And The Walls Come Tumbling Down Again.....

Life really does give out its curve balls too generous; I do wish it would hold some back for a rainy day!!!  I realised some time ago that having a child on the spectrum I should be prepared for surprises at a drop of a hat.  Saying that I still have moments of complacency and recently I thought we had it all sewn up.  Well certainly for the immediate future! Our 'Bob's curve ball came round that corner so fast it took the stuffing out of all of us.  

'Bob' has suffered with, one can only describe as, 'déjà-vu' type headaches for nearly two years and fast pulse probably longer than that.  The suspicion lay very much at the door of his ADHD medication, and the Professionals seemed to confirm this or certainly wanted it to be so.  We dragged 'Bob' to all sorts of appointments.  The poor lad has been prodded and poked, his head has been entwined with wire and sticky pads, and we’ve even seen our own heart pumping thanks to ultrasound!  It was a technological exercise recording his heart rate and passing the beeps and blips down the phone line, which of course I can now add to my skill base!  So to have this all confirmed at the beginning of the year as medication induced migraines and sinus tachycardia was a relief! Even though the names would conjure up something horrendous they were in all tense and purpose manageable.  Now then that's what we thought......

The assessments were long gone in the past and 'Bob' was gearing up to finish school for the summer holidays in July, and looking forward to a well earned rest.  The end of term is always slightly stressful because the normal routine is off kilter, and the rules become quite lapsidasicle.  This particular day didn't start too well, and my little 'big' man was complaining he felt unwell.  I sigh quite heavily at this point to myself, and the wonder that somehow I could have prevented what happened does flash through my mind. 'Bob' does have a diva side, and I have to deal with the here and now, busy morning and I really didn't want to have to pamper that shenanigans.  I drop him off at school; go back home and start to plough through the mammoth pile of washing.  I had such an uneasy feeling that day, I felt odd, couldn't put my finger on it just something was niggling.  By lunchtime I've pushed that one to one side and I'm contemplating a little bit of retail therapy! No such luck! Mobile phone goes off.  Not many people phone my mobile only school.  So I knew it would be them, and the possibility it was the call to come and collect a poorly 'Bob'.  Guessed well... it was just that.

He looked dreadful, sullen and pale.  I'd never seen him this bad.  I just about get out of him that he's had 5 of these 'déjà-vu' migraines. BOOM! One after another!  If I could just get him home and put him to bed, darken the room and give him a couple of paracetamol he would be fine.  Great I remember we don't have any!  'Lil' is at home that's the answer, I'll leave 'Bob' with her and quickly go and get some.  If only I had listened to the gnawing in the pit of my stomach, and the pop-in thought he may just have a fit!!

Twenty minutes later I get a call that no mum really wants to hear whilst sat in the middle of the ASDA car park.  Our 'Lil' is hysterical, sobbing I can barely hear what she is saying but the words "Bob" and "Fit" jumped through the hand piece and gripped my throat.

"Call Ambulance" I shout, "I'm on my way!"

Don't ask me what I was thinking; I drove three miles like a woman possessed.  I didn't particularly care if I got caught speeding, but I was bothered I didn't kill anybody!  There was a sense of surrealism, and almost like the car was hovering above the surface of the road.  I don't recall any other sound than the car's engine.

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 I'm not too sure whether I put the hand-brake on, but I abandoned the car somewhere on the road and ran!  I don't know how I stayed calm, just don't!  My daughter is in hysterics running between the lounge and kitchen, and there is my boy on the living room floor!  I can't thank 'Lil's boyfriend enough.  He had the foresight, and calm disposition to take charge of the situation.  He kept my boy safe and put him in the recovery position when he had finished fitting.  Just in time for mum, 'Bob' throws up and starts thrashing about. The ambulance men were wonderful, 'Bob' was really uncooperative, thrashing around and he just kept on throwing up.  I really did feel like I was the one having an out of body experience looking down at him on the gurney.

We spent over 8 hours at the hospital and with a promise to come back in the morning to be discharged properly by the consultant, we headed home.  The start of another long journey for us!  Poor 'Bob' he was absolutely shattered, and so was I!!

Months have past and we haven't had any more 'déjà-vu' migraines or a seizure but the follow up appointment confirmed that my little man's experience was an epileptic seizure and further investigation needs to be done.  So more sticky pads entangled in his unruly mop! And of course this has an impact on everything else.  Nothing is straightforward!  'Bob's ADHD medication cannot be increased, wears off too quickly now and is having an impact on his afternoon lessons. Sensory issues are increasing and this increases his anxiety well that one is another story! The one blessing is that we have managed to persuade 'Bob' to get back into his high bed; After the seizure his anxiety went through the roof he thought another one would happen when he was in bed so he took his mattress off and put it on the floor.  That's where he had slept since July.

If somebody had mentioned co-morbidity before I'm not sure I would have paid much attention, but I sure am sitting upright and paying attention now.  Never mind the wet fish, get me a cold flannel, feathered fan and a cabaña boy!  We are going to have to make changes in school (another meeting!), changes at home (this one SHOULD be easy!) and in fact changes in just about everything we do.  I don't see another fight on the immediate horizon, I see some blending needs to be done with what we've got it and I feel it will be like putting on a new pair of glasses, seeing clearer the job in hand!  We will have a new set of professionals to become acquainted with, and one service we have never ventured in Occupational Therapy.  'Bob' and I will be putting together a sensory bag not box for the car; with one of his blankets, some food and drink, and a little something which might help calm him down.  We've just got to get over the anxiety of actually having one in the car;

"For goodness sake I'm 15 Mum!"

 Need I say anymore...Teenagers!