When food is medicine

From the age of 3, my boy has been tube fed. From the start we knew we wanted to give him real food blended to go down his tube – we’d learnt quickly that formula feeds didn’t suit him, a major dairy intolerance meant that he had gastrointestinal upset almost constantly even on the most hypoallergenic of feeds.

While his gastro/dietetics team weren’t entirely opposed but weren’t fully behind it either; it took a lot of persuading, cajoling, form filling and agreements that we were doing this against the hospital’s position before they accepted it.

You must remember that this was almost a decade ago and it was definitely seen as divergent from the accepted norm, there weren’t many families doing blended and even fewer openly admitted it!

Sam is thriving on blended. Not only does he gain weight well, but he doesn’t have a lot of the issues of other tubies (reflux, bowel issues, tissue problems, etc). Over the years, the scientist in me couldn’t resist researching links between seizures and food; dairy, soy, gluten and corn can cause an increase in seizures in sensitive individuals so we removed these to see what happened.

His seizures improved. Enormously.

His diet is phenomenal as there are very few things we don’t blend and we’ve been able to remove foods that he can’t tolerate easily.

We do add in a powdered multivitamin, a common issue for children on certain medications is that they absorb lower levels of some vitamins from their food… giving them additional support here just keeps everything as it should be.

I’ll be blunt, it isn’t suitable for every child. You can’t give blended food down a jejostomy for example. Our son’s issues were never around food tolerance or absorption.

It isn’t an easy option but no harder than making meals for any child, and the positive impact on the parents/carers of giving them back the ability to prepare meals and feed their child is enormous.

In 8+ years we haven’t had a single tube blockage nor illness due to blending; medications however have caused numerous tube issues.

Where once it was seen as a militant act to give a child real food through a feeding tube, it is now becoming much more accepted; if families want to try a blended diet and there is no medical reason not to then surely, they deserve the option to try?

‘But he looks so… normal…’ and other unhelpful comments

Uuugh. It hasn’t happened often in recent years (the wheelchair/oxygen cylinder/suction machine kind of give it away) however it was a phrase we heard a lot when he was little. How exactly are you supposed to look with life-threatening epilepsy might I ask? Even now photos can be really deceptive. 

The photo on this post is an old one, but a favourite – he was so, so proud of himself for managing to sit unsupported next to his Dad. To look at him here, he looks like any other happy healthy kid.  In truth, this, like all photos, is a snapshot in time – a moment when he found his balance perfectly.

It lasted a matter of seconds, you can’t see his Dad’s hand carefully placed behind him ready to catch him as he lost that balance, seizures rapidly took over and he slept much of the afternoon away, protected by our friend’s wonderful dog (who along with us didn’t leave his side).

Then there’s the other extreme

. Those who see my boy and fail to see the clever, cheeky boy who can communicate, is a demon at boardgames, loves swimming and LEGO… instead focusing on the issues.

They see a disabled child, and miss all that he is and is capable of. It is entirely their loss as he won’t give them the time of day… he has a slightly evil habit of kicking people who talk over him in the shins then looking as innocent as possible. Can’t say I blame him. Assumptions about his abilities are a plague my son faces almost daily but he will never face them from those who love him

The only thing that will limit him is his imagination.

His most loved Aunty nicknamed him Spaceman (he loves stories about space, rockets and flying amongst the stars), his teachers continue to push him to achieve things he currently finds difficult and we will continue to cheer him on.

One of the greatest disservices anyone can do to another person is to write them off before they’ve even had the chance to try, able bodied or otherwise. Children with disabilities have enormous potential just like all others, they just need someone who believes in them and who will give them the confidence to spread their wings and learn to fly.

Confessions of a medical mom

I’m going to be very honest in this post, kindly take this as both warning and disclaimer. I intend to admit to ignoring a lot of the things that parenting guides tell us we should, nay, must do. And for that matter, doing much of what is prohibited.

As a new mum with a medically complex baby I was terrified that I wasn’t up to the task ahead. Remember the Red Book given to new parents? The one that charts your babies progress through their vital developmental stages? Yeah. We chucked ours into a drawer and ignored it (best health visitor advice ever given that was – as soon as the Dude’s diagnosis came in, she told me to put it where I couldn’t see it).

We already knew he was fighting for his life, developmental stages were not the priority. I found it again during the week before Christmas…a decade after it was first consigned to that drawer it still has the power to hurt, so back in it went (under a pile of stuff that won’t be needed for YEARS).

Bedtime is another one of those subjects upon which parenting experts are agreed – early bedtime, routine are vital.

Erm, not in this household they ain’t. Seizures, multiple medications, regular bedding/clothes changes (especially in the early years before gastro/reflux issues were better managed) meant that bedtime was/is disrupted. To put it politely. Now, we go with what our boy needs – he has his own bedtime routine,  it may mean that some nights he isn’t in bed until 10pm but others he’s fast asleep by 7pm. We learnt long ago not to sweat it, if his seizure activity is high he needs more sleep. Other days, he doesn’t.

And on the subject of sleep… we have co-slept, stayed awake all night while he slept on a beanbag, slept in 3hr shifts while the other was on seizure-watch, slept on sofa beds, hospital chairs… for 3hrs we all slept in a dining room together as it was safer than us being upstairs and our boy being downstairs.

I have done the unthinkable and (brace yourselves) held my child while he fell asleep in my arms, when he was a baby I nursed him to sleep when he was fractious, when the seizures have distressed him to the point that he is inconsolable we have run a warm bath in the middle of the night and just let him relax as the warm water works its magic.

I wish that when my boy was first diagnosed I knew what I know now.

That it’s OK to do things your way. That medical kiddos have enough going on to care about following what the ‘experts’ say. Their parents do too. And it’s fine. At 11, the Dude is absolutely epic. And after a decade plus of this, I think I can safely say that we got this.

Bugs and dropping temperatures

How is Christmas just around the corner? I’m sure it was only a few weeks ago that we were struggling to keep the Dude cool enough with soaring temperatures, yet suddenly there are letters coming home about school trips, Christmas raffles/fairs, Santa… and now we have the opposite issue. Keeping him WARM!

We resisted putting the heating on right up to the final week of November, mild weather helped, as did warm clothes. Then the first of the Autumn/Winter chest infections hit and it was clear that we couldn’t risk leaving the heating off any longer… it’s not the cold as such that’s the problem but the damp in the air that gives him (and me) issues.

I’ll be honest, he scared us a bit with the speed he went downhill but antibiotics were started quickly enough to stave off the worst and we managed to keep him home, albeit with a ‘home HDU’ in operation. All medical parents will recognise the set up; SATs monitor, suction machine and oxygen cylinder set up, tray of syringes with various medications, paracetamol and thermometer at the ready.

Its hard work, exhausting and worrying having any child poorly

. Add in regular physical interventions such as chest physiotherapy, suction to keep airways clear, seizure monitoring/management and the constant concern over whether they are reaching the point where we need to move them to hospital and you’re got a potent mix for anxiety, sleepless nights and exhaustion.

As he so often does, the little monkey bounced back almost as rapidly as he’d tanked and within days he was back to his usual self. Less than two weeks later, and he’s home from school – temperature, coughing, rattly chest.

The phrase ‘here we go again’ flies to mind, as my poor little boy passes out on the sofa, his beloved and ever faithful Merlin never far from his side. Excuse me while I hunt out the Groundhog that must be inhabiting my home somewhere (because Merlin certainly isn’t looking for it).

CVI, Hope, and Christmas

One of the cruellest aspects of the Dude’s epilepsy is how it has damaged his vision. As a baby with uncontrollable epileptic activity going on constantly in his brain, he was effectively blind.

The first glimmer of optimism came from a wonderful human being who evaluated him for developmental therapy. He was the first to explain to us what was really happening in our son’s brain in terms of development v’s seizure activity, he was the first to tell us not to give up hope and he was the first to say the term ‘cortical visual impairment’.

CVI (cerebral visual impairment is the more accurate terminology) is what happens when seizure activity prevents the brain from developing the pathways needed for vision to correctly develop despite the optic nerve and eyes themselves being perfectly formed.

In our boy’s case, the seizures were so extreme that his brain just couldn’t fathom what his eyes were telling it. For the first time since our boy was diagnosed we were told NOT to just ‘watch and wait’ but to start working with him immediately to develop those pathways and help his brain overcome the negative impact of all that pathological electrical activity.

A decade on from that first meeting, an enormous amount of effort and hard work later, and our boy has functional vision.

He still have severe visual impairment however he DOES have useful vision. Working with his teacher for the visually impaired we have learnt a huge amount about how to help guide his visual development; we’ve learnt that his peripheral vision is far better than his central vision, but we now have tools to help him continue to develop his visual skills.

And there is no better time of year for him to really show off how far he’s come, than at Christmas. I will never, ever get tired of seeing how my boys face lights up (sorry) with excitement when he sees houses start to light up with decorations or how much joy he gets from attending events such as the Lights at Trentham Gardens – a favourite family haunt of ours any day, but seeing it lit up after dark with festive music playing at just the right level to not be overbearing takes it to another level for him.

The presence of those multi-coloured light up toys at this time of year make visual therapies that much more fun too.T omorrow we will be putting our decorations up, somehow I suspect our little superstar will be instructing us on where things need to go! Merry Christmas everybody, here’s to a peaceful, safe 2023.

The Thief and The Warrior

For over a decade now we have lived with a thief in our midst. It comes at any time of the day or night, taking precious memories and skills at will. It is up against a warrior who fights it day and night, with courage that is far greater than anyone of his years should ever have to display.  

For a brief period of time in 2011, we were a ‘normal’ family; the shadow that is epilepsy was yet to enter our lives at that point.

Even when that first seizure happened one hot August morning at the children’s centre, and in the weeks following, we still had hope that our boy’s epilepsy wouldn’t impact too deeply on his life.

By December however it was clear that the thief which had already stolen so much of our beautiful baby’s early skills was here to stay.

That is what epilepsy is really, a thief that doesn’t care who you are or what you do. It will come when you least expect it and will knock you off your feet.

The last decade has been a steep learning curve.

Did you know that not everyone loses consciousness during a seizure? Or that focal onset seizures only affect a part of the brain, while generalised ones affect the whole?

I am deeply privileged to have a child who is my greatest teacher and who has taught me what it is to get up and fight the same demons that left you exhausted the day before (and in his case, that didn’t stop attacking even though it was night).

He has the type of epilepsy that comes with claws and teeth – a devastating side-effect as it were of a brain that didn’t quite form as it was meant to. As his mum I carried crippling guilt about that for many years.

After all, my boy’s seizures are relentless… they have stolen his ability to speak, to walk, even to sit unaided. He is unable to swallow safely, and despite multiple medications and the medical marvel that is a VNS he still has multiple seizures daily.

Our children are genuine superheroes.

My boy has a love for life that makes the darkness shrink back, his smile brightens the most difficult of days and his sheer delight and excitement when doing something he enjoys is contagious.

Because each skill learned is a triumph; each achievement, however small, is a victory that deserves to be celebrated from the rooftops! I’ve said it before and I’ll say it again; my son may have epilepsy. But epilepsy does not and never will have my son.

Just Breathe

A lot goes on in my head sometimes, most days too much to even think straight. Juggling family life, appointments, work and everything else life throws into the mix is hard work even without adding in the complexities of a medically exciting child!

If nothing else, the recent pandemic has made me re-evaluate a few things and reprioritise… my work/life balance is sorely in need of attention for one thing, and like most my mental health has taken a battering.

So, it was with a gleeful grin that Mr V and I booked ourselves a few days away over half-term with the Dude to give us the chance to spend some much-needed time together as a family, and to catch up with friends we haven’t seen in far too long.

It is always during this precious time away from the chaos of our daily working lives that I manage to carve out a bit of time to just decompress and unwind – somehow it never quite happens when we’re at home. There’s always something that needs doing, whether its housework or another form to fill in, and appointment to chase up or an email to answer… its never quite the right time to down tools and stop. So, while away, I allowed my brain to do precisely that.

Being surrounded by nature has always been my greatest healer

Technology has given us many great things, without it my son wouldn’t have as good a quality of life, however for me it feels toxic and constraining at times. Being contactable anytime and anyplace is not a natural state, nor does it allow us to be all that we are.

Being in a woodland, or in the mountains allows my brain to relax and for me to regain some perspective. We are lucky enough to live in a rural area, surrounded by woodland, fields and a nature reserve which almost backs directly onto our garden – this is not something everyone can say!

But even within a city, there is always some form of green space where you can go and relax. As special needs parents, it is so important that we look after our own health, physical AND mental, to allow us to effectively care for our children. That is even more the case when we feel we don’t have time to do so, as that is the point when we are approaching our limits.

Do yourselves a favour and allow yourself time to stop and breathe. Your mind will thank you for it.

Appointment anxiety

Half-term is upon us – not entirely sure how that came round so quickly but here we are.

As is always the case with the Dude, he has taken all the changes that the last couple of months have brought in his stride.

I do want to know however who is the monster who thinks it is acceptable to schedule in multiple hospital/clinic appointments and/or reviews in the space of two weeks just as he is getting settled into a new school routine?!

Seriously people, the entire summer passed with barely a whisper from the appointments office and yet as soon as term began…

One of the appointments I dread more than any other are his spinal reviews.

The Dude developed scoliosis, at 4 years old. Like so many children with his neuromuscular issues, the weight of the head is just too much for the muscles of the spine to support so the spine gradually curves over to the side.

We know surgery is the only way to ensure that the spine is stabilised and prevented from curving to the point that it crushes his heart and lungs, but that is not something anyone wants for their child.

This time, we’re seeing his surgeon.

Thanks to covid-19 it’s been A While since we’ve seen him, and he is concerned that the chaps spine may be reaching a level of curvature where difficult decisions around surgery can’t be postponed.

It’s the appointment I have feared for almost 7 years. I spent much of the afternoon sitting in the waiting room while the Dude and his Dad are down in x-ray, trying to hold it together.

I have no idea why scoliosis terrifies me so much – after all, we have lived with uncontrollable, life-threatening epilepsy since he was a matter of weeks old, and yet there is something so insidious about the way a curved spine will slowly continue to worsen, gradually causing my child increasing pain and disability, that eats away at me.

And is so often the case with these amazing little people, the appointment went better than we could ever have imagined – a combination of excellent postural support from his wheelchair, a superb sleep system than he actually LIKES (I kid ye not), and a dynamic orthotic suit that supports his spine means that his scoliosis is relatively stable… surgery can wait for a bit longer.

Fingers crossed we can keep him well enough that surgery can wait until growth rods are no longer required and he can have a single surgery to fuse his spine and sort this scoliosis once and for all. As ever, hope is the thing we hold on to, while our amazing child continues to shine.

Pet loss and special needs

A few weeks ago we had to make the decision to have our much-loved tabby cat put to sleep.

We’ve had Pixie since Sam was around 3 years old; a tiny rescue, she very much chose us.

After discussing our family situation with the rescue centre, the lady said she thought she had a couple of cats that would fit the bill – as soon as we walked in with the Dude in his SN pushchair, this tiny scrappy tabby, ran straight up to us and on to our boys lap, purring like a motorbike.

The rest is history.

Pixie had enormous character – a diminutive diva, her growth stunted as a result of having had a litter before she was ready, her pneumatic purr the result of a tumour in her throat.

She and the Dude shared a very close bond.

Years before we considered an assistance dog, Pixie took it upon herself to sleep at our boys feet and wake us up by jumping on us when he had a seizure at night.

She wanted to be the first to welcome him home from school, the first to sit on his lap and the first to make herself known to every new person who came through the door.

She even ‘mothered’ Merlin the golden retriever when he arrived as a puppy a few years later!

While her incredibly noisy purr was her trademark and allowed us to know she was coming from 100 yds (saving more birds and small rodents in the process than I can possibly imagine), it was ultimately the cause of her demise.

Although the tumour that caused her to be so noisy was removed during surgery before we adopted her, over the years it slowly returned and became cancerous.

While I was able to be with her at the end, the Dude wasn’t.

This is not my boys first encounter with death and loss; he’s had to say goodbye to too many friends in his short life, as well as his beloved Grandpa.

But with Pixie, this was an animal he saw every single day and we didn’t know how he would respond to this loss of his much loved furry friend.

It may not be everyone’s choice, but we opted to bring her home and bury her in our garden. It meant our boy could see her one last time and say goodbye.

I am forever glad that we could do this.

It was clear that our little guy understood – he never fails to impress us with his intelligence and understanding, as he gently nodded and squeezed my hand as I explained to him that she wasn’t suffering now, comforting me at the same time.

She was absolutely his cat, allowing him the opportunity to process her death in this way helped him understand.

Turns out it was cathartic for us all.