I’ve really struggled writing this update, it’s been hard to find the right words to describe where we are now as life has once again changed.
In the early years everything was about medical emergencies and dealing with highly stressful life and death situations involving ambulances and hospitals, over time that developed into a lot of research and appointments about different drugs and treatments and learning to deal with shorter, but more frequent, seizures at home.
The challenges feel more to be social and behavioural and we keep getting glimpses of what this means for the future.
Toby is of a size that he often draws looks in the street when he’s in his buggy, he doesn’t look disabled and you can often see people thinking ‘why isn’t he walking?’ but when he vocalises it’s clear he’s not ‘normal’, whatever that means. Recently Toby has started screaming and screeching loudly and a lot of the time, is it frustration? Boredom? A way of trying to tell us something? We really don’t know.
What we do know is that it’s incredibly loud and piercing and goes right through us.
We’re really conscious of it affecting other people and it’s making life difficult. Catching up with friends when Toby is screaming is impossible, one of us has to put 100% of our energy and attention into him to distract him so that he doesn’t scream. Going anywhere to eat or drink with Toby is difficult as again we have to put so much into keeping him quiet that it’s far from a treat for us.
It’s easier to stay at home, often with doors and windows closed so we don’t impact those around us.
And this is how a lot of special needs families live, in isolation. It’s far easier to stay in than to venture out so you create this little space where you don’t impact others and can control the situation which obviously isn’t good for anyone’s mental health.
This time of year everyone is off ‘#makingmemories’ but most special needs families are in survival mode.
We’re very lucky that Toby’s grandparents willingly help us out with looking after Toby while we continue to work but not everyone is as fortunate. Likewise, we get help from social services via our respite agency which gives us a break out of the house, a lot don’t get this.
If you know a special needs parent, drop them a note, ask them how they are and if you can do anything for them, it will mean a lot, especially now in the school holidays.
School Play Scheme
We’re very lucky that Toby’s Special Needs school, The Redway in Milton Keynes runs two weeks of a summer play scheme with children going for various days over the two weeks when there’s staff available to suit their needs.
Toby’s had a few days both weeks and it’s been a massive help for us, knowing he was somewhere safe and being looked after whilst doing the things he loves.
Sadly the thing he loves most is swimming and they do a LOT of it, he’s had a least one, if not two tonic clonic seizures every day so whilst it’s been fun it’s also wiped him out.
Glimpses of the future
As you know we’re going through the process of building an extension which will allow Toby to have a bathroom and bedroom downstairs as he’s just getting too heavy to be lifting around. It’s very difficult trying to guess what we’re going to need by ways of equipment in one, three, five or ten years time so we’re trying to make the best decisions possible. To aid us our OT arranged for us to meet another family with an older girl who’ve gone through the process a few years ago.
It was great seeing all the specialist bits of kit, understanding what does and doesn’t work but it really did highlight again how different Toby, and our, lives are going to be.
Last week we were at Great Ormond Street and in the waiting room was a mum on her own with a boy very much like Toby except he was older, bigger and stronger. The poor lady was frazzled and was doing the return trip, on her own, from Leeds. We offered her what little help we could, it was a stark reminder of how fortunate we are to do this together, to go to appointments together so we both don’t end up totally broken.
Great Ormond Street
We saw Prof Cross a few days ago and discussed if there were any options on drugs, there was one, Triple Bromide. She doesn’t have experience of using it but our good friend Karen (a pharmacist) had done research on it and found that it is used heavily in Japan for Dravet, Prof Cross agreed to give it a go.
The appointment was good as not only did we discuss the protocols for starting the new drug we talked about other options that now might be open to Toby including Epidolex and Cannabidiol.
Lets talk about Cannabis.
There’s loads of stuff in the news about the government legalising medical use cannabis and lots of people have (very kindly) shared articles etc with us.
There are two main components of Cannabis, THC (the bit that gets you high) and CBD (the stuff that’s meant to do all the good stuff) and for many years the CBD element has not been a controlled substance to the point where two manufacturers have gone through drug trials and are currently bringing Epidolex and Cannabidiol to the market as specific epilepsy drugs.
Whilst the government evaluations were underway they halted production (no use making loads if they didn’t get a drugs licence) however with all the current media activity some more is being produced, if the Triple Bromide doesn’t work this may be an option for Toby in the future.
But what about Cannabis Oil?
Well, this contains small elements of THC and so is illegal and this is where the government is now relaxing the law for medical use.
However, in this country (and many others including the USA) there aren’t ANY government regulated medical drugs available. With the change in law many companies will start researching and no doubt producing new drugs but we’re a long way off that as the evaluations are so long.
Which is a good thing. Would you give you child a ‘medicine’ that hadn’t been tested properly, understood, evaluated etc? Especially a drug that has known Psychoactive properties that alter the way the brain works.
So, we may have an option of a pure CBD drug later this year, in the future we might have the option of a combined CBD/THC drug if they are developed and pass safety regulations.
It’s not all doom and gloom
We have had some lovely moments with Toby this month, from a family walk ending in breakfast at the Cherry Tree, to managing to keep him entertained while we have a pint at the pub, special moments we treasure.
Nurse Laura took Toby on an adventure to Emberton to meet up with her family, he had a fab time playing with her kids and even when he had a seizure they were great and looked after him.
Due to the hot weather Toby has spent more and more time in his paddling pool something we never thought possible a couple of years ago, it’s so lovely to see him going crazy and splashing in it for up to an hour some times, mostly without a seizure.
We’ve also had time away, it’s so important for us to recharge our physical and emotional batteries by seeing friends, going on holiday and doing nice things, sadly it’s more often apart than together as it’s just easier for one of us to look after Toby.
As ever, thanks so much for all your support.
