Tag

therapy

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.

 

Apr 01
0

On Portage and Shaving foam

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We’re on the portage service, which is basically play therapy. Our lovely therapist Jackie comes to visit and brings a bag very much like Mary Poppins carpet bag of amazing. There are always interesting wonders in her bag.

A few weeks ago she bought by shaving foam. We’d been struggling to keep Mikaere entertained. While I’m struggling, anything that requires spontaneity or effort is tricky. Well, enter Jackie and her magic shaving foam, and Kai went to TOWN.

I wouldn’t have thought about shaving foam before. I’m not adverse to messy play, but it’s hard to get out of your bubble and find things that would work for Mikaere that he’d enjoy. Shaving foam was definitely a treat and it went EVERYWHERE. It was hilarious, and amazing and we all had a great time.

Thank goodness for play therapists, hey?

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 17
0

On standing

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We’ve started a new exercise at our Monday Morning playgroup – standing. I don’t mean the standing that happens in the stander but proper standing, on his legs – not strapped in. It takes two people to support him and he’s always leaning against something (because head and core and legs is too much to think in one go) but you GUYS!

His feet are on the floor! His legs are straight (either with the help of us or gaiters) and he’s upright!! I’m glad this is a thing we’re working on. It feels like a step forwards. Its delightful to see how tall (!) Mikaere is, and it’s not hard to take that leap of imagination and think on what things could have been like if (there’s always that if and it’s a dangerous path to spend too much time on, but I let myself daydream for a moment or two).

I don’t know if we’ll ever get to unsupported standing, Mikaere needs a lot of encouragement (read: hands on his knees or leg gaiters and lots of cheering and big fusses) to straighten his legs. We currently have a floor baby – that’s his happy place, lying down on the floor. Where he can kick and wriggle and have some movement – the floor is where he does it. We always set up a safe space for him to wriggle, lugging about mats and baby blankets for him to lie on.

The idea that the world might be more accessible to an upright Mikaere, that standing is one of the (many) requirements of walking… standing is one of those gateway milestones for the hopes of a special needs Mama, obviously.

He’s not standing unsupported by any way, shape or form, but for a five minutes on a Monday morning Mikaere stands outside his standing frame. He’s standing, weight moving through his hips and legs and little wriggly feet. I’ll take it, absolutely.

Oct 08
0

On the improved head holding

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I remember way back in September 2017 I was sitting in a group of ladies (a mix of therapists and special needs mums) expressing my fear that Mikaere would never hold up his head. I’d been primed by our doctors not to expect him to head hold (smiling – one of those milestones a neurotypical kid hits at a few weeks was to be where his development stopped. That’s what we were primed for).

I held onto this fear for the longest time, right up until Kai, learning against Sams chest was able to hold his head upright without it falling to the side. And then, with support, he was able to control his head to look to the left and then back to the right, and then, AND THEN he tipped himself forward slightly and held up his own head (!!!!) – it meant his brain was making connections! His brain was learning how to balance his head and coordinate that with direction!!

At first it was only mere seconds that he was able to hold his head up without support. He was wobbly af, but those tiny two seconds, three seconds were everything. I posted way back when about those initial moments. Since then, with much work and support and physio (hours and hours and hours of it) Mikaere has come on in leaps and bounds.

With some convincing, he can hold his head up almost a whole minute and a half. This is game changing. It means when we pick him up, we don’t need to cradle his head like a newborn (which is convenient, because he’s no longer newborn size or weight, and picking him up requires two hands and the muscles to cradle 10kgs of baby).

It means, for a minute, I can hold him with one arm while I grab something. It means he can sit with us, and we don’t need to not worry about his head, It means when we’re doing physio, I have an extra hand to support his core or encourage using his arms. It means moving on from the newborn holds. Mostly it’s just been one of those skills that has come on that has changed the way we interact with him and we’re over the moon.

I wish I could have gone back to last year and told myself, with all the fear, to be calm. That Mikaere would hold up his head. It’s not neurotypical by any stretch, but my days it’s an awful lot more than we thought would happen.

To clarify, because I know without a doubt there will be some NKH parents reading this, who may feel that horrid sinking feeling because their babe doesn’t yet do the same (I am super familiar with that sinking feeling, for sure. It’s awful. That mix of happy and jealous but not jealous and sad with an unhealthy dose of grief… the special needs life is rubbish) – this head holding business – it’s not all the time, it’s not a reliable head hold and Mikaere is still very very wobbly. We’re not even close to the world of the neurotypical head hold.

Still, all clarifications aside, we’re pleased as punch with this little development. We see you little guy, we see you and love you and are so proud!

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.

Aug 20
3

On rolling

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We’ve hit another milestone – Mikaere rolled over today. From his back onto his left side.

Mikaere ROLLED OVER! Onto HIS SIDE! BY HIMSELF!

I can’t even begin to explain our excitement. The first time I saw it I thought it was a fluke. He’s been very wriggly recently – a little tiny worm as he wriggles about the mat, but always on his back, with shuffling his hips from side to side to get around.

This is the first time we’ve seen him roll. Intentionally. With something we haven’t explicitly spent hours and hours teaching him. My baby can roll!!

It’s the small things, hey?

Aug 03
0

On more vomits and our magic osteos

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After my victorious post about Mikaere putting on weight… I’ve had to retract all that joy and positive forward momentum. As of this morning, Mikaere is 10.37kg. Which is to say, he’s the same weight he was three months ago. Except that now he’s longer, and he’s lost all of his beautiful baby chubb. You wouldn’t know it to look at him – he looks so well. Like a happy little boy. Except that most people don’t see him without his clothes on. You can’t see his ribcage or the way his little vertebrae stick out.  Now, just to clarify, he is underweight, but he’s not in emergency, dire situations. We’re sitting at about the 20th percentile.

Even more relevant, is that we know *why* he’s not putting on weight, and it’s because he can’t keep food down. Oh the vomiting. The vooooommmiting. It’s everywhere, all the time.

Here’s the thing. Mikaere has a not-cold. He’s not really ill, he doesn’t have a chest cold or a temperature or a touch. What he has are secretions. From teething, maybe? From life? And every time he can’t handle a secretion he vomits. His body and his stomach is so sensitive. I spent a long time talking to our osteo about the structure of the stomach.

I’ve said it before and I’ll say it again – here is research that says a lesser curvature gastrostomy reduces the incidence of postoperative gastroesophageal reflux (aka, vomiting because of the gastro – source) so for everyone due to get a gastro – you’ve been warned. Asked for a hitch with a low curvature and make your surgeon agree.

I’m positive that because Mikaere’s stomach has been hitched high to his abdominal wall, this has pulled his stomach up at an unnatural angle, changing the way food sits in his belly and puts pressure on the lower esophageal sphincter, which is that the nice bit at the bottom of your esophagus that keeps your food in. The outcome of this is that he’s a trigger-happy projectile vomiter now. All the time, everywhere. In the buggy, the car seat, the crib. Sitting up, or down or side lying. Moving, not moving. On the blended diet, formula or dioralyte.

I thought we were getting somewhere with reducing the frequency of his feeds and the rate at which we feed him, but now we’re going even slower, because fuck. The vomiting. I thought we were on the up but I was wrong. Womp.

Anyway, like I said, we see an Osteopath every week thanks to the amazing charity Osteopathic Centre For Children. Side note: Osteo is essentially concerned with the mechanical arrangements/movements in the body, particularly in terms of alignment. They do a lot of soft tissues massage and joint manipulation, though to be honest, sometimes it literally just looks like they lay their hands on Mikaere and close their eyes. We see the same therapist every week and every visit in the few weeks has included a projectile vomit. It’s so so horrid.

But this week, this week Stuart was in the clinic. He’s the director of the Foundation for Paediatric Osteopathy and is essentially one of UKs leading osteopaths. Stuart is essentially magic. He came to see Mikaere and we talked about the vomiting. Leading an additional two osteos, they did their hand laying/eyes closed trick and talked about medical terms (the sacrum, the vagus nerve etc. They later translated to say Mikaere’s insides were a bit twisted around the hitch, which caused his body to work a bit like a spring. They were trying to untwist all the things).

I’m hopeful, as always. I wasn’t convinced they were going to stop the vomiting, but Mikaere enjoys osteo, he always relaxes and they’re not doing any harm.

Oh, silly disbeliever me. After his appointment, we went FOUR DAYS without a vomit.  Considering we had normalised at to 2-3 vomits a day, four days of not changing sheets or cleaning carpets or multiple baths – what a relief. You can be sure I showed up the next week with a ‘more please’.

After every visit, we’re seeing longer and longer vomit free times. I don’t fully understand it, but I’m grateful. Mikaere is not yet back up to where he was, weight wise, but if he can keep food down it’ll start, right?

Magic Osteo’s. Definitely recommend.

Aug 01
1

On small wins

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Mikaere’s on two antiepileptics and a supplement to help with his seizures: Zonisamide, Phenobarbital and Omega 3 (with all of it’s fantastic DHA seizure support capabilities). Now, it turns out that phenobarbital is one of the most frequent drugs used to treat neonatal seizures, and considering Mikaere is palliative it seemed like a good choice when nothing else was working.
 
But here’s the thing, long-term use of Phenobarbital has enough studies to suggest it has a terrible effect on a developing nervous system, it has a detrimental developmental effect too (with developmental quotient declines (in both cognitive and motor skill) which are thought to reflect a slowed neurological growth rate) and causes an increase in the probability of a cerebral palsy outcome.
 
Whats more, side effects include a decreased level on consciousness (it’s essentially a sedative) and it’s addictive, causing withdrawal symptoms when weaning. Aaaaand it would make Mikaere vomit. If it wasn’t diluted and given really really slowly he would vomit immediately.
 
Also, it turns out phenobarbital is used in the lethal injection of death row inmates and also prescribed to terminally ill patients to allow them to end their life through physician-assisted suicide. Always nice to know we’ve been giving this drug to our baby twice a day for last 14 months.
 
A good 9 months ago now Mikaere’s seizures started becoming a bit more, dare I say it, under control? Mikaere started having a handful of seizure free days. At first, it was sporadic, one day here, one day there. It was amazing, so amazing to see. The fewer seizures he had, the more gains he was making. Eventually, he worked himself up to two or three day stretches. I was ecstatic, to say the least.
 
It was at this point we discussed weaning with our palliative care team. There wasn’t much harm, they said. As long as we went slowly. If there was an increase in seizures we could put the dose up, no problem. So we started a very very slow wean. Every three or four weeks, we’d reduce the dose by 2mg (which is about 0.2ml – a tiny tiny amount). We’d wait, and watch. We already track Mikaere’s seizures and I’d hold my breath waiting to see if there would be more seizures. Sometimes there would be if he had a cold or was having a tough time. Sometimes you wouldn’t have noticed the dose had dropped.
 
It felt tricky, weaning. We eventually got to a sub-therapeutic dose. We high fived that day. And today? Today, after months and months and months of tiny, incremental weans – we’ve managed to get Mikaere off phenobarbital.
 
It’s been amazing. He’s been more awake and aware, making more developmental gains. I have seen an increase in seizures if the Omega 3 is a bit old (and has oxidised) or his Zonisamide dose is later than it should be, but generally, as long as we’re on the ball he’s a happy little guy who is still having some seizure days.
 
I’m stoked to have Mikaere off one of the medications. Phenobarbital is still on our list of emergency meds, but I’m delighted we’re no longer giving it on a twice-daily basis.
 
Celebrating small wins, woohoo!