There was a sense of unrest in our house today. We were so busy not thinking about it and not allowing our hopes to get too high that nerves became a little frayed. Today was a big day and it scared us a little.
With My Little Angel safe with her grandparents we arrived again at The Institute of Functional Neuroscience. Today our appointment was with Dr Randy Beck.
He showed us a collection of colourful print outs which were the data from Cameron's QEEG. We spent quite a while looking at lots of different head shaped circles coloured blue, green, yellow and red. The not unexpected bad news was that Cameron's brain is not working like another teenage boy his age. The QEEG was able to show us where Cameron's seizures occur and then the surprising news was that Cameron has two areas of his brain which have seizures. We also learnt that Cameron's inhibitors are not working and that is why when he has a seizure it doesn't stop. Finally we know why his seizures are so long.
A very abridged version of the coloured circles. Red is overactive, blue is under active and green is normal. Cameron's whole brain is overactive which is why he sleeps twelve hours every night and sometimes is unimpressed to be woken up. He's exhausted because his brain is working so hard all the time. However at another level Cameron's brain is blue - under active. He is delayed in responding because it takes so long for his brain to process what it has to do. This is our Cam, anybody who knows Cam knows this.
The good news is that there are sections which are green and that is wonderful. And again, anyone who knows Cameron knows that a lot is going in but it just can't get out.
As our discussions continued Dr Beck answered every question we threw at him from medication and supplements to why Cameron has suddenly developed body odour after sixteen years of never sweating. His understanding of Cameron's situation grew. A few little tests were conducted so he could gauge Cameron's abilities and he was ever watchful as Cameron observed us and then joined in the discussion, in his own way. As usual Cameron was charming.
So what did this all mean - is there anything we can do or is it too late and too hard?
Dr Beck has offered no false promises but an evolving educated plan and if we can't achieve our dreams we will at least improve Cameron's quality of life. Cameron is a challenge and unique but there is hope so that is the good news. He is going to analyse the QEEG data further for greater clarification.
The treatment which would normally be advised can not be done with Cameron because of the two seizure areas so we have to work around them slowly and hopefully reduce the likelihood of seizures before moving in and doing what would normally be done. This is going to take a long time, possibly six months.
We are about to become a fixture at The Institute of Functional Neuroscience. For the next month we have three appointments a week then I guess we will reassess and make the next plan. Another supplement was added to the three we started on Saturday and we've decided to stop the supplement we were independently giving him so we can see clearly what is happening and not inadvertently undo what we are doing.
As well as the tablets Cameron has what we are calling his other medicine. At the moment he has two things he has to do every day to directly trigger certain parts of the brain. Everything is very carefully planned. He has to squeeze and bounce a ball with his left hand and he has to identify a picture from three picture cards twice - morning and night.
He had his first treatment in the surgery and you should have heard the giggling - it tickled. Cameron's giggling explained the patients, before us, long giggling session. I've never sat in a doctors waiting room before and heard a young child giggle and giggle and giggle from the consulting room.
The giggling was from body manipulations which were done down his left side from toe to head. Then he had vibrations down his right side. I know it all sounds a little strange but every single little thing was discussed and is for a very specific reason. Everything will trigger specific sections of the brain to hopefully encourage it to work normally - or turn green on the next QEEG.
Cameron is so at peace when we visit this surgery and everyone is incredibly nice. No question is considered silly and our concerns are heard. When our appointment was over and Dr Beck was saying goodbye there was no patient doctor stiffness, he threw his arms around me and told me what an amazing job we had done and told Cameron he was incredibly lucky, some parents would have given up. My Marvellous Man also got a hug.
I hope I'm not grasping at thin air and what I am seeing and hearing is true because as we drove away and tears started to stream down my face I felt this incredible sense of relief. We have finally found what we have been searching for. I looked over at Cameron who was very concerned that I was crying and I looked into his beautiful eyes and I know that we are going to find that key and unlock that door and let him out. He's there, patiently waiting and I can't wait.