The first day of September wasn’t great for Tobes, being a Saturday he was indulging in some washing machine watching, a favourite pastime, when he suddenly went into two minute seizure. Kim was all over him making sure he was breathing and wasn’t turning blue by administering oxygen, keeping him comfortable and safe.
When he came out of the seizure he slipped into an unconscious sleep known as post-ictal which helps his body recover for 45mins, typically we can set our watch by how long he’s out for and then he comes round smiling but a little dazed and confused.
He was still laid out on the utility room floor, cushions and blankets supporting him and 30mins into his restorative sleep when I heard his breathing change, he’s back in seizure.
This time less than a minute and back to being unconscious.
20mins later and he’s convulsing again, this time it’s not stopping and it looks different, the last time I saw a seizure like this was the one that ended with him in a coma.
Now I’m very worried.
We give a dose of strong meds to stop the seizure, nothing happens.
We’re preparing to phone for an ambulance and the next round of rescue medication when finally, after 10 minutes he stops and collapses into a deep unconscious state.
I cannot begin to describe how long that 10 minutes felt to us, what can you do in 10 minutes? Just imagine how hard it is watching someone you love convulse on the floor for that long.
At the same time as this was happening, our dear friends, the Wildsmith Pattisons from Whitley Bay, were due to arrive for a short visit. Not knowing if we were going to be bundling Toby into an ambulance or not, we told them not to come. Thankfully they came anyway and once the drama died down were there to give us the huge hugs and love we needed to help us recover.
Not long after Toby’s last seizure a nurse and a carer arrived as we’d booked respite so we could meet friends for lunch. After so many seizures it felt horrible going out, but we were desperate for a break, a little bit of normality and some time not being on constant high alert, so decided to leave him in the capable hands of his nurse. We had a lovely few hours break. Tobes came round dazed and confused from the seizures and the drugs but was ok.
Sleep
In that respect it’s been a tough month, the new drug that Toby is on is impacting on his sleep patterns and routines, it’s nto been uncommon for him to be awake, happy but chatty, 3-5 times a night and then gets up between 0430 and 0530.
I know that’s normal for a lot of kids, the difference is we have to sleep with a monitor next to us on full volume, if he starts chatting on and ‘da da da-ing’ for 20mins at a time we can’t switch the monitor off in case that suddenly turns into a seizure.
It’s like those first few weeks of having a new born that no one can ever prepare you for.
It’s beyond exhausting.
And in those moments when Toby is soundly asleep we’re not, we’re lightly dozing, listening for any change in breathing.
And it works, he’s had a few seizures during the night this month and our reactions are instant, we’re out of bed and rushing to his room just because we registered the change in his breathing while we were asleep.
Potassium Bromide
During August I mentioned that we’ve started Toby on Potassium Bromide, a drug used in other countries with some success in Dravet. We’re currently going to Great Ormond Street every 4 weeks to see Prof Helen Cross who is monitoring the side effects closely. Each visit the dose increases until we get close to a maintenance dose and see if it helped with seizures.
Over the first week of doubling the dose we saw a similar pattern as when we introduced it, Toby became very shouty and screamed a lot, he pawed at his face, his sleep was all over the place and he just wasn’t himself. Now it’s settled down he’s a little better and it’s helped his seizures a tiny bit. We’re back to Great Ormond Street soon to talk about increasing further.
It’s great that we’ve got so much time with Prof Cross as one of the leading experts in the UK on Dravet however it’s hard work getting Toby into London for appointments, it’s definitely a two person job and we’re incredibly lucky that both our jobs allow us time to do this.
Teeth and frustration
We’re very lucky that there is a ‘Priority’ dental service in Bucks that looks after kids with special needs and provides and excellent service to them. We’ve seen the dentist Kemi a few times and she’s always been brilliant with Toby although he’s never let her actually get into his mouth to have a look around.
As Tobes is so developmentally delayed there’s no reasoning or bribing him as he just doesn’t understand, if he doesn’t want something in his mouth it isn’t going to happen.
The morning of his appointment Kim put him in the car, went back to lock the front door and walked the 3metres back to the car, to find Toby slumped in his car seat unable to breathe due to seizure. Acting quickly she opened his airway and got oxygen to him and helped him ride it out. This is incredibly stressful, particularly when you are standing in an open car door with school traffic passing you oblivious to what you are dealing with.
Once finished she did what not many other parents would do.
She took Toby to the dentists.
Kim explained what had happened and asked that they try to examine him while he was post ictal, they did and it was the best examination ever!
He’s got small but good teeth Kemi told us.
Toby’s morning meds, not many then!
As he was coming round Kim took him to school and dropped him there and went off to the supermarket.
An hour later I get a phone call, Toby’s fallen and hit his face, they think a tooth is damaged but ‘there’s too much blood to be sure’.
After speaking to Kim she pays for the shopping and heads back to school to collect him and take him home battered, swollen and feeling very sorry for himself.
He’s managed to damage his tooth an hour after seeing the dentist, really?!!
The swelling went down over the weekend however a week after it happened and his mouth suddenly erupts again , school call and Kim picks him up, she calls the GP ‘sorry, we don’t do teeth’ so she takes him to the Paediatric unit at hospital where we have open access for Toby but ‘we don’t do teeth’!
I manage to speak to the Priority Dental service again who arrange an emergency appointment at the hospital, 2hrs after Kim left there so she’s hanging around in MK for 3 ½ hours with a poorly boy who’s doing a great impression of the elephant man by this point.
When he’s seen they confirm damage and infection so it’s a course of antibiotics and a referral to Great Ormond Street to see if the tooth needs to come out under general anaesthetic.
Sometimes it doesn’t rain, it pours.
As you can imagine, days like this are stressful as well as being physically and emotionally draining.
Holiday
Fortunately we did manage a few days away at the start of the month while Toby was brilliantly looked after by the team at Helen House. We had 3 nights in Mallorca which was lovely but so, so short. At this point a massive shout out to everyone who attended this years Big Olney Food Festival, thanks to you the organisers donated £1000 to Helen House out of this years profits.
Thankfully the lovely Amegreen nurses who collected Toby had a far better experience than earlier in the year and he behaved all the way home without any seizures.
Our respite and time recharging with friends is so important, it keeps us bobbing along but sometimes we do sink, it all gets too much, we don’t get enough sleep and other things throw challenges at us.
Thank you to all of you for continuing to support us on our journey with Troublesome Toby.