Regular readers will know that over the last few months Toby’s ‘partial’ seizures have progressively been getting worse, increasing in length and duration till the point he’s having a seizure every minute or so during bad times.
Last month we spoke to the neurologist about a new drug we’d heard of called Perampanel and asked if we could give it a go which was agreed.
In context most of the drugs that are given to Dravet children aren’t licenced or even fully understood. Perampanel isn’t licenced for children under 12 years but desperate times call for desperate measures.
At first the drug showed promise, Toby’s seizures were down to 25 or so a day, a 75% improvement which was great, and we dared to hope that better times were around the corner.
However once Toby was on the full dose things started to go wrong, over the period of two weeks he lost all mobility to the point he couldn’t even hold his head up, his personality was ‘flattened’, we were getting no engagement and he was getting upset and frustrated as he couldn’t do anything. It broke our hearts to see him trying to drag himself across the floor.
We’d lost our boy.
Out of desperation we stopped administering the drug for a couple of days until we saw the neurologist in a well-timed appointment. During those couple of days Toby started to show an improvement and we wanted that to continue so discussed a reduced dose and agreed a plan moving forward.
Two weeks later and Toby is nearly back to himself, smiling, happy and mobile however his seizures have also returned to previous levels.
It’s so difficult having to make decisions like number of seizures versus quality of life.
Impact on us
As well as the mental strain of seeing Toby’s capabilities degrade in front of us there was a massive physical impact too. As Toby lost all mobility we were carrying him like a 14.5kg floppy bag of spuds everywhere and it too took its toll.
Kim seriously hurt her back and struggled to move for a week, while I got lots of help from our parents and carers it still put an additional strain on all of us. I’ve had to have several sessions with an osteopath to try and keep my back in line but it feels like a losing battle at the moment.
We’re looking at options for what we can do to adapt our house for disabled living. We’ve always felt we are getting ahead of ourselves but wanted to be prepared but after the last few weeks we’ve realised we need a full solution as quickly as possible.
We had thought that we would make sure there was provision for hoists and tracks to move Toby around but wouldn’t put them in place immediately however we have now realised we need them now, not in a few years time.
It’s been quite a scary, eye opening time for us and given us a taste of a not too distant future.
As well as everything else the drug also made Toby sleepy. In addition to a straight 13 hours overnight he was getting up to 3 naps or 5 hours sleep during the day. I’m sure many of you with kids could only dream of such long sleeps and time to yourself and we were the same but after a while it just got worrying and was so upsetting that he could barely stay awake for an hour. He had no quality of life.
Fortunately, Toby’s had his bed for a year now and loves it as much as he always has.
The occupational therapists in MK sourced it for us and it’s brilliant.
Built around a full hospital frame that lifts and tilts it’s a full size single bed with sides that are over a metre-high meaning that there’s no way Toby can get out of it, for a number of years.
At first we were horrified with the little plastic windows as it looks a bit prison like but Toby absolutely loves it can can’t wait to get into it, he also loves pulling faces through those plastic windows.
On a more positive note we’ve been experimenting with real food for Toby. He still shows no interest in eating so everything is going straight to his tummy via the gastrostomy but we’ve introduced an Ella’s Kitchen fruit or Veg pouch each day on top of his normal formulated milk diet to give him some natural goodness and variety.
Suffice to say it seems to be doing him some good as the results ‘at the other end’ are looking good, I won’t go into more detail than that!
We’ve got a long stay at Helen House booked next week and it can’t come quick enough, we’re mentally and physically exhausted and need a break, so much so that Kim’s managed to persuade me to leave Toby totally in the very capable hands of the HH Team and go away for a few days.
So while Tobes is having fun and playing with the team we’ll be sitting in the sun (we’re getting on a plane!) and hopefully recharging our batteries.
The team at HH have been brilliant and worked out lots of details so that we can get away, we can’t thank them enough for that.
I know we’ve put a couple of things on Facebook about how it’s been over the last few weeks and the messages of support we’ve had have been overwhelming and such a comfort, thank you for everything you all do and say, it helps us through the dark times.
Toddlers for Toby
I have to end on a positive and lovely story. All the girls (Toby was the only boy) from our NCT Ante-natal class completed a sponsored lap of Harrold Country park last weekend…in fancy dress!
Not only did they look fantastic and have a good time they raised over £1000 for Toby’s Trust, something we’re incredibly touched by.
Thank you all for organising such a fantastic event.