Tag

treatment

Jun 21
0

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

 

Jun 17
0

On goodbye formula!

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One of the things that happened in the past year was we got Mikaere off formula and onto the blended diet. It wasn’t an easy decision and there were a few heated discussions with our dietician, but the long and short of it is that nutritionally complete formula had ingredients high in glycine in it. I’m not feeding my kid the very thing he can’t process. There is one formula that is glycine free, but it has other side effects that make it not worth trying.

And so, off we went, easing ourselves into the blended diet. I kept extensive spreadsheets for working out calorie intake and micronutrients. I was bit overwhelmed but I started small. One meal a day, at first. Meat, vege, a carb/grain along with some fats (lots of fats, avocado, coconut oil, peanut butter). After a while I added in prunes (as a natural laxative, so we could stop using the horrid movicol) and then I started throwing in some Brazil nuts, as selenium helps is an immune booster.

We moved to two meals a day. He was vomiting less, and seemed more aware. He was tolerating it like a champ!

After a few months I added a breakfast – weetabix, with fruit and honey, with coconut milk. The fruit changes morning to morning, depending on what’s in the fridge. When that became part of the routine it was just the night feed. Porridge, mostly. More fruit, more honey, more peanut butter.

Then I got a bit brazen, and sometimes I’ll change it up and Mikaere will eat what we eat, but blended.

Sometimes if I felt like he could use the extra calories I’ll add in a put of coconut/chocolate pudding (a whopping 100kcal per 45g!) to his feed (it goes through the tube which is why it’s okay to mix meat with chocolate like some kind of magic chilli mix. He never has to taste it). Or if we’re out, an nice dollop of olive oil.

The great thing about this is he started eating oral tasters. We’d still put the blend on through the tube, but he’ll have a savoury/sweet course. Blended, to a nice easily manageable purée. Bangers and mash. Chicken and lentil dhal. Caribbean jerk chicken.

Dessert is usually chocolate pudding or a fruit/yoghurt purée (guess which one he prefers?!)

Overall he’s put on weight, and is managing MUCH better on the blended diet than he could on formula.

So, blended diet wins for us. I don’t fully understand why the blended diet isn’t more wildly supportive, or why we had to fight with our dietician. (I think it’s because nutricia, who provide the button refuse to state their equipment is safe with the blended diet, but it’s because they also provide all the milk formulas, so encouraging business away from their products would be bad for business. If a manufacturer can’t recommend a particular practice, then I guess the NHS can’t? Even though it’s most cost effective for the NHS, often better for the children and with less processing and packaging, better for the environment?)

The other stupid thing is that if it didn’t work with the mickey button (the button between the tube and Mikaere’s stomach that works a bit like a tiny pipe into his belly) and it got blocked, all that would happen is that I’d deflate the balloon, pull the button out, clear the blockage and put it back in again.

Anyway, I fought the fight and I realised that essentially as long as I’m not causing any harm it’s really up to me to decide what’s best (that comes with the caveat that I do my due diligence, discuss with our medical team and research the crap out of whatever it is I’m thinking of doing – I can decide whats best based on an informed opinion. I’m not a maverick, hey). And after all my research on the blended diet and formula, its perhaps no surprise we’ve switched to the blended diet. 
This by far is one of the best decisions we ever made for our boy. Hurrah Blended Diets!

Jun 12
1

On making hospital appointments efficient as possible

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Hospital visits are stressful. Today we had an appointment with our epilepsy paediatrician that ended up being a two and a half hour visit. Not with the paediatrician (in fact, our appointment had been rescheduled without us knowing, so we were squeezed in between patients. We carved out half an hour of someone else’s appointment. We should have hand an hour with her – I’m frustrated!).

Needless to say, I went in armed with a list. I had the cheat sheet ready (mainly with a printed a4 sheet with a list of medications and dosages so we don’t need to waste time writing them out) and a list of things I wanted to cover.  We talked fast. About Mikaere’s seizures and med changes and vomits and dropping a weight percentile, about referrals to respiratory, Gastro and a developmental dentist. He had a rash on his face, and needs bloods for his metabolic consultant and a hip X-ray for his physio and a strength/needs assessment for his educational psychologist. She measured his head and listened to his chest and felt his liver.

We got a lot done, and as I wheeled Mikaere out (with the rain cover on to keep him from coughs and colds and germs of everyone else in the hospital) I had a new list of things to chase and follow up.

First a nappy change and a flush, and then to the paediatric bloods room. I liked this hematologist, his name was Rafal. He was experienced and didn’t have to prick Mikaere several times. He used a butterfly needle to collect blood in an adult tube (the red one; with no added mixes) and decanted into the smaller bottles. I like that, it meant it was quick, and less damage was done to my boys arm. Mikaere was a trooper, no tears, no drama. He even had a smile for Rafal. I appreciate that there was no screaming, and Rafal did everything he could to reduce the pain and reduce risk.

We paused in a side corridor so I could give meds and put then feed on, then to visit the CCN (community care nurse) to pick up some giving sets (that’s another fight we’re fighting, as nutricia have changed their giving sets again and the new alternative doesn’t work for us) and some catheters and to get a form signed.

And then onwards to X-ray, to look at Mikaere’s hips for hip subluxation. Mikaere was well behaved, and tolerated it like a pro. I laughed when he peed all over the table (I’d warned the radiologist he would). And then another flush, and home again to meet our hospice nurses.

But this is what it is for us now, I work hard to ensure our visits are super super efficient. That bloods and xrays work alongside other appointments (ideally on an off day so we’re not waiting alongside other clinics). It also means we’re not there all the time, keeping our hospital visits to a minimum is always a priority for us. Reducing risk of catching something from someone else.

It’s hard, and I power through the day. But this is what our day to day looks like. This is our ordinary at the minute. I hate it, hate it hate it hate it. But it’s what we do to keep our boy safe. So hey ho. Onwards we go .

Apr 23
0

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.

 

Nov 14
0

The Cheatsheet

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We have a cheatsheet for Mikaere. It goes everywhere we do, and is the first thing that’s handed over to nurses at A&E visits or admissions, doctors at appointments or any new therapist we have.

It’s literally a combination of every single question we’ve ever been asked, all the details people want to know, or didn’t know they should know. The nurses love it and the registrars love it too. Our consultants love it because it means we don’t have to go through the medical list and doses one by one. They can take the cheatsheet away, and we can use the appointment time more effectively.

It also means when someone asks something stupid, I know they haven’t taken the time to read the cheat sheet and I redirect them. It saves time. Theirs and mine and means I don’t have to fight to make myself understood, or worry that I’ve forgotten anything.

It’s also been helpful in other ways. The main being it signals that I’m a competent parent. That I know my child, I know his disorder, that I’m familiar with the medicalised setting and establishes that I’m an authority on my child.

It means that when it comes time to discuss an action plan, I’m included in the discussion as it’s taking place, not being told what’s going to happen after. It means when I disagree, I’m listened to, and my concerns are heeded. I can’t tell you how many times we’ve avoided being admitted because the cheatsheet gave me credibility when I’ve said no to admission.

The cheat sheet has just made our lives easier. For those that are interested, I’ve created a template here on google drive.

It’s the small things, hey? Cheatsheets. They make a difference.

Oct 29
1

On being in the A&E

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Mikaere’s had the once over by several people. His nurses have taken bloods, he’s had a nebuliser and is on o2. His gas and air look good (his lactates especially), his temp is holding steady and we had a visit from a PICU Nurse we know who came in to say hey.

So no red giant flags, and I have a chance between consultants to go get breakfast.

And as I’m walking down the familiar halls to M&S I think Saturdays are the best days to be here. There are less people in the hospital today. We had the bonus of coming in early, just after the shift change but before all the other kids had enough time to hurt themselves and fill up the a&e waiting room.

Is it weird that I think all this? That I know the time shift change happens? That I know when the lulls and peaks of our a&e are? That I come armed with a cheat sheet that answers 99% of the nurses/drs questions, and the two questions I’m asked (what is blood test for glycine on the system as – amino acid blood profile – and what colour is the bottle – green) – I can answer without really thinking about.

Our last a&e visit was months ago. MONTHS ago. I guess this is the winter season kicking off, right after a week of appointments and therapies after the summer break. I’m not happy we’re here, but now that we are I’m not panicking about it, too much. I’m hopefully we’ll make it home this afternoon sometime.

—-

A few hours later and I’m worried. We’re still in the A&E majors, Mikaere’s still on o2 and sleeping, but he’s not holding his o2 levels above 92%. We need 94% or higher. We up the rate to 1L. That’s the borderline dose. It’s not a super high dose of o2… but any higher and we’re staying over.

The nurse notes say they’ve booked a bed upstairs on the ward (just in case) and I’m positive that if this was any other kid, or if I hadn’t expressed my concerns about the risks of being on the ward we’d be up there already for observation rather than down here. But down here is safer. Down here the A&E majors is filled with broken bones and a girl with ENT drama. There are no other chest infections or mystery illnesses in our room. The ward I know is probably filled with more things that pose a risk.

So we wait, we see. The idea is that the longer on o2 he is the easier it’ll be for him. His body won’t have to work so hard, he’ll have more in the tank for recovery. Or so we hope.

I’m worried though. I don’t want to go up to the ward. That’s the start of the path towards deterioration and I’m scared that each escalation will mean a step toward terminal.

But we’re not there yet. We’re not. We’re just in A&E still, just in observation. We’ll see.

—-

The bloods are back. The chest xray clear. But Dr Erin has a game plan. She called our apartment a mini hospital. We have suction, a stat monitor and oxygen. We have all the medical equipment that Mikaere’s currently making use of on A&E.

I think that’s our saving grace. Kai’s just barely managing to keep his stats up with o2, and we’re able to wean to 0.5L when he’s awake. It’s a small wean, but it’s enough. We’re  discharged with very strict instructions of what to look for and when to come back. We have nurses calling to check in, and with a discharge note we’re waved off.

Mikaere’s not any better than he was this morning, but he’s not any worse. I was right to put him on o2 it turns out + I’m grateful for the reassurance.

Kai’s ill. He’s not holding his o2 levels up by himself. But we’re home. Thank fuck for that.

Oct 26
0

On the first hospital visit of the season

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And just like that our little man is back on oxygen, working overtime to keep his o2 levels up (and failing). It’s the first stupid cold of the season. We had a nurse overnight and when I walked in this morning she was just getting ready to wake us – Mikaere’s o2 level was sitting at 89%. Typically it’s at 99% – 100%. 89% is LOW. Lower than I’d like, lower than anyone would like. And you could see it. My baby was struggling to breathe. His breath was fast and shallow, he had a tug and an intercostal pull. He was working overtime to breathe.

We have tanks of o2 sitting in the spare room for moments like this, and I pulled one out, grabbed an o2 mask. It’s been forever since he’s needed o2, and you can tell, because the mask is too tight on his face. He’s outgrown the paediatric baby o2 masks. Regardless, it does the job. I watch with relief as his o2 climbs back up to more normal levels, settling at 96%. In the safe zone. He relaxes a little, he doesn’t have to work as hard. Poor baby has a temperature, and we give him Calpol.

I take pause. Get dressed, say goodbye to our night nurse. Sam and I discuss whether we should go into hospital. He makes coffee and I think about calling our community nurse. His levels are fine on o2, but he hasn’t need o2 in I don’t know how long. He’s clearly got a cold of some kind. If it’s a cold, we probably could manage it just fine at home. We have o2, we have stat monitors and suction machines. He sounds a little rattly, but I’m pretty sure it’s all upper airway.

If I call our community nurse looking for reassurance, she’ll ask us to go into hospital. Go into hospital. Complex needs. Difficult case. Better safe than sorry. Go into hospital. They always tell us to go into hospital ‘just to be safe’. Everyone is scared of taking the chance to say does he really need to go right now? What are the risks? Benefits? It’s all go into hospital, and go now. The risks of being wrong is too high.

But the hospital isn’t safe for us. Mikaere could very well catch something else from the hospital. Something worse. Plus, it’s loud and tiring and disrupts our routine, and I’d really like NOT to spend our Saturday in the A&E.

In saying that… he hasn’t needed o2 in forever.

I make the call anyway, knowing she’ll send us in and alert the paeds registrar for us. Also, on a Saturday morning at 8am, none of the other kids have had a chance to hurt themselves yet. Their parents will just be waking up and they’ll take longer to decide to take their sick kids into the A&E. If we left in the next 15 minutes, we’d make it in just after the shift change when the paediatric A&E is quiet. I mean, if you’re going to go in, might as well time it for non-peak time, right?

Sure enough, our community nurse said to go in.  So off we go. We’re on our way into hospital. 🙁

Oct 19
2

On the hip X-ray

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Kids with low tone are susceptible to scoliosis (this is where there ends up being a sideways curve in your spine), hip subluxation (otherwise known as a partial dislocation) or hip dysplasia (where the socket doesn’t fully cover the joint) – it’s not awesome.  Apparently all three are painful (womp) and scoliosis can cause all sorts of eating problems (with your insides being stretched/squished by your spine).

There is a not a lot of prevention that can be done in kids with low tone… all the of the early intervention strategies are movement, exercise and positioning. But with kids that are like ours… what do we do? The NHS promotes positioning with things like sleep systems and regular (read: constant) repositioning throughout the day but really – that doesn’t prevent much. Exercise and strengthening the muscles that support the spine is whats needed, but that’s not helpful

Mikaere has low tone. He’s at risk of scoliosis and hip subluxation/dysplasia as a result. And you can see it, in the way he holds himself, how he struggles to stack his body the way that we do naturally – just how easy it would be for things just to misalign.

We spend all day everyday repositioning. It’s in how we hold him and how we move him and how we put him down, feed him and play with him. (There was a point in our first few days at hoe where I felt we were literally being taught how to be with our boy.  Every single moment with him is an physio/ot/development moment where we teach his body and reposition his body with an eye to prevention. Holding his wrists, repositioning his knees, encouraging him to turn his head one way over the other, it’s never ending).

Positioning is one of the many things we think about constantly. Because that’s what’s there is for scoliosis prevention – repositioning and supportive seating. That’s to say, it’s the only treatment until you get to full body torso braces and surgery.

So we reposition. We stuff supportive pillows and tubes and straps down the backs of chairs and his carseat and line them along side his cribs.  And every six months to a year he gets a spine/hip X-ray. So we go (if I’m clever I’ve paired the appointments with something else in the hospital). We X-ray. And we wait for results.

Our Physio knows it’s coming but we’re not ‘bad’ enough yet for a referral to orthotics.

This time there was no news. His hips don’t show any signs of sublaxation (hurrah) and his spine is still under the threshold for scoliosis treatment. Phew. We know that we’ll eventually be referred to orthotics, but we haven’t reached the ‘its bad enough for orthotics’ point yet. So we wait. We reposition. We put Mikaere in the stander. We hope.

So hey ho. Onwards we go.

Oct 03
0

On the helmet

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Oh the helmet. What a mission that was – trying to keep Mikaere cool in the helmet was such an ongoing effort. We’d pull it off at the first sign of sweat (because we know an increased temp causes an increase in seizures). We’d spend forever positioning fans and taking off or putting on clothes as he got too cool or too hot. And every time I’d tell myself it’s worth it. The helmet is worth it.

You wouldn’t know it for looking at him, though. He still has a flat spot, and a bit of a ridge. But you guys – my eyes aren’t very good a telling apart a shape with millimetres difference from week to week, but numbers don’t lie. Every few weeks we’d go back and while Kaikai’s head was still growing, there was be a millimetre or two difference. Like I said in that initial post it’s going in the right direction.

Going in the right direction for us is huge. It’s HUGE.

And it’s huge because before Mikaere wasn’t able to turn his head past the ridge he had. But now? Now he can. Now the ridge has been reduced slightly, enough that he doesn’t need as much effort to turn his head. Do you know what this means? It means his muscles were building up evenly on both sides of his neck. It means he figured out he *could* turn the other way, and did, frequently. It meant that he was no longer restricted!

How huge was that?

Even better is this week Mikaere’s fontelle closed. With the closed fontelle the helmet couldn’t do it’s job anymore and we were done. DONE! We went for the final scan and after that – NO MORE HELMET! I’m delighted. No more stinky helmet hair or worrying about an increased temp or sweat or sterilised wipes for cleaning it down. Don’t get me wrong, the helmet was absolutely the right choice for us. For sure. I’m glad we did it. So so glad.

Even better when we got the final report back, the results were staggering. The Cranial Vault Asymmetry measures the left and right diagonals (meaning, front left to back right, and front right to back left) 30 degrees from the centre point. They take the two measurements, and minus one from the other. That difference is the Cranial Vault Asymmetry.

When we went in, the difference was 24mm. When we left, the difference was 14mm. 14mm!!! That’s huge, and there is so clearly an improvement.

I’m still annoyed the NHS told us it was cosmetic only and they don’t treat it – that was not true for us, the cosmetic only part. I wish I’d gotten a second outside-the-NHS opinion earlier. It could have been solved much earlier and maybe Mikaere would have made gains earlier… but if I’m wishing things, I’d also like to wish for a cure for NKH.

Hey ho. We got it in time, we had a good seven month run of helmeting. And now Mikaere has a slightly more rounded head with a smaller ridge that he can turn.

The helmet was excellent for us, I’m glad we did it. But also – high five!! Helmet treatment finished!!

Sep 24
1

On vision

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In the last few months Mikare’s vision has become more… pronounced? He’s able to see more, he’s LOOKING at more. Before he was quite… disengaged? Is that the word? It was as if he was using his ears to ‘see’ rather than eyes. It was hard to tell what he’d react to, because he doesn’t stare really. It’s hard to tell if he’s focusing or not. His head is constantly moving, so there’s no prolonged looking in one direction. But small things would give it away, like Mikaere wasn’t really able to see you unless you were right next to him.

We did lots to help his vision – namely large black and white cards were up everywhere – in his crib, by his changing matt, in the buggy. I’d put “CVI” into the search box on youtube on an iPad and put it in his crib (I liked this one best). We’d hang black and white toys from a microphone stand to dangle above his head. We move objects with lights or bright colours slowly into his field of vision and across to the other side in the hope he’ll track. We even got referred to the local Vision Support team, who started working with Mikaere every two weeks.

I can’t say for sure any of that helped – for a long time it felt like we were doing the same things over and over with little to no progress. The problem is that we didn’t know what Mikaere could and couldn’t see. We knew from the eye test that there is nothing wrong with his eyes. We knew Mikaere could see some things, but what? We don’t know. If we don’t have a baseline, how do we know it’s improving? Do we keep going? Do we stop? Does it make any difference at all?

And then we had a period with little to no seizures, no illness and something shifted slightly. It wasn’t a sudden change, it was gradual thing, like noticing Mikaere turn his head if someone moved down the other end of the room. He might point his head at an object, turn away and then batt at the exact right position with his hand.

Our therapists (who had the benefit of distance) started commenting how much aware he seemed. He began doing things like opening his mouth in anticipation of food, or turning his head when he didn’t want to eat what we were offering. Turning his head much more. He’d cry and stop when we approached him. Small things.

We’re still not clear what he can see, and Mikaere doesn’t stare, or track the same way we do. He won’t look and reach at an object at the same time, but there is some visual mapping happening.

We still don’t know what he can or can’t see, but there’s a definite improvement, and that’s something.