Puberty has landed

Uuugh. Just when we thought we knew what the Dude’s pattern of seizures looked like, puberty has joined the party, turned all the tables over and thrown everything fragile out of the window.

It has been a relatively stable few years, seizure wise, for our boy. While we are (painfully) aware that we will never be able to stop the seizures fully, for the past 3 years or so a combination of medication and his VNS, together with dietary tweaks have kept him on a fairly even keel; since his spinal surgery last year however those pesky hormones are wreaking utter havoc.

Whether a combination of pain, hormones, teeth cutting through the gum (an issue for kiddos who aren’t orally fed being a delay in adult teeth coming in), the end result is seizure chaos. While it’s causing us to keep a closer eye on things, at school the repercussions are enormous.

Any epilepsy parent will tell you, probably through gritted teeth while grimacing, that care plans are something of a nightmare. Some are simple – giving paracetamol for pain for instance – while others are nothing short of the Devil’s own paperwork. Seizure care plans for a young man with multiple seizure types that present in ways staff haven’t seen before? You get the idea.

Recently, things have come to a head.

Surgery has meant he has better mobility of his head and limbs. Better mobility means he is moving about more. Moving about more has meant a lot of movements being misidentified as seizure-related. The care plans that were fine pre-puberty/pre-surgery and not fine any longer and need amending.

Like everything else in the world of SEN however, this is not a simple job. Due to safety concerns, the poor boy cannot attend school until the seizure care plan is amended; this will prevent him receiving too much rescue medication due to the care plan not being accurate, but also means he is missing his friends.

In order to change it, we need to liase with his epilepsy nurse. And the school nurse. AND his neurologist. There is not enough hair dye IN EUROPE to cover the amount of white hairs I am developing.

We always knew puberty could be a tricky time for our boy; friends who have already navigated this stage of life with their young people have filled us in. But nothing prepares you for how quickly things can change.

I am definitely not ready for my baby to be a teenager, but I’m even less ready to ride the storm that is potentially coming. On a lighter note, it would appear his voice stating to break making him sound like a honking goose is one of the funniest things the Dude has ever heard…

A letter to the new Mum on the ward

I saw you earlier as I passed the cubicle on the way to grab a coffee. I know this is probably one of your first times here, you haven’t yet had the chance to build the armour those of us who’ve walked this path for longer wear, the way when you smile you think you hope to hide the fear in your eyes, as if convincing yourself that it will all somehow be ok.

You don’t know me, but I recognise myself in you. You may have just heard your childs diagnosis for the first time.

You may have just been left reeling, or even relieved that it wasn’t all in your head, or that someone listened. I recognise the pale face and dark circles that speak of nights spent watching over your child, the strongest and most ferocious protector any child could ever ask for.

I see you.

12 years ago, I was you. My world had shattered and we were scrambling for a new ‘normal’ in the chaos of a life-changing diagnosis. The years have changed me for the better.

I’ve learnt that you are allowed to grieve for the life you dreamt about. It is ok to grieve for a child that is alive, to grieve what they have lost too.

But believe me, the love you have for your child will carry you both when you don’t think you can keep going. And the life we have now is better than we could ever dared imagine.

You are going to find strength you didn’t know you had. Even if you are naturally quiet and shy you will find your voice. You will learn resilience. You will see the beauty and the joy in the simplest of things.

Your child will be the greatest source of pride and joy you could ever imagine and you will absolutely develop a sense of humour that may be shocking to some but that will keep you laughing through the most difficult times.

And you will find your Tribe.

You will find friends here that will stay by your side through whatever is to come. The parents you will meet and forge lifelong bonds with.

The nursing and medical staff who together with you will become a formidable team.  You may never get answers to the questions you have now, the why’s, and the what if’s will always be there but they won’t always be so close to the surface.

It may not feel like it now, but you have been given the greatest gift imaginable. These incredible children are miracles. They are our greatest teachers and although I know you really wish you weren’t here right now, it really will be ok.

Wanted: Personal Assistant

Dear reader, I am comprehensively exhausted. I would dearly love to say that this is because Mr V and I have a fabulous social life, or that as a tweenager the Dude is constantly off out at various social events of his own. Frustratingly, my current state of creaking tiredness is a result of feeling like I am spending an increasingly large amount of time arranging meetings, chasing up training and doing tasks that other professionals should be doing.

I know a lot of this is due to the cuts made to various services over the years; too few staff trying to do too much work is always going to end up leading to problems. After the Dude’s spinal surgery back in October he developed a slight issue with the surgical incision where it simply didn’t heal at the base of the wound. This left him with a 1 inch hole in his back which was a massive infection risk, and needed daily dressing changes. In 2023 our community nursing service was decimated, meaning many of the services that they used to provide and which families like ours relied upon are no longer available. We were lucky if we could get a nurse to come out once a week – so the task fell to us to manage this genuinely terrifying wound in our child’s spine.

We were lucky if we could get a nurse to come out once a week – so the task fell to us to manage this genuinely terrifying wound in our child’s spine.

And then there are the training requirements for carers – the number of forms that need to be filled in and boxes that need to be ticked is truly eye opening! In my adorable offspring’s case, this means that training needs to be provided for his PEG feeding tube, feeding his blended diet down said tube, his seizure management, manual handling, secretion management, VNS use and the list goes on. It would be far too simple if there was a single point of contact for all this, instead each item of training needs to be dealt with by a different professional (in several cases in totally different hospitals). While we have been dealing with all this for years, as we are not healthcare professionals, we are not able to do the training for the carers ourselves despite being the experts in our child’s care.

Parent carers are an impressive bunch, we learn how best to support our children whether that’s by managing medical needs, performing nursing tasks, tube changes, tissue viability issues and the associated admin all while managing family life. It’s a juggling act we don’t always get right, and the occasional spinning plate hits the floor. This month, most of the tasks have gone well… I’m going to take that as a win, pour a glass of wine, and wait for whatever April brings.

February 14th

When someone asks what I’m doing or did for Valentine’s day I smile politely and say something along the lines of ‘quiet night in with Him Indoors’. Mr V and I have attempted to go out for Valentine’s day once since the Dude arrived on the scene. Let’s just say it was not an experience we wished to repeat involving a minor car accident, us standing the rain for many hours waiting on the recovery truck and both of us agreeing to stay at home next time!

Valentine’s day for us has a much greater significance than flowers and a disastrous attempt at date night however. Did you know St. Valentine is the patron saint for epilepsy? In this house that fact alone makes it worthy of note, but it is also the anniversary of the Dudes life-changing VNS surgery. In this house, Valentines day is a celebration of how far our amazing boy has come thanks to that incredible little implant.

It’s quite hard to believe that is was 7 years ago that the photo above was taken.

The VNS doesn’t stop the Dude’s seizures entirely but have given him precious respite from their constant assault on his brain and body. When people ask how many seizures he has they are genuinely horrified to hear he has around 6-10 every day; the VNS stops an average of 60 seizures DAILY from developing. Can you imagine the impact that level of seizure activity has on a developing brain? By reducing this, his VNS has allowed him to develop cognitively, to improve his communication skills and to have a vastly improved quality of life.

We are acutely aware that our boy is one of the lucky ones as the VNS doesn’t work for everyone. It’s classed as a palliative measure, not curative, so although it has been reported to stop seizures completely in some cases this is the exception. When my boy went down to surgery that day I can remember praying for it to at least help him a little bit, because it just HAD to. 7 years on, while we still feel it should have at least a small LED visible at the skin surface (the Dude thinks a more Iron Man style chest piece would be appropriate) so we know we have actually activated the implant with the magnet, it is still an awesome piece of kit. So, on February 14th we will indeed be having a quiet night in, all three of us, to take time to enjoy just being a family. Happy Valentine’s day everyone.

Another trip round the sun

January. Damp, grey, about 9547 days long… and my birthday month. After the excitement of Christmas, I actually don’t mind the slow pace of the first month of the year plus I’m more than a little thankful to have reached the grand age of 45 more or less in one piece! 2023 was one of our most difficult years to date – our amazing boy had to deal with significant worsening in his health, and the majority of the year was then a battle to keep him well enough for the spinal surgery he so urgently needed.

The last three months of the year flew by once he was safely through that, so to be able to celebrate another complete circuit around the sun with the men in my life meant a whole lot. The New Year always brings mixed emotions; hope for the coming year, sadness for the friends who we lost in 2023, and a potent mix of joy and fear that only families of medical fragile children can understand.

While we are overjoyed that our children are still here and fighting, there is a terrible fear that comes from knowing Winter is still not over and that it could be any one of us grieving.

For us, 2024 is the first year in a decade where we don’t have the spectre of major surgery hanging over our boy. It’s the year the Dude becomes a teenager – may God have mercy on us all – and the year when, with a bit of luck, things will be a lot more stable for him health-wise. The irony that this is just in time for puberty to hit and throw everything into chaos is not lost on me. Last week we had a neurology review with him and realised that with how unwell he’s been he hasn’t actually had his anti-convulsant medications reviewed since 2020!

Unsurprisingly, the dose he is currently taking is woefully inadequate; and thus the boy is beginning his year with a series of dose adjustments to bring his medications up to where they should be. He is less that pleased about this, however the hope is that this will give him much better seizure control again.

From my family to yours, happy new year – here’s hoping 2024 is a kind one, for all of us.

What’s in a name?

Having a medically complex kiddo generally means that you need to stock the equivalent of a small pharmacy in your kitchen. One of the delightful quirks of anti-convulsants is that different patients respond to different brands; the active ingredient may be exactly the same, but there will be some difference in the formulation that means that they HAVE to have a specific brand of that medication.

In general, this is fine. But sometimes, it can cause headaches. Literally. The Dude is no exception. Of the medications he takes, there are two which absolutely must be specifics brands. As this is specified on his medical notes, the pharmacy are able to order the correct brands despite the significant difference in cost this incurs. This has been the happy situation for YEARS.

And then out of the blue, we learnt that one of the brands was changing its name. To a ‘branded generic’. Oh dear.

In case you are blissfully unaware of generics vs branded (oh how I envy you), allow me to briefly explain. The ‘generic’ drug is the active drug without any bells and whistles. A good example is Nurofen compared to ibuprofen. They are both the same active drug, but the branded Nurofen is usually more expensive than standard generic ibuprofen tablets. The same goes for other medications, such as anti-convulsants. In general, the generic versions are (a lot) cheaper, and so prescribers will usually put down a generic version instead of the brand unless there is a good reason why the branded version is essential.

Despite the name change, as the formulation hasn’t changed, the Dude still has to have this particular drug. But now it doesn’t have a specific brand name, which makes ensuring that correct one is ordered a whole lot more complicated. It would not be an understatement to say that my words on hearing about this situation were not repeatable!

There are times when I wonder if the Powers That Be genuinely do these things purely to push already stressed parents to the brink of sanity… safe to say, the Dude’s GP shares my thoughts. As things stand, all we can do is order the generic version of the drug and have the prescriber ensure that they write on the prescription that it has to be the generic made by the specified manufacturer. We can only guess at the manufacturers’ reasons for this change, but we do know that it will cause considerable issues for us and the prescribers for many months to come.

The Monster We Live With (Epilepsy)

November, in case you somehow missed it, was epilepsy awareness month. Our journey with epilepsy began on a hot August morning in 2011; until that day the thought that my child might experience a seizure had never crossed my mind.

Over the years, we’ve learnt how cruel this monster really is. My beautiful baby boy, once so smiley and with a laugh that absolutely melted my heart, has had to fight every day of his life. It isn’t just the outward seizures you see, it’s the impact of near-continuous epileptic activity in his brain playing havoc with his development.

It’s seeing him fall asleep during the day from sheer exhaustion, because the monster doesn’t stop just because its night time. It’s seeing the frustration in his gentle face as he struggles to control his limbs, only for another random muscle spasm to cause his arm or leg to suddenly jerk. And it’s holding my baby, long after he’s outgrown the baby stage, gently stroking his hair and whispering that it’s ok, that he’s safe, that we’re with him, as yet another seizure rips through his body.

Epilepsy is incredibly cruel.

However, it is because of this awful disorder that we’ve met some of the most amazing people in our lives. We have an amazing community of friends. Our boy has people routing for him from all corners of the globe. He is, quite simply, our hero. He refuses to give up.

Once the seizures have passed on for the time being he simply gets back to whatever it was he was doing, be that boardgames, LEGO, or watching TV. His smiles are all the more precious because of how much epilepsy has stolen from him. I would be lying if I didn’t say that epilepsy has stolen far too much, and I’d give my last breath if it meant my son could be cured of this disorder; but much as I wish it were me and not him it isn’t possible.

There are still so many misconceptions about seizures and epilepsy in general; no, it is not contagious. He cannot control when the seizures happen. Despite his physical limitations, my son’s mind is as sharp as flint. Having seizures does not mean he is not intelligent, or that he doesn’t want to do things. We just have to be more creative and work harder to make things possible. He’s an appalling flirt. And he is our everything.

If you don’t know seizure first aid, please go and learn it. It’s very simple but it could save someone’s life; it doesn’t matter if you don’t know anyone with epilepsy. At the very start of my son’s life, we didn’t either.

You are here

It’s no secret that waiting on a surgery date can be stressful. Dates are booked weeks to months in advance only to be cancelled at the last minute due to lack of beds, illness etc. Often repeatedly. It’s frustrating, distressing and enormously difficult at the best of times – add in the extras that come with a complex need child and things can really get complicated.

Four weeks ago we got the call that the Dudes spinal surgery was booked in. An already high-risk procedure, this surgery was even more difficult to arrange due to his VNS. Specialist equipment had to be brought in, two surgeons were required and a VNS specialist had to be present to turn his implant off immediately prior to the surgery and then switch it back on again immediately after.

Organising this surgery has been a logistical nightmare. Two weeks ago he was admitted for intensive physiotherapy and IV antibiotics, extended microbiological screening, and a host of pre-op checks to optimise his lung health and get him as ready as possible for the long operation to come.

Waiting for each test result had us holding our breath.

A week in, he caught a virus in hospital; queue daily blood tests to monitor his infection markers. Three days before surgery another test result threw everything into doubt; a weekend of frantic activity ensued with nurses trying to contact surgeons, surgeons contacting microbiologists, and us barely sleeping. With 24 hours to go, we didn’t know if surgery would go ahead, only that surgery would likely carry even higher risks than we’d initially thought.

Unless you’ve lived through something like this, it’s impossible to understand the level of anxiety and strain parents and carers of fragile or complex children experience in these situations. Communication is crucial but is often lacking – not for any reason other than often there are no answers to give. Preparation for this surgery have been 18 months in the making; battling to keep him well enough, to protect his lungs from infection to reduce the risk of further damage while trying to minimise antibiotic use to minimise the risk of resistant infections. We often feel totally lost, the weight of the decisions we have to make for our children weighing heavily on our minds.

At 7am on 24th October we had confirmation that a PICU bed was available; until that point I don’t think any of us quite believed it would go ahead. In just 8 hours, the surgery that we’d waited so long for was completed and our boy was safely back in PICU. Now to start the recovery journey, but that’s for another day.

Being Kinder

Recently I have experienced a period of ‘burnout’, both on a personal and professional level. Attempting to juggle a fulltime career with the needs of a SN child, the worries caused by the cost of living crisis and the ever growing anxiety over my childs health meant that I simply could do no more.

Taking the time necessary to fully recharge and recover sadly isn’t an option – we can’t just hand our son over to someone else, leave work and take a full break for several weeks. However, taking a step back and just catching my breath did give me space to think.

How many of us have had to remind ourselves that its ok for our kids to progress at a different rate to what we originally expected? That childhood is meant to be a journey of discovery and excitement, not a sprint to the finish?

When I chose to have a family I knew that my career would take a back seat but I had originally thought that would be for a few years, until my child was a bit older and didn’t need quite such intensive parental input.

Almost 13 years later, he has the same care needs of a newborn despite having the cognition and spirit of a typical 12 year old boy.

It has meant that any career aspirations have faltered, and my smiles as I celebrate colleagues successes hide a deep sadness and a tinge of jealousy that I have been unable to put the energy into my own career.

It is hard to realise that I am suddenly some 5-10 years older than my colleagues who are being promoted to senior positions, while I remain at the same level I have been at for years.

My recent period of burn out was a direct result of taking on too much; it has served as a hard reminder that despite what the media would have us believe we can’t always have it all. For me a change in focus was in order, allowing me to focus on developing my own interests at work, rather than focusing on promotion, or a new role.

While we are fully aware of how important it is to look after our physical health as parents, caring for our mental health is often more difficult but no less crucial. SN parents give up a lot but we gain far more than we lose; isn’t it about time we give ourselves the same grace we give to our amazing kids and accept that progress no matter how small will happen. After all, life isn’t meant to be a race.