Today would’ve been my sisters birthday. Today is also SUDEP awareness day. SUDEP is how she died. Sudden Unexpected Death in Epilepsy.
If she hadn’t have had epilepsy, I don’t know if I would be more or less worried about Dexter’s recent Diagnosis. But with how poorly he’s been over the last week and how much I’ve been worrying, today is just the obvious time to share this.
As you know, a few weeks back, we took a family day trip to Addenbrookes so that Dexter could have his EEG. He was so brave having the wires on his head and as much as I’d rather the situation didn’t exist, he made me so proud.
Since then he’s been taking Sodium Valproate (Epilim). We are slowly building up his dosage to 5 ml twice a day. For the first week, he had 1 ml twice a day, the second week, 2 ml twice a day and now we’ve just started the 4th week. This is the standard medicine they start all or most epilepsy sufferers on. Mainly because it has the best all round results.
We have forgotten to give it to him in a couple of occasions but mostly it’s been going ok. He’s not had a fit since but they weren’t an everyday occurrence so it’s hard to tell if it’s the meds making a difference so far.
We’ve had the EEG results back recently and they weren’t really good or bad news. They determined that his results of the test were normal. (You might think that’s great and you are probably right, in a way)however whiles that’s to be expected, it doesn’t go any way to explaining what type of epilepsy he has.
We also had a phone call on Thursday from the hospital saying they had a cancellation for an MRI scan and could get him in the following day! Great I thought… until I mentioned he hadn’t been well all this week and they said they couldn’t do it while he wasn’t himself.
So what does all that mean then?
Well, it means we co-sleep.
Of all of the fits Dexter has had, half of them have been during his sleep. So far, we have been incredibly lucky that his jerking and the smacking of his mouth together has been enough to wake one or both of us. Of course it’s never going to be a guarantee that any others he might have will wake us, but we stand the best chance of helping him while he is in our bed.. We also have Paisley in our bed too and I wouldn’t feel right putting her on her own while the boy is in with us.
It also means, that because we don’t know what type of epilepsy it is, we also don’t have any triggers. There hasn’t been one thing that all of his fits have had in common, which means it’s completely impossible to predict.
Knowing it could happen at any time and not knowing what to look out for is hard. And I’m not gunna lie, it’s a bit stressful.
Hopefully it won’t be too much longer before we can get him in for his MRI scan.
Which brings me to this…
I have set up a Just Giving crowd sourcing page in an attempt to raise enough money to buy a bed monitor and alarm system along with an anti-suffocation pillow. If there is any money left over (that’s if we even get that far), we will donate it to SUDEP Action. I don’t want to sound all beggy like I’m wanting you to put me through to the next round of some awful talent show but it really could make so much difference if you are able to donate.
Please just click the link below and it will take you to my JustGiving page. Thank you