Wednesday, 5 October 2011

Change is in the Air

I have spent the last twelve months watching Cameron grow and change and fearing what I felt was the inevitable seizure waiting for me at any moment. My anxieties became extreme as we celebrated a year since his last seizure. It is now a year and a quarter and I've noticed my anxieties have decreased and I can now pop my head around his bedroom door without a knot in my stomach. The thought is always in my head but I look in and breathe a sigh of relief that he is sleeping peacefully.

It has been a slow and steady year. Cameron has discovered and tried new things, shown us that he is still learning and is ever more present and in the moment. In fact sometimes he gets the joke before others because he is quietly observing from the sidelines.

In the last week it feels like opportunities are opening up to us again and I haven't felt like that in a long time. For years we just careered from seizure to seizure, exhaustion to exhaustion, confusion to confusion. It has been amazing to watch what happens when Cameron's body is not being beaten and exhausted by seizures. However it also causes confusion.

For the last year and a half we have been trialling a supplement which is supposed to help Cameron's body grow new stem cells. With new stem cells the theory goes that he can regenerate damaged parts of his body - such as his brain. We're not sure if this has happened or not but he is certainly changing and he hasn't had a seizure. But .....

With the lack of seizures he hasn't had to increase his anti-seizure medications during the year and he has grown thus reducing the intensity of the medication on his system therefore his brain is less drugged. Is that why he is doing more and comprehending more or is it the supplement? In the past as he grew he had seizures because he outgrew his medication. Why hasn't this happened? But .......

After his last seizure we started to decrease one anti-seizure medication and we added a new medication. Is this why he is learning and changing and hasn't had a seizure? Who knows - we will probably never know. Therefore do we continue the supplement or not? It's very expensive.

Now we have the opportunity to have Cameron's brain assessed by a completely new team of doctors who work in the field of Functional Neurology. With a QEEG they will hopefully be able to assess if Cameron's brain is able to learn to speak and just what Cameron could and couldn't achieve. If they believe they can help Cameron's brain they will then offer us therapy. Is this extremely expensive process a pile of mumbo jumbo or ground breaking, leading research in the fields of the brain and neuroplasticity?

If Cameron follows the text books then I don't think he could learn to talk because his brain was damaged before it was developed and prepared for speech. If he had been able to receive this ground breaking new intervention straight after the brain damage then according to the text books it probably could have helped. But.........

For the last 15 years we have done everything we could find and think of to stimulate Cameron's brain. He has been to mainstream and alternative therapies, he has consumed fish oil by the gallons and taken supplements for his brain and body. We have kept his body moving and stimulated with swimming, horse riding, trampolines and other physical activities. We've steered him forward and never once said - he can't. Have we done enough to prepare and maintain his brain for this new field of research?

We know he's in there and it feels like we just have to find the key and unlock his brain. He understands way too much and has attempted words over the years that have left us speechless. Why can't he escape his prison? I've had this motherly sense that one day I will be having a conversation with my son but he will be big when this happens. It will be a mature conversation and he will probably tell me what he thinks of my parenting skills. (oh dear)

I think sometimes in life you have to follow your instinct and my instinct was to try the supplement which I think has helped Cameron. I've always believed that stem cell research is important and would help Cameron. Now my instinct is telling me that these new doctors know what they are talking about, even if the mainstream fraternity disapprove, and if Cameron can be helped they are the people to do it. I have read and believe in the plasticity of the brain. Cameron would be a vegetable if not for all the therapy and intervention he has endured and it feels like it was all leading to something and that something has finally arrived. I could be wrong but I trust my gut and it is screaming go for this. My gut was right about our Chiropractor and our Kinesiologist, fingers crossed my gut is right about Functional Neurology.

Now, I wonder if my gut could chose a winning lotto ticket to pay for it?


  1. I think you did the right thing trusting your gut instincts and it seems to have paid off for you. Do what you feel is right and from what you say it does seem to point to the Functional Neurology . Good luck to you both. Your doing a fantastic job xxx

  2. I appreciate that you are willing to share your journey and Cameron's with the world. I hope your story reaches out and helps some that might be dealing with a similar journey in life.

    i nominated you for a blog award. Please stop by my blog and get it. Two Boys On The Run

  3. Thanks Wendy, I think listening to my gut has been one of the many lessons I have learnt over Cameron's life. We're getting quite excited about his initial appointment next week.

    Hi Jess, I'm glad you are enjoying reading my blog. Thank you for the nomination I will pop over and see your blog. It may take me a couple of days to forward the award but I will get there eventually. Thank you for thinking of me.

  4. It's so important to think outside the box when treating complex kids, especially with fast-moving medical advances. Crossing my fingers for you & Cameron x

  5. Thanks Jane, I'm getting quietly excited and nervous. My fingers are very crossed.