I’ve been bouncing on the ceiling – not necessarily what most people would have thought I was doing following an appointment at Addenbrookes with The Boy – but what I have done nevertheless.
It’s been one of those weeks – gone in a blur.
I can’t believe it’s been only seven days since Dear Charlie and I argued our way into Addenbrookes in Cambridge and took The Boy to see the specialist about his blanking/absence seizures (Petit Mal)
The Boy had a great time on the Super Mario giggling and laughing for most of the time -infectious little scamp. Unfortunately the same could not be said for me. I was grilled. I was rather taken aback and felt very small and stupid – I actually admitted to it. I blame it on the specialist’s bedside manner that got me that had me blurting out truths I thought I had hidden from the whole world – I am an unobservant mother.
It was just like those dreams you have when you are happily doing something usually in a school/office scenario when you suddenly realise you are stark bullock naked – it felt just like that: exposed and rather chilly.
Of course the specialist was just doing his job and getting the facts. Absence Seizures are tricky little things and of course The Boy’s ones would be atypical wouldn’t they? I felt I was being asked to justify why I was having the appointment. First I was told that what I described about the blanking was wrong, then the history was incomplete, then that teachers had a tendency to blame lack of attention in class on absence seizures and was I sure.
My brain always has a problem when too much information is heading my way especially when it seems to be coming across in an aggressive manner. My tongue sort of curled up and any connection between it and my brain was lost in translation and I sort of stumbled out my answers feeling like a total idiot.
In a nutshell The Boy zones out for a few seconds frequently during the day. You can’t snap him out of it by shouting at him – he just does not hear and when he comes back he usually looks at you as if you are quite bonkers as if to say: “Why on earth are you calling my name in a middle of a conversation?”
Usually he continues where he left off, sometimes in mid sentence. Other times he looks quizzically at you for guidance as to what he was doing or talking about.
I’ve seen him blank riding his bicycle and going right over the edge of our deck without noticing. That meant he dropped some 2ft to the ground. It was bit of a shock I can tell you and required lots and lots of cuddles. Both he and bike were fine thank God. But it certainly put me on alert as he could quite as easily tried to go across a road in front of a car!
For a long time I thought it was because he was tired, or that it was to do with growth spurts, as I would only notice them occasionally at supper time or if we were talking. Since the longest is only five seconds and the shorter ones merely a heartbeat I suppose it was amazing anyone picked them up at all.
It was picked up in Nursery when he was just four but didn’t get noted in his Reception year despite me asking for it to be monitored. His form teacher wasn’t exactly concentrating and I have yet to get to the bottom of that one – suffice to say I will be having a written explanation from the school for the specialist as I was definitely noticing the absences at the time but putting the symptoms down to tiredness at the end of a school day and the ones in the morning to having to get up too early!
It was his Year One form teacher who brought it up with me at the beginning of this term; she’d seen something similar before in a young boy, which turned out to be Absence Seizures/Petit Mal – I was so grateful that she’d noticed and that it wasn’t just me. But I also felt so completely stupid for not going with my gut feeling – I knew something was wrong. Perhaps I was too scared to find out.
So that left me in a small room being bollocked – well not exactly, it just felt like it.
Luckily I was informed that the specialist always kept an open mind and in the way that spoke volumes for similar treatment for weeks to come we were whisked into making an appointment for an EEG.
Which is where The Boy and I have been this morning but still doesn’t tell you why I’ve been bouncing off the ceiling.
The Boy was brilliant and liked the idea that he would have wax in his hair: “Just like a rock star!” he says to me.
He is lying on a trolley bed propped up and both neurophysiology technicians are attaching wires to his head. They chatter to him and he to they in a non-stop sort of way pointing out the pictures in the room, the panic button, the lights, and all sorts. They talk about his school and his mates and what he likes to do.
Then he’s asked to shut and open his eyes, to look at a flashing light and to blow on a windmill to make it spin.
I notice he blanks a few times during this and am glad that the whole session is being recorded – at least there will be proof now. Then suddenly he flops eyes glazed and it’s not a few seconds this time it seems to go on for ages but I’m sure it was only really about 10 seconds. My heart leaps to my mouth and I make a move towards him to gather him up, to protect him. Neither technician seems worried and The Boy perks up again unbothered. It takes a while for my heart to stop racing.
He spends ages choosing his badge at the end of the session and then we sneak a hot chocolate and brownies in the canteen before returning to normality.
His return to school just before lunch is worthy of the rock star he wanted to be earlier. There are a babble of questions and suitable gasps at the answers. I wave him goodbye and return home to work.
There are a lot of e-mails and as I go through them I come across a name I don’t recognise. I open it and there it is – we’d like you to join our team to run in the Flora London Marathon 2009….I’m bouncing off the ceiling with excitement – this is like: Hey WOW!!!!! Now I can do something – I’m going to be raising money for Epilepsy Action…