Low Level Light Therapy for Cognition

Yesterday I bought a low-level infrared LED light that directs the light up your nose and into your brain. I know right?? Thank goodness I have an amazing, supportive husband, who trusts my research and my decisions. It was just a couple days ago that I was saying to him that we should tighten up the bootstraps a bit for summer, but money spent on trying to heal our son doesn’t really count. This is the biggest purchase we have made to date, but over the last 5 years, we have tried many expensive supplements. None of which is covered by OHIP. We still  put expensive transdermal creams on him that we have sent from the United States – as well as some expensive specialty supplements. I absolutely know that this light may not work, but my research has led me to strongly believe that it will not hurt and it may help – and there is only one way to find out.

This is called Photobiomodulation. It was originally called Low Level Laser Therapy (LLLT), which was changed to Low Level Light Therapy (LLLT) – with the introduction of LED options on the market. There is research on the effectiveness of laser or light therapy that dates to the 70’s. Cytochrome c oxidase, which is an enzyme in the mitochondrial respiratory change; is an enzyme that we want working. (Remember from Science class that every cell has a mitochondrion. They are the powerhouses of the cell). The presence of nitrous oxide will inhibit the action of this enzyme (not good). Nitrous oxide can be broken down by photons of light. “The removal of the nitrous oxide allows more oxygen to be consumed, more glucose to be metabolized and more ATP to be produced by the mitochondria. ATP is needed for literally everything, including healing.” [Hamblin. Shining the Light on Photobiomodulation for brain disorders]

But there is more to the story than this because light therapy also has long lasting effects that can not be explained by the increased ATP alone. The long-lasting effects “can only be explained by activation of signaling pathways and transcription factors – that cause changes in protein expression”. Changes in protein expression can lead to more permanent changes. Light therapy has been shown to improve cognition. [Hamblin]

We could have chosen to go to a clinic in Toronto, rather than purchase an at-home device.  A friend of mine brings her son there, and they rent the machine for $450/month. It costs $12 000 to buy. This is a monochromatic laser -this means that all light produced by the laser is a single specific wavelength. Most of the existing studies use these monochromatic lasers as opposed to the newer and cheaper (like the one I bought) LED lights. LED lights emit light at wider band spread. The jury is still out on whether LED is as effective as laser therapy, but there are studies to indicate they are also an effective treatment option. [Naeser. Improved cognitive function after transcranial, light-emitting diode treatments in chronic traumatic brain injury].

                        How many of us feel the pull of unproven theories and treatments? I just watched a video from an episode of Superhuman called Hunting Down His Son’s Killer. This father uses his computer skills to figure out the cause of his son’s seizures, what drug to repurpose and he connects with other around the world with the same condition. Wow – the power of love is tremendous. He said something in the video that I relate to “Science itself becomes the medicine that you take, when there is no medicine that you can”

We may feel foolish for even trying, but what else do we have? We need the hope that these new treatment possibilities give us. Knowing that there will be another treatment to try if this one fails, is what gets me through the day. #nevergivingup. We all worried that we are getting sold snake oil, but what is considered snake oil one day may be considered a legitimate treatment the next. There are many failures out there, but innovative thinking continues. The motivating factor is mainly money. Yes, those innovative thinkers want to do a good thing, and cure cancer or treat Epilepsy, but they also want to make a living doing so. Some of the nay-saying and skepticism will come directly from the pharmaceutical industry and their affiliates. They are heavily invested in protecting the status quo.

My philosophy has always been ‘First Do No Harm’ – the Hippocratic oath. It is this philosophy that compelled me to try the Ketogenic Diet, under supervision of his neurologist, before trying medication (More on that later). And it is that same philosophy that allows me to feel comfortable about trying Low Level Light Therapy.

                Everyday that the phone doesn’t ring is a good day.  As each hour passes without incident my day improves. Status quo has become the most beautiful thing in the world…. And there is a blessing in that. Before Declan’s seizures started at seven years old, I worried about the most mundane things, but now, mundane is glorious. This allows me to access myself in a more peaceful and meditative way – that my busy mind was previously unable to do.

 Don’t get me wrong – I still have a very busy mind. I think through data a large portion of my day. If Declan has a seizure. I think about everything we did that day, everything he said. I think about if he told me he was tired or if f I saw him go to the bathroom. I take note if he was upset about anything or if I lost my cool with him. I think about what he has eater or not eaten. I think about what supplements I have given him that day. I take special note of anything new that he had or experienced.  I look for patterns. I rework theories. I shape them and meld them in my brain. I challenge my assumptions.

 My quest to learn about as much about Epilepsy, the brain, inflammation, the immune system – I’m sure is a lifelong quest. I will never give up (#nevergivingup). There will always be something new we can try, or a drug or treatment that we can remove – if we are headed in the right direction I am happy – I have gotten to a point that I can live with the disorder, where it’s very existence doesn’t defeat and destroy me daily. Note that I said – if we are headed in the right direction. I do not feel I could cope with true disaster. In the grand scheme of things I know that we have been very lucky. We have a happy boy, who can go to school, take fun vacations, live life. We are blessed. For anyone who has lost a child or a child where the quality of life is so poor that it breaks your heart – I’m so sorry. My heart breaks for all the families that are going through or have gone through way worse than we have.

 I went through all the stages of grief when this started. I was in denial that it was serious. I questioned the Doctors about everything. I demanded to know how this had happened. I was incredulous to hear that they had no theories of why this happened – and five years later we are no closer to finding out.  

Then I was very angry. I was angry about the possible reasons that I dug up. In the absence of professional theories as to why – I put my scientific brain to good use and read everything I could get my hands on. – there will be future blog posts that focus on my theories and musings – but in short I think that his condition relates to gut health (or lack thereof), a hyperactive immune system as well as or possibly due to toxic overload and likely genetic susceptibility.  I was angry about what I read. About a world, where profit is the boss; a world where government depends on the finances from companies; companies that are in the business of man made chemicals and their use and proliferation.

 Next, I was profoundly sad, completely broken, undone. I wept. I screamed. At home, I sat in the bath and cred until I had no more tears. At work – when someone would ask me how Declan is – immediately the tears would spring to my eyes.

 And finally, I have some acceptance. I have a way to enjoy life again. When he is not seizing I revel in the beauty of the world around me – I am getting to know myself better and better. I have more time to reflect and be by myself than I have ever had before, as a parent. When the seizures return (daytime ones were gone for a year, but have recently returned) – I dive into it.  I take care of Declan. I give him all of me – and we get through the crisis. Then I sit with my sadness. I sometimes have a cry, but not always.  I don’t usually feel anger anymore, but when I do, I acknowledge that feeling and then put it in its box. I usually bathe or spend some time in nature. I sometimes connect with spirit, universal energy, god – whatever you want to call it. I have found faith: Faith in myself, faith in our love to get us through this and faith In the universe to guide me there.

Acceptance -  I am still working on. I have partial acceptance. I accept that this is my life purpose.  I accept that this life trial – and all that it may still entail – are a necessary part of my spiritual journey. I just watched a documentary called ‘Ram Dass – Going Home’.  Ram Dass is a spiritual author and speaker who has since suffered a stroke.  I leave you with a quote from him

“Suffering is the sandpaper, from the spiritual point of view, that is awakening people. Once you start to awaken, you re-perceive your own suffering, and start to work with it as a vehicle for more awakening.  – God comes to the hungry in the form of food”