On Ophthalmology

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As everyone here in London is just Getting On With Life as if cover wasn’t a thing, there was pressure to take Mikaere into his Ophthalmology appointment. You can’t really do ophthalmology over zoom, and it’s been two years so… yes. With much anxiety and mask wearing (even Mikaere) we went and saw his ophthalmologist.

Mikaere has CVI (cortical vision impairment). We know that. It’s not clear what he can see, what connections are getting through to his brain. There’s also an issue with the tone of the muscles around his eyes, which means one eye floats in a bit (it’s called strabismus). We also found out this time that his eyes are oval shaped – called astigmatism. That’s not NKH related, as Sam has that too. Mikaere is also long sighted. So it’s all a bit complicated, but mostly fine.

The lovely ophthalmologist looked at Mikaere’s eyes, and shone various lights and made some decisions. Mikaere thought it was generally hilarious, and was very cheeky, holding still just long enough for her to almost get her readings, and then turning away with a laugh (he thinks he’s hilarious!)

Anyway, the short of it is Mikaere’s getting glasses. Again. He actually had glasses briefly almost two years ago, but after a while he refused to wear them. The ophthalmologist then said it’s likely that his eyes changed shape and the script was likely off. He was right, I guess.

But awkwardly because of Covid, the spectacle dispensing office was closed, and so we need to wait for another appointment to have a fitting.

Still, I feel like it was good to go, and novel for Mikaere to be out and about and meet people outside our bubble (!)  I guess stay tuned for the glasses reveal?

#disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #teamMikaere #glycineencephalopathy #nkhcansuckit #someoneFundACure #cureNeeded #disabledparenting #disabled #disabledfamily #complexmedicalneeds #metabolicdisorder #nkh #spectacles #strabismus #astigmatism #eyeCare

On the days following our A&E visit

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Mikaere’s been a bit flat since our a&e visit. Many hours sleeping, but he has some active/awake time. As It’s so warm, we’re out on the balcony for portions of the day, when he’s up for it, willing the breeze to blow our way. Warm weather is always bitter sweet for us, it’s delicious but the risk of seizures increases.
So we pulled out the cool blanket, the magic mat that’s filled with gel, so it’s cool to the touch. It lasts for about 15 minutes, and then you move to a new spot. It’s worked wonders to keep Mikaere cool.
We’re still not comfortable going out into the world, and the pictures of everyone else enjoying their break at the beach or in crowds of just, out an about with a bit of normality has me feeling very green. But onwards we go, enjoying the balcony, a bit of water in a tray, paddling pool static nonsense.
Onwards we go. Managed to get some smiles, even 🙂

The correlation between heat and seizures.

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Another warm day, another day of seizures and struggle. He has both a portable ac unit and a fan pointed at him. He’s lying on the floor because it’s 1.4 degrees cooler than the couch, or a chair. I love the warmer weather, but not when it causes seizures. They’re happening every few hours. Just long enough for a recovery nap and some minor awake/aware time before another one hits. Blah.

Seizures are the thief of everything, and I hate them. They take away so much. At this point, what kind of quality of life is this? Seizing and recovering, not moving, no joy.

This is what NKH looks like. Seizures because it’s warm. The brain damage that’s happening in my little guys brain because of a tiny tiny mutation which fucks up a large chunk of his carbon folate metabolic system….

Living the super special needs life atm. We’re one of many, our story is standard, not exceptional. But that doesn’t make it any less heartbreaking 🙁

On the Respiratory Care Plan

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One of the things we’ve added to our Keep-Mikaere-well line up is a daily nebuliser. It helps loosen any secretions in his chest and with some chest percussions and suction we’re able to remove some of what he isn’t able to do by himself.

This is one of those my-kid-has-low-tone things. Because he’s not upright, because he’s not moving himself about, his body doesn’t manage secretions and mucus the same way. The fight we went through to get the neb + the respiratory care plan was ridiculous. Requesting a referral to the respiratory team was a nightmare. We already have oxygen at home – which came from palliative, not respiratory – but if you have a kid who needs oxygen at home, SURELY it makes sense to be under a respiratory service?! There was months of asking and waiting and justifying and emailing and chasing up.  Honestly, the underfunded NHS has a lot to answer for.

But eventually, months and months after requesting we FINALLY got an appointment. We went, and we talked to a big fancy consultant who was very blasé because Mikaere has a metabolic based disorder, and not a respiratory based one. There is nothing wrong with his lungs, per say. Just his tone.

But, with his tone, he’s not always able to cough. And if he can’t cough, and mucus blocks his airway, his body overreacts, he gags and then vomits. This is clear problem (I talk about the daily vomits all the time, so you know this is a problem for us). So, we it talk through with the consultant, and then we’re palmed off to the nursing team.  I’m not sad about this, because anyone who has spent time in a hospital setting knows that it’s ALWAYS run by the nurses. The respiratory nurses were amazing and smart and in half the time of the consult we had a plan and things to try.

Thus, this daily nebuliser.  It’s not a short, easy add, though. It takes 15 minutes of entertainment in a chair, battling his little fingers as he tries to pull the mask off. Chest percussion is awful, he hates it (firmly ‘clapping’ your child while he cries is not fun for anyone. And before anyone gets on our grill, we have respiratory physios and nurses overseeing this particular bit of care). And then suction. We literally put a thin tube up Mikaere’s nose and down the back of his throat to suck out the secretions there, and then I hope that might cause him to might cough and we’ll catch the mucus and suck it out of his mouth. Sometimes we’re successful and his breathing sounds clear afterwords. Sometimes it’s less so and he sounds like he’s snoring because there is a stubborn mucus plug in his airway that I can’t get to.

But I have to say, I think the added care has helped. It’s not always an easy thing to fit in, but on days that he’s poorly and has a snotty nose – it makes the WORLD of difference. I think it’s just another thing we’re doing to help keep Mikaere as well as we possibly can.

Nebulisers and suctioning mucus plugs. Oh special needs life.

On the Emotional Struggle

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There was an article I read a while ago, which was shared all over the special needs community. PTSD Helps Parents Keep Their Medically Fragile Children Alive — But At What Cost?

It was validating, I guess, but not super helpful. The main point is that the ongoing strain of the special needs life causes intense stress resulting in PTSD. There was a comparison that treating PTSD in special needs parents was similar to treating it in service members engaged in active combat.

However, the ‘how to deal with stress’ or PTSD advice was low on the ground, or as the article put it: there are ‘financial or logistical barriers’ to carers receiving care.

And I get that. I don’t know when I’m meant to fit in self care in Mikaere’s day (don’t tell me the line about how important it is, because I don’t want to hear it – I already KNOW it. Not knowing how important it is not my problem). Truth: I also don’t have the funds for the care, or the funds needed to pay for a nurse while I go to do whatever it is. Just as a comparison: I have had my hair cut exactly twice this year, both times when I was away without Sam and Kai, that I saved up over MONTHS for. If I can’t manage a haircut while taking care of Mikaere I couldn’t see myself managing regular therapy.

(Side note: I want to clarify that we get couples therapy through our hospice, specifically to tackle bereavement and the special needs life. Our therapist comes to us so we don’t need to worry about care for Mikaere. It’s also paid for by our hospice, which we’re grateful for. But a session every few weeks is helpful when you’re in a safe space and maintaining, but in our life too much happens for us ever to get to the ‘maintaining’ part of things. We’re always tackling the next crisis).

Thing is,  I cycle through the occasional periods of ‘I’m fine, look at me do all the things’ with the debilitating downsides of extreme and chronic grief and depression. I’m going to pause here for a moment, because it feels weird to admit this at large to the internet. But the truth is, children have died. Many children, that we knew and love. My child will one day die, and I don’t know whether that’s soon, or not soon (both realities are inconceivably scary). If you add in the sleep deprivation from around the clock care, and the relentless day-to-day appointments and therapy, I think extreme and chronic grief and depression is an appropriate response.

The thing is, when I’m so down, doing anything other than taking care of Mikaere is tough. (Side note: I will never be so down that I can’t care for my son. He will always get the meds and feeds and care he needs, because idea that his already limited life should be anything less because of my feelings is impossible and will not happen).

I just… I feel like my emotions are raw, just under the surface all the time. It comes with all the shame and guilt and feelings like I should be better at holding it all together. I should be better for Mikaere. (To be clear, again, in case any stranger on the internet feels the need to DM me with their concerns  – his needs always come ahead of mine, because if they don’t he’ll go into a seizure coma and die. Even in my deepest darkest abyss, I’ve will never not be able to take care of him).

You guys… so many children we care about have died. I talk about this all of the time, but I’m really struggling with it. There are big gapping holes in my heart. My child is so disabled and his disorder is terminal – the phrase ‘all is right with the world’ will never again be relevant to me. I’m constantly fighting for the next thing, constantly trying to figure how to get more for Mikaere, how to keep our little ship afloat, keep him happy and healthy. How I’m meant to hold on to the happy when our day to days are so stressful is beyond me.

I’m at a loss. I feel like I basically need to find another outlet for my emotions. I think about the gym. I think about more 1-1 therapy. I think about how we’re a single income family and how I’m meant to find time and money to do these things and the idea of finding time in Mikaere’s schedule and organising care… it seems impossible.

And then I mentioned it to our Homestart Worker. Homestart are charity, and they have a therapist who does pro-bono sessions.  And now I’m set to see a therapist. I’m nervous, not really sure about how it’s going to go. I’m also really nervous about unpacking all the feelings from the last three years that I’ve packed waaaay down so I can get on with my day to day.

I’m scared to stay where I am, in the infeasible present, and I’m scared to start therapy, and facing the giant mess of grief I’m holding tight. I don’t fully understand how people navigate the world of pallative and grief and special needs without crumbling. The last three years have been so brutal. Facing more years seems huge (and idea of not facing more years seems impossibly crushing).

If someone has a magic wand they could wave, that’s the solution I could use right now. (Or you can fundraise/donate towards a cure. I’m shaving my head for NKH research, so yeah. Donations would work too).


On the vomiting & the PH Study

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Oh the vomiting. I feel like it’s one of the invisible parts of our life, but Mikaere vomits EVERY DAY. Everyday the gagging, and the vomit and the changing and washing and comforting.

We carry towels around with us (most which have ever so slightly off colour splotches). We have a change of clothes for him, and for us. Vomit and the discomfort of vomiting is our day to day, and has been since February 2018.

Can we just take a minute and talk about how awful that is? How uncomfortable for Mikaere, how sad and smelly and gross and just, awful?

How happy would you be, if you vomited everyday? Tasting the bile, feeling it rise up the back of your throat? Knowing that day after day you wouldn’t be able to keep anything down? And no choice but the vomit, not able to communicate that you feels nauseous, not able to move your body into a more comfortable position.

How is that acceptable? How is that quality of life?

It’s not. No one seems as upset about it as I am.  It’s taken a year and half for anyone to investigate. A year and half of me speaking about it with every single medical professional on our team, insisting that this is not okay, asking for help, asking what else we can do, asking for more for better.

Then our gastro follow up for the gastrostony that we had in Feb 2018 was set for April 2020. Because the gastro Service at our local hospital is chronically underfunded and there is no consultant to see us.

This week we finally, finally had a ph study. It’s the very first step in understanding how much vomiting/reflux is happening. It’s only for 24 hours and requires a prob is put down Kai’s nose (and an X-ray to confirm correct placement).

It’s frustrating. We already know he’s vomiting, we already know he has reflux, and we know this because we take detailed logs of everything Kai does. I’m not sure whether they think I’m a hysterical mama bear whose making it up, or whether my data is just inaccurate (or are they just doing their due diligence?) but regardless, a step has been taken. Something has happened, and I’m hopeful that that something results in a review which will then kick off a bigger investigation.

My fear is that there is no reason. Or the reason is something stupid like the surgeon hitched the gastrostomy too high.

We’ll see. I’m grateful something has happened though, even if that something was a redundant waste of time. If it means someone is looking at its data and recommending a review, it will be worth it.


On the ABM intensive

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One of the new therapies we’ve tried recently is the Anat Baniel Method. It’s a lovely therapy that meets Mikaere where he is, that doesn’t force him to do anything, but builds on his current skill set.

It’s a bit like magic, to be honest. We went away with another special needs family down to the Isle of Wight where there is an amazing Anat Baniel therapist – Michelle Wheatley. She’s positively lovely. She also lives the special needs life, so she *gets it*. She also is able to interact with Kaikai with love and care and intention, which I appreciate.

So many of therapists force Mikaere through their intended programme without first taking stock of what kind of day he’s having. Michelle always starts with Mikaere. How he’s doing, what kind of day he’s having, what he’s interested in, the kind of movements he’s making. I love that. I love that it’s the kind of therapy that focuses purely on where he is right now.

I do want to say that while I trust the method, and I like Michelle a lot – I feel like a lot of ABM practitioners are about the money. I’d also even go as far and say for Anat Baniel herself, the leading lady is only about the glory and the dollar signs. That *frustrates* me so much, that there are so many practitioners who are taking advantage of special needs families. (Not all, mind. Michelle for example is affordable and a genuinely lovely person).

But we’ve seen gains with ABM. Mikaere rolling over, beginning to sit up, started tolerating tummy time, started being more intentional with a handful of movements he’d practiced with Michelle – it was pretty mind blowing .

It’s also a bit frustrating, because if we hadn’t seen gains I could have left that awful ABM culture where London appointments are £125+ for 45 minutes behind and focused on something else.

Still. We *have* seen gains. That’s what I’m holding on to. So we’ve been down a few times, driving down to the Isle of Wight for a week for an intensive. Its amazing being there. Its amazing for all of us, for our mental health and emotional wellbeing to be out of the constant therapy/appointment loop. Beach walks definitely help.

So ABM. I’d recommend it, but not at the ridiculous prices some practitioners charge. (If you’re in the UK, I would highly recommend Michelle. More information about her practice at www.brainbodysense.co.uk


Drinking shouldn’t be a Coping and Resilience Strategy

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Following up on that last post, I want to talk about how I went to a ‘Coping and Resilience Strategies’ talk at our special needs playgroup centre a while back (way way back). You’d think it would have been well timed, right?

There was an educational psychologist who had a special needs son who had come to talk to parents like us. She was ten years ahead in her special needs journey and felt she was able to come chat to us. Perhaps it was that I was the only parent there with a terminal diagnosis, and one of the few who was regularly receiving announcements of other children we knew who had died, but her talk didn’t resonate with me.

First, she talked about coping. I think there is a huge difference between coping (which we all do out of necessity to keep our children safe and alive) and coping well.

I’m not coping well. And you can tell. I’m snappy, unfocused, and go from fine to deep deep in the abyss. In the meantime I have to hustle to get myself moving, but that hustle has zero results, I’m hustling but I’m a mess. I’m easily distracted and really have to force myself with lists and checks to make sure Mikaere’s needs are met (I’m not talking about his basic needs, I can do feeds, nappy changes and meds and appointments with my eyes closed. I’m talking about chasing up that gastro and respiratory referral that went nowhere, calling back the wheelchair lady who called to book an assessment and his anti-epileptic dose needs increasing and I should reach out to the neurologist and I need to chase the nerve/skin biopsy sample to make sure the fibroblasts get to the researcher, and I need the community nurse to update the gp with his latest doses cause the pharmacy got a prescription with the wrong ones last week. The OT needs chasing, because he’s due another block, and his chair needs a new pommel/groin strap that makes his current chair unsafe. Can I fit in more CME or ABM? I need to chase the therapist…) That stuff, the never ending special needs loose ends that would fly off into the wind if I’m not careful).

But it’s work. It’s work that requires attention to detail and focus and time and I have none of those things. At first I was all make it achievable. Do five things. Just five. But then Kai had a seizure or an unexpected therapist showed up on the wrong day or the carer was sick and couldn’t come and my day was derailed. My days are always derailed.

So come 3pm and I haven’t eaten and am only half dressed (despite the three therapy appointments we’ve already had) and I need to hustle to get Kai down for a nap and still do his blend before 6pm and just… I’m struggling. I’m struggling. It’s all hands on deck, what do I need to do to get through.

Anyway, back to that talk. She didn’t give us strategies for coping. She asked US to provide strategies. Shut up. I have no strategies, which is why I came to the damn talk. I want to know what it is I can do that fits in Kai’s day that’s affordable that I can do.

There weren’t many. Exercise and therapy and socialising (aka, drinking. Not even kidding). But they’re all things that get cancelled on a derailed day, and our days are often derailed. The main thing on the list that I could do was drink. I’m not even kidding. But I can’t use alcohol as a coping strategy because I need to be sober for Kai.

After the not very helpful talk I went to the local pub with a handful of other social needs parents. I drank gin and bitched about the inefficiency of the NHS central booking/appointment system, and nodded as other parents bitched about EHCP’s and having to fill out the DLA forms and fighting with their dieticians about the blended diet. It was beautiful. But that was one night, when my boy was safe at home with Sam and a nurse. That’s not a regular thing, and so sue me if I don’t want drinking to become my main coping mechanism.

My point is we live the special needs life. It’s hard. So hard. But we move forward out of necessity, because these are our kids lives. We cope out of necessity. We show up. But that doesn’t mean we’re coping well.

Coping well, that’s what I want to know how to do.

It occurs to me, that as I reach well over two years of living the special needs life, as he gets older and requires more support, and the support we get is less, I now understand why special needs parents ahead of us have the attitudes they do. They’ve been in the wars longer, they’re less green, and they don’t have answers either.

I don’t have any answers. Hey ho. Onwards we go.

On moving between fear and loss

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In the NKH Community there’s a death bandwagon that happens after a family announce their angel has gained their wings. Hundreds of messages are sent to the family. Publicly every NKH page has an announcement, with a picture. It takes over facebook, really. Hundreds of comments are left for the family, and hundreds of comments are sent to the people who posted about the community loss. They have prayers, and are sorry for all the losses and are sending so much love (I’ve said those platitudes too, no judgement here).

I’m not sure how I feel about this bandwagon – this giant flood of not so comforting posts. I’m torn.

I’ve been that poster. I’ve posted about more children passing than I would like too. I said I was devastated, and heartbroken and struggling. But truth is for most of the children I’ve posted about – I’d never met that child. I’d known them through the community, through the posts that their parents made. The pictures they put up. The messages they sent. Halle Mae. Kaleb. Mayanak. Cathryn. Gregory. Siem.

I say their names to remember them. They’re important, and they were so loved and will be fiercely missed.

But truth is, I never met them. I don’t have relationships with their parents. The grief of their parents I imagine is huge and very much theirs. But I don’t know them and I can’t know for sure. My grief? I didn’t know it at the time but my grief is fear that it will happen to my child. I posted about these children in such a blithe manner. I really did. I had feelings and I took to the internet (I still am, clearly).

But now I’ve had tiny insight to the other side. Alexander, a boy I knew in real life outside of the internet and met, several times in the last two years died. I adore his Mama, and we’d send messages and do visits and invite each other to the few social gatherings we arranged each year. We’re on each others Christmas Card Lists. I knew he was ill and visited when I could. I knew when it was days and couldn’t visit and it broke me. They graciously let us know when he’d gained his wings, and oh. I had a whole lot of complex feelings, and I felt so strongly for his parents. I struggled, and thought of him constantly.

It was raw, this grief. Because this grief wasn’t about my son, it wasn’t about how I felt about NKH, it wasn’t a fear that one day NKH will take Mikaere. This grief was about Alexander, the dent he’d made in our lives and the hole that exists where he was. I was feeling his loss, specifically. His loss, and such compassion and love for his parents and their loss.

And after his parents let the world know and the memorial posts came flooding in I wanted to tell everyone to shut up. I didn’t, of course. They have grief and feelings and love and none of it was malicious and they have every right to post and make videos and share their grief and they should absolutely do that.

After some gentle examination I worked how I was upset because I could see the difference in my posts. The difference between grief and my fear for Mikaere, and grief that’s because I feel the loss for Alexander specifically. I wanted to say the later feels more genuine, I don’t think that’s true. It’s grief. Complex and unwieldy. I don’t know if that difference even matters. My grief is all over the place, and I’m trying to think and feel my way through it.

I’m struggling. I don’t know how to feel about it. But I do know that I want you to know about it. Not my grief and my feelings but I want to talk about grief. I wish there was more open, genuine talk about grief and death. I can’t help but feel that if we as a society were more open to grief and death, and if we were okay to sit with the uncomfortable together for one hot minute without trying to shy away or fix the unfixable the burden might be less. That we might be able to sit together to remember the people who are important to us, that we could openly feel and say how grief is complex. How death is unfair and brutal and a relief and grace and there is anger and pain and love and hurt and it’s all mixed in together. That we can love and miss and grieve openly without someone telling us to pull it together, or hide it away.

And I get how crazy that is, because here I am trying desperately (and openly) trying to come to terms with my grief over and over and over. In one post after another. I’m trying to be open to feeling what I feel around grief and death. Right now it feels so wrong, and hurts and it’s heavy and huge. I can’t help but think there must be some other way (or rather, that there must be some better way forward for managing those feelings). That there is a way to have a better and healthier relationship with life, illness and death.

We’ll see. I’m sure there will be more posts on grief.

On QRI Laser Therapy for Reflex Integration

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One of the things we fundraised for was for Low Level Laser Therapy (LLLT) When I first heard about QRI from a few NKH Mums – I raised my eyebrows and thought ‘hogwash’.  Three months later I was on a train to Birmingham without my guys to learn how to do it. It is a bit… alternative. Very woo-woo. The website is very 90s and the copy on the website is very… holistic and intuitive. For someone who prefers decisive facts and firm science, it was a big leap to get to the point where I was okay to try it on my child.

Now before I get to the point where I’ve joined all the dots – here’s the thing: if there is no harm and there is possible benefits, I’m keen to try it. If it will help Mikaere and it definitely won’t hurt Mikaere, then the risk for trying is low. So we try it. That’s where I started – the possible benefit for Mikaere and his health was 100% greater than the possible risk (because other than time and cost, there is no risk. It’s just light).

So I went on faith. And lots of anecdotal kool aid success stories from other special needs parents.

I got on a train, paid several hundred US dollars and went to learn about a protocol that suggested that with lasers, I might be able to help my son hold up his head.

Here’s how it works. There are a few premises, so let’s start with those.

  1. The first premise is that cells in our body can take up energy from light. It’s called photobiomodulation. Essentially, there’s a step in the process that makes ATP that has a copper middle. Copper can absorb light in certain wavelengths to give it an ‘energy boost’.The Science, as I understand it: Each cell in our body has a little power factory, called mitochondria. It creates ATP, which is what powers every function in every cell in our body. Cytochrome C Oxidase (CCO) is a step in the mitochondrial electron transport chain – the part that helps make ATP.  It transfers one electron (from each of the four cytochrome c molecules), to a single oxygen molecule, producing two molecules of water. At the same time, four protons are moved across the mitochondrial membrane, producing a proton gradient that the ATP synthase enzyme needs to synthesize ATP. CCO has two heme centres and two copper centres. Each of these metal centres can exist in an oxidized or a reduced state, and these have different absorption spectra, meaning CCO can absorb light well into the NIR region (up to 950 nm). Which is to say wavelengths in the red (600–700 nm) and near-infrared (NIR, 770–1200 nm) spectral regions, can be absorbed by the CCO centres, which causes an increase in mitochondrial membrane potential (MMP) above normal baseline levels (increasing the amount of ATP made) and leads to a brief and rather modest increase in generation of reactive oxygen species (ROS) – which is a number of reactive molecules and free radicals derived from molecular oxygen. It’s used in a cell signalling and cell cycling.In a nutshell – given the right wavelengths of light, the mitochondria of a cell can absorb the photons from the laser, which stimulates the cell – increasing the ATP made and improving the signals between cells (amongst other things).
  2. The second premise is about reflexes.  We all have reflexes and they can be retained, preventing development. We all have a number of reflexes designed to help our bodies move through developmental phases. Reflex’s are held in what is called the Reflex Arc – it’s a neural pathway that controls a reflex. Most sensory neurones do not pass directly through the brain, but instead through the spinal cord. This allows for faster reflex actions to occur by activating spinal motor neurones without the delay of routing signals through the brain. When babies grow, the reflex triggers a certain number of movements automatically. These movements pave a set of neural pathways that, eventually, will allow the reflex to be integrated. Once a reflex is integrated, it’s no longer needed and the body will no longer use the reflex.Here’s the important bit: if there is an issue in the brain, or in the central nervous system (like, say because you have Nonketotic Hyperglycinemia) – these reflexes may not be integrated correctly or at all. They might be retained. If a reflex is retained, the child will not easily be able to progress. If they do progress, they’ll need to compensate for the retained reflex.
  3. The third premise is for reflexes that aren’t integrated can be integrated. Or rather, helped along. If reflexes are typically integrated with repeated movement, repeated, rhythmic movement (or, say, cell stimulation in particular points) may be able to help integrated reflexes by forming neuropathways. Even in brains with neural damage, on the idea that our brains have a certain amount of neuroplasticity, and if possible, they will find a way. This is where things get a bit more… flexible. But, I’m willing to give it a go. Especially because there are so many different success stories from other parents.

And so I went to a workshop held in Birmingham, and I had my first experience of laser therapy.

Woah. Buddy.

I sat through the entire half of the first morning and was so annoyed at myself. I was definitely wasting my time and I’d wasted so much money and I was very very very glad I had not spent thousands of pounds on a laser. The content was way to woo-woo. So far removed from science, and so far removed from what I knew and expected. I half listened, and tried to figure out if I could get a refund on my hotel and a train ticket back to London.

Then the ‘interactive’ part of the session happened. Where you test the reflexes of your partner, do the protocol, and then retest. I was positive I’d feel nothing (it’s just LED lights, I told myself) and that nothing would change.

Here’s the thing. I lay down, and almost instantly the lasers made my body relax even when my brain was still going a million miles an hour. What the heck. I’d never been in a situation where my body was calm and relaxed and my mind was not (it felt very very odd). You could feel your body responding to the lasers, so I kind of relaxed into it. Something was definitely happening, and there must be science behind it. I was sure. I was even more surprised when my reflexes had changed rather dramatically in the test afterwards – profoundly different from the before test.

It’s possible that it was psychoshamtic, but it’s also possible the laser was effective. Hard to know. So I stayed on, and that first night I went on an epic research deep dive. Here’s a small snippet of what I found.

  • LED study on that showed significant improvements in executive function and verbal memory of Chronic/Traumatic brain injury patients after LED/near infra-red light therapy. (Source)
  • LLLT decreased the muscle spasticity of children with spastic Cerebral Palsy (Source)
  • LLLT/photobiomodulation – cells exposed to low-levels of red and near-IR light from lasers or LEDs either stimulate or (less likely) inhibit cellular function, leading to reduction of cell and tissue death, improved wound healing, increasing repair of damage to soft tissue, nerves, bone, and cartilage, and relief for both acute and chronic pain and inflammation. (Source –  okay, so not a study, but I got half way through the references before I decided it was probably the most succinct version about LLLT)
  • Applying near-infrared light to the head of animals that have suffered traumatic brain injuries produces improvement in neurological functioning, reduces neuroinflammation, and stimulates the formation of new neurones (Source)
  • The rats subjected to 500 mW of laser irradiation had a significant decrease in glutamate, aspartate, and taurine in the cortex, and a significant decrease in hippocampal GABA (Source -this one’s helpful, because if there is a decrease in glutamate, the NMDA receptors which glycine binds to are less likely to fire)

They’re mostly the abstracts, because I don’t think I’m allowed to share openly the full studies, but there you go.

We got a laser and we’ve been working it into Mikaere’s routine. Sometimes we manage it, sometimes we don’t. We think we’ve seen some gains, but because we’re doing so much with Mikaere it’s hard to attribute it directly to the laser. We’ll see. I’ll keep you posted.