools about epilepsy and also about my son Muir who is severely damaged by epilepsy, I have shown films about the damage that epilepsy can do to some children and I have found the children to be most engaging on the subject.  Furthermore, mine is the talk they remember and more often than not the children choose to fundraise for us thereafter.

Surely the point of epilepsy awareness is not to dismiss the severely damaged children like a well kept secret!

Yours till next time,

Ann Maxwell


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