On Saturday we finally had our appointment at The Institute of Functional Neuroscience. This was the appointment we'd had to cancel a few days earlier because of a tummy bug which hit me like a bolt of lightning. That was the first medical appointment I had cancelled since the day Cameron got sick.
The Institute of Functional Neuroscience is lead by Dr Randy Beck who is a Functional Neurologist, working with other doctors around the world with the newest technologies, is working with the belief that our brains have plasticity and therefore can change the way they work after trauma or change.
With My Little Angel off having fun with her grandparents, Cameron, My Marvellous Man and myself arrived on time for what felt like a turning point in our lives. We walked nervously into the waiting room and joined two other patients waiting. They were quickly ushered in and two more patients arrived. It seemed busy and yet there was an incredible sense of calm - despite the power cutting out several times and thus the computers grinding to a halt.
Our turn came and we walked into a simple room with a chiropractors couch, desk, chairs and some shelves with various medical gadgets. The neurology registrar we were meeting was really lovely and quickly set about collecting a detailed medical history, by hand because her computer didn't work. We discussed everything from how long Cameron was in a coma when he had Pneumococcal Meningitis to who in our families suffered from anxiety.
Cameron sat quietly in his seat for an incredibly long time and observed. He'd nod along with the conversation and seemed to stay totally focused on what we were discussing.
Every now and then a question was asked but I realized that our experience was probably different to what our answers implied so I'd stop and explain what it meant to us. Such as seizures. Generally when people ask about seizures they are thinking about someone dropping to the floor and having a seizure for seconds to maybe a few minutes. I didn't want this doctor to misunderstand so I took pains to explain that Cameron's seizures usually went for hours and only stopped after ambulance dashes to emergency and much medical intervention. It was so refreshing when I realized she was listening and not disagreeing with me.
After her pile of forms were full she excused herself to speak with the specialist. They both returned to speak to us. He said he wanted to run a QEEG but from reading our information he felt that the area of the brain that he wanted to stimulate and assess could trigger a seizure. Were we okay with that?
After a year and a half without a seizure you can imagine the knot in my stomach. Quickly my brain calculated my next three days. Was there anything booked that was so important that I couldn't be in hospital? We had plans but they were all social and really, my birthday was not as important as finding out what Cameron's brain is capable of.
The doctor assured us that three staff had been put on alert and the receptionist had been told she would have to call an ambulance. He had actually read our information and taken it seriously. He even asked which hospital we would want Cameron taken to.
Next was the physical examination. Cameron was quite pleased to be finally involved and was in top form. For the first time ever we didn't have to hold his head when she looked in his ears or eyes. He thought the reflex hammer was hilarious and convinced her to give him a turn. Then we moved on to harder tasks for Cameron such as turning his hands over and up and walking across the room - flat footed, on toes and on heels. I don't know what this doctor thought of us but we were in shock as Cameron concentrated and tried really hard to do things he has never done before.
Ironically when Cameron learnt to walk he used to walk on his toes and I would be forever pushing him down on his shoulders. Toe walking is not good. The habit broke and of course now he can't do it. But with encouragement and patience he managed to walk across the room twice on his toes - our mouths dropped open. Heel walking was a lot harder and eventually she gave up and sat him down. Patiently she taught him to flex his foot backwards and again we sat stunned as he clumsily pulled his foot up.
I don't know what it was but there was an atmosphere of positivity which Cameron tapped into and you had this sense of - anything is possible.
Eventually the physical examination was over and again the doctor took her notes to the specialist. With his blessing we moved on to the QEEG.
Now we moved into a smaller room again with a couch, desk, chairs, and some medical gadgets. Quickly Cameron was sat in a swivel desk chair, which he loved and his head was fitted with what looked like a swimming cap with dots all over it. A strap was placed around his chest and then gel was placed into each of the dots on the cap. As we watched, the computer screen had empty circles on an oval picture and they started to become red and then orange and finally yellow. Yellow meant they were ready to conduct information.
We sat on the couch and chatted with the two people working with Cameron as they distracted him with a book and kept him calm so the data they were collecting would be reliable. It took about 10 minutes and was so easy.
In the past when Cameron has had EEG's it has been a horrendous experience with most of the previous night spent awake because he needs to be sleep deprived. Then only one of us is allowed in with him and it takes ages to attach carefully measured electrodes to his head which must be perfectly clean. Then we endure at least an hour of sitting in the dark while Cameron refuses to sleep and keeps trying to get off the couch and generally not co-operate. At the end of it all three of us are exhausted and extremely tired. We take it in turns for who gets to sit in the dark.
This was so different, we were all chatting and just sitting in a room together relaxed. I was amazed when ten minutes was over and the specialist was brought in to take a look at the data and give his approval. Cap off - it was all over. Cameron thought it had been great fun.
Back we went to the registrar for the next discussion. What to do while we waited for the test results. They have three supplements which they like their patients to take - fish oil, vitamin B and a multivitamin - to prepared the brain for what work will hopefully be ahead. We also needed to learn how to breath properly to get oxygen to the brain. It's not hard - breath in through your nose, hold your breathe for five seconds and then exhale through your mouth. Easy! Hmmmmmmmm
Poor Cameron couldn't figure out what was going on and struggled just to keep his mouth closed. Then he wouldn't breath at all just held his breathe. We held his lips closed and then his nose, eventually he had a little success.
The appointment was over and it was time to book in for the QEEG results. I thought we had to wait a month so was shocked when she asked if we were free on Wednesday. So fast - I'm not used to medical results being so fast. The appointment was booked, money paid and supplements collected and after three hours we wandered out to the car amazed at what we had just experienced.
We collected My Little Angel and headed home and very quickly realized that Cameron was just not right. He was confused, angry and avoiding eye contact. We had plans but he wanted to watch The Wiggles and throw Lego blocks. We let him do what he needed to do and after about an hour and a half we watched his eyes soften and his demeanour calm. Clearly the three hour experience had been draining for him and quite possibly the QEEG had irritated his brain. We didn't rush him because we didn't want to trigger a seizure - eventually we headed out and he was fine.
That appointment was the first time we had ever stepped outside the hospital system apart from mainstream and alternative therapies. It felt strange but at the same time liberating - we were trusting our instinct and taking a step towards independence which is huge for us. We have always been guided by the hospital doctors who have done a wonderful job of keeping Cameron alive but it's time to see what else we can do.