Back in April we met with Toby’s neurologist and agreed to reduce one of his medications, we didn’t have great seizure control and all the meds have side effects, very broadly, one hinders his mobility, one his speech and one his eating, to reduce any of these side effects would be great.
We started a very slow wean of Clobazam, a sedative which helps to suppress the excess activity in Toby’s brain, and over June and into July we’ve seen some positive changes. Toby wants to be on his feet more, he has a new vocalisation sound he can make, he clapped for the first time and he’s really happy and bright.
These last two make such a huge difference, having lots of smiles, giggles and fun gets us through the darker days.
Sadly through July we’ve seen a degradation in seizure control, turns out the clobazam was doing more than we thought.
Over the last few weeks the number of smaller drop seizures and mini convulsive seizures have increased. They’re moving from 5-10 seconds to 10-30 seconds, sometimes only a minute or so apart. That’s hundreds of seizures every day.
The fully convulsive seizures have also increased and become more violent, we’re been dealing with a seizure over a minute long, often 3-5 minutes, nearly every day.
Toby is coping but is physically and mentally exhausted.
We’re coping but we’re physically, mentally, and emotionally drained.
It’s remarkable how Toby can bounce back, he wakes from a ‘post-ictal’ unconscious state about an hour after the seizure, he’s weak and struggles to sit but the smile is there and it makes everything more bearable, I don’t know what we’d do if we lost that smile.
For us it’s not as easy, every small seizure that lasts 30 seconds gets our hearts racing, adrenalin pumping and brains concentrating on all the things we need to consider, is he safe where he is, can I give oxygen, rescue breaths or meds where he is, where can we get too quickly for help, should I tie the dog up and leave her while we deal with this? We really do go into full alert and when he comes out of the seizure we take a deep breath but the flight or fright feeling is coursing through our bodies.
Before we can come down (it really is like a high) Toby goes into seizure again, and again.
Walking through town this can be happening lots, folk don’t see what’s going on with Toby or our reaction to it, we smile, wave, say hello to people but all the time we’re on such high alert that it’s draining us.
It’s not just the physical reaction either, emotionally its hard seeing someone you love go through so much, every seizure chips away at our core and impacts us more than even we probably realise.
Sadly we reached the bottom of the barrel a couple of weeks ago, walking around with heavy heads, feeling numb both physically and mentally but know we just have to keep going for Toby, for each other and continue to do our day jobs. Often we just feel empty, there’s no mental capacity to do anything, strangely, work often helps as it forces us to think and talk to people and not hide in a hole like we want to.
We had a long weekend planned with Toby in Helen House and us going out in Oxford to a gin festival, having nice meals out and spending time together. It was all too much, we checked Toby into Helen House, he had a big seizure, we talked drugs with the doctors and then left.
We got to a cabin with a lovely view and crashed, literally. We slept, ate, did a little walking and watched a box set (thanks Karen!), it helped to give us a little boost but it doesn’t properly recharge our batteries.
Whilst there I posted a picture on Facebook of the view, a gin and an explanation that things have been tough. The love you all showed us was incredible and means the world to us, there were several ‘I had no idea, you always look so cheerful’ comments which is great but the reality is, everyone has stuff going on that is tough, it’s all relative, your tough is different to mine but none the less we are both dealing with ‘stuff’.
It was a lesson to me to make more of an effort to tell people what’s going on, if I’m struggling I need to tell my friends and family what help I need, they’re not physic, they can’t see through the mask that we all wear to hide our real feelings and emotions, while we desperately try to keep going.
As a result of Toby’s seizure deterioration, we’ve increased the clobazam back up, not sure there’s been an impact yet as he’s continued to have a lot of seizures.
We’ve also had to agree to stick to a certain dose as there’s a trial of a new drug coming up in August at Great Ormond Street and to qualify he has to be on the same dose of drugs for four weeks prior to it…fingers crossed the dose of clobazam helps and that the new trial is a possibility. It’s not without its risks though so we need to balance the benefits of trying something that could help with something that could have a detrimental effect on him in other ways.
We’ve both managed a couple of weekends away this month too, Kim, and her sister Karen, had a wonderful break in Croatia, relaxing in the sunshine, enjoying some quality sister time, as well as a fab weekend with her girlfriends in Majorca celebrating their 40th birthday (how long can she drag this out for???) while I got to spend a long weekend in Yorkshire with John. It’s great to get away and forget reality for a short period of time but you’re always thinking of how Toby is and how the other is coping on their own. Along with our parents, we’re a great team and share the load so if one isn’t around it’s a lot harder, it’s the little things like nipping to the loo and leaving Toby unattended that highlight how important it is to have an extra pair of hands, and eyes.
There’s also the ‘back to reality with a bump’ side of things, Kim had been back in the house for less than an hour when Toby went fully convulsive, it’s amazing how much adrenaline can undo the good work of sunshine but we persevere, ensuring we each get away separately to try and rest and recuperate with friends.
We’re very lucky to have amazing friends all over the country, sadly it’s not easy taking Toby to see them but they’re all ace and come to see us. Sometimes though it’s just too much when things are as bad as they have been over the last month or so and we’ve had to cancel a few visits from our friends at the last minute due to Toby’s worsening condition. We hate doing it and our friends are really understanding but it’s easy to see how quickly we could become isolated.
Talking of good friends, along with seventy others John and Gary climbed Ben Nevis with the Dravet Syndrome UK charity. Remember that weekend when it was scorchio hot? (thanks again for your donations to Toby’s Trust, he thankfully has an aircon unit in his bedroom now) well they climbed it that weekend, fortunately(?) they didn’t get the weather we did, it lashed it down and wasn’t much above freezing at the top. John said it was the hardest thing he’s ever done, and he’s sailed round the world so that’s saying something.
Thanks to you and all the others that did the climb as you raised of £53k for the charity which goes towards helping people like us and funding research into this condition.
Special thanks to all the folk at Peak Performance, a training session run on the field by us who, totally out of the blue, donated an envelope full of cash to us. It’s actions like this that get us wet around the eyes, total strangers wanting to do something to help us is such an overwhelming experience. Thank you, we’re very privileged to live in such a nice place with thoughtful people. These random acts of kindness along with the incredible friends and family who regularly donate to Toby’s Trust give us the ability to get the things that Toby needs to make his life better. We’re incredibly lucky.
Again, I have to say thank you to everyone who reads this, sees us in the street, drops us a note or do wonderful things for us, it really does keep us going, particularly the big bags of biscuits from Walkers, thanks Karen B!
Also special thanks to our parents for helping to us to care for Toby summer hols and we’re off getting drunk with our friends, we couldn’t keep going without you.