Tuesday, 30 September 2008

Bouncing off the ceiling

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


Anonymous said...

Tell me where to send my donation.

CJ xx

Un Peu Loufoque said...

It is incredibly well written. I know the professional bolloking routine from visits to a speach therapist I came away feeling a terrible mother! YOu are doign well adn thank God boy had an episode on camera so at least you know they know you arent just being over anxious!

Angel said...

Oh, Tattie.

I am bouncing off the ceiling too and re-living the last week with you!

EPILEPSY ACTION!! You are a star! We pay small amount each month to try and make a small difference to such a needy cause. Let me know details and will sponsor you gladly!

Big sigh of relief from me (who is also an unobservant mother and someone who's brain cannot cope with too much information!)

I so feel for your-
When Idle Jack had the EEG's he was so young they had to get him to drink sedatives or inject him to make him dozy so we could keep him still enough for the tests. We then had to drive around the hospital for an hour to make sure he was properly asleep before we could lift him back into the rooms and get the rubber cap and electrodes on his head.

Didn't I tell you before that you are not going mad? I knew you were no mad than me!

So glad everything is caught on camera for all to see-will give you all the evidence/proof/diagnosis you need my friend.

You can now get on with your job of being a 'good enough mother' and in the meantime try and find a little time for yourself.

Sorry I am rambling but I have been where you are tonight and it brings it back to me. I know how you feel and am so glad it is nothing more sinister.

warm wishes to you and the boy
Angel (and Idle Jack)

KittyB said...

Sounds like a good session at the hospital, they'll have every evidence now of an episode, so the way forward will be clearer.
Wow! A marathon! And such a good cause. Seriously Well Done You!

Withy Brook said...

So glad that real progress is being made - and that you now know you are GREAT Mum!
Do put up where we can sponsor you somewhere. I am sure people will not mind and it is up to everyone whether they do or not. Well done you and so glad you have been accepted.

Grouse said...

I just cant imagine ow relieved you must be to have things recognised and be under professional guidance at last.......totally in awe of the marathon!

snailbeachshepherdess said...

even your writing is bouncing!
Respect re the marathon and relief re the boy.

Iota said...

I'll sponsor you!

Some doctors, honestly. It took a year or two and a change of doctor to get my 18 month old daughter over her phobia of doctors and/or being in a small room with the door shut, after an impatient GP examined her for an ear/nose/throat infection. It was routine stuff, but she was poorly, he was in a hurry, and the few seconds look down her throat and in her ears traumatised her. Don't they teach them anything at medical school?

I'm so glad you got some results, in spite of the docs.

Elizabethd said...

At last! It must have been so hard waiting and wondering. hope it will be a lot smoother from now on.

WesterWitch/Headmistress said...

Wow what a week you have had and yes had the bollockings too . . . but it sounds as though they will get to the bottom of it and well done for being accepted into the Marathon.

Potty Mummy said...

Always go with your gut instinct Tattie. Well done for sticking with it - and congrats on getting the marathon place! I'll be there to wave you on!

Cait O'Connor said...

So pleased that things are getting sorted out so well now you are in the hands of the experts. I guess they have to be really thorough, but it must have been tough for you with all their strict questioning etc. I have a friend whose son had petit mal when he was a child, he is fine now, (he's 30).
Good luck with the marathon, let us know when it is.

CAMILLA said...

What a week you have had Tattie, glad that the session at hospital went well, at least they have recorded it too which is good.

Well done with being accepted for the Marathon Tattie, let us know how all goes.


Pondside said...

Whew! What a blog! No wonder you're bouncing off the ceiling. I'm glad that you've got evidence for the doctors and will get the attention that your boy needs.
A marathon - I am seriously impressed - the closest I'll ever get to a marathon is as a volunteers.

Casdok said...

I hope you get the answers you are looking for.
The marathon! Good for you!! :)

Anonymous said...

That is brilliant re: marathon! I shoudl find out next month whether I've got a place too.

And even more brilliant about having specialists checking out your son. It must be terrifying not to know what's going on or what to do for the best - but having the professionals onboard is just what's needed.

Good luck!

Hannah Velten said...

Great news re the Marathon, Tattie - got a training regime drawn up yet? And great news about the hospital appointment; especaially that The Boy had some blank moments so that they can really register what happens to him. Mootia x

elizabethm said...

Wonderful news re the marathon (and am in awe too!) and it sounds as though you are on the right track with the boy.

Exmoorjane said...

Excellent that he had an absence while being monitored.....epilepsy can be so sneaky - one of my relative's would never ever show up when under investigation which made it SO much harder to treat.
Horrid consultant though - why do they have to make it harder than it already is? Just grrrr.
Well done for you with the marathon.....another runner (I am in awe!) tons of love, Janexxxx

Expat mum said...

These bairns - what they put us through eh? Just remember to follow your gut instinct next time as it sounds like it's spot on.

bodran... said...

Well done and are you going to do the marathon ? or is that a silly question. ope the boys ok xx

Pam said...

Well done Tattie. Hang in there.

Mom/Mum said...

You star - in more ways than one.

Anonymous said...

Tatty - wanted to let you know - I've just found out I'll be running the marathon as well! Or attempting to at least! Eek!!

Reluctant Runner said...

Hey, Tattie. Thanks for visiting my blog. I've enjoyed catching up on the story of you and your family. Sorry for the stress you're going through getting to the bottom of things with your little guy.

And also, best of luck on your marathon! Can't wait to hear how your training progresses as you get closer to the date.

Go on you know you want to...


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