Paraldehyde – the fragrant rescue medicine

Samuel’s rescue medicine has been Midazolam for a very long time. I think most (if not all) of the epilepsy world know about Midazolam. Samuel has had it since the beginning where he was given it several times a day – until his seizure treatment plan was tightened and he wasn’t given it for every single seizure. It’s always worked well. It does the job. If he exceeds his protocol (I will post that on here sometime in case anyone is curious) he gets a sqiurt of the prefilled syringe of Midazolam into his cheek. It generally works. But as Samuel has got older it’s had a more noticeable effect on his breathing and that was why we now have oxygen cylinders at home (and an oxygen protocol).

The other issue with having Midazolam in our armoury is it’s relationship with Clobazam. Now we love Clobazam. It’s been one of Samuel’s epileptic medicines for a long time and it is very effective. He has it twice a day and it is one of his most crucial medicines. But Midaz and Clobazam are almost like sister medicines. Give them too close together and you are at risk of over sedating him (which could effect his breathing), or as they work with the same receptors of the brain, Midazolam can almost dilute Clobazam making it less effective.

Prior to Samuel being admitted to hospital before the summer, he had earned himself Midazolam three days in a row. Not ideal. Think it was a contributing factor to why he got so poorly and had to be admitted.

So this is where Paraldehyde comes in. It was my suggestion to Samuel’s doctor about the possibility of introducing Paraldehyde as either an alternative to or replacement of Midazolam.  Dr H thought it was a good idea (I occasionally do have them) and we agreed that we would trial it to see if we found it effective and it did the job adequately. Well it did, and it is now Samuel’s first rescue medicine (although we will still continue to have a good stock of Midazolam in the cupboard as back up).

Now you might be thinking, ‘why didn’t you have Paraldehyde before given that Midaz is obviously quite a dirty drug?’. Unfortunately you don’t give Paraldeyhyde in quite the same way as Midazolam. It’s given rectally, plus the medicine smells. The moment you open the bottle the room is filled with, let’s just say, a unique smell. Once the bottle has been opened you have to act quickly and fill the syringe (which has a tube attached) and ‘insert’ immediately. You need to be quick as the medicine will block the syringe and wont be useable. On the wards they use to give the medicine in glass syringes but I guess budget cuts and health and safety stopped that and now you’ve just got to use it fast.

It’s not the perfect drug (are any of them?), but it’s the lesser of two evils. Unfortunately given the terrible summer Samuel had I’ve gotten very experienced (and quick) at giving it, so don’t think much of it. The only thing that bugs me about it is the way it makes him smell of it for the next few days. It’s like it fills his pores and makes his breath smell. But it doesn’t stop me going in for a smooch. NOTHING would stop me giving my boy a big fat kiss!

Advertisements

Early days

Well we’ve had four sessions now at Julia’s House and I do really feel that bringing them into our lives is certainly going to be really positive for us.

For three of those days Samuel slept for most of the day (which he is doing now as I write) so the carers didn’t really have a chance to play with him. One of the sessions he was much more awake, but very unsettled with some bigish seizures thrown in, so we didn’t think he was in the right mood for play time.

But I do think they are getting to know him. The only problem is (and I need to keep reminding myself that it is still early days) that to be able to leave him with them, they need to see and understand which of his seizures we medicate and which we just cuddle him through.

There is a protocol, which is a good protocol, but when it comes down to it, it isn’t helpful for a child like Sam who has a lot of seizures. So the protocol says to medicate when he’s been having a seizure for 10 minutes. The problem is, Samuel has a lot of seizures. When he’s twitching, that is actually a seizure. So there are some things he does that we don’t medicate, that we just have to overlook.

There are some seizures, even though he’d been doing it for several minutes, where I would just scoop him up onto the sofa with me and we’d cuddle for however long he needed. It wasn’t a seizure that particularly would worry me and in fact in our language at home we’d probably say that he was unsettled and having a bit of a fuss.

Apart from leaving him with Auntie C a few times for no longer than a couple of hours, I’ve never left Samuel since he came home from hospital. It has always been his dad or I with him (mainly me). I’ve never had to explain it before in quite such detail. This is different to when I’m discussing Sam’s condition and seizures to his doctors. This is so I can leave him confident that his new carers understand when to get the Midazolam out and when just to give him a good squeeze.

Because Julia’s House are booked up with training over the next couple of weeks, we’ve not got a session again until next month. But I’ve got a plan. With the use of our little video camera, I’m going to film Samuel to show what we do medicate and what we just cuddle through. I think this might help me show the nurses and carers because I have found it really quite difficult to explain and worry that I’ll just never be able to articulate it correctly. But I keep reminding myself, it’s still early days.

They are more than happy for me to stay with Samuel when he has his sessions and I can go off into another room and have a read or a coffee if I want some space. But I like being around the carers and seeing the other children play (I could write a whole post about how adorable the other children are) and watching people chat to Samuel and admire his gorgeousness.

They make me feel normal.

It is so nice to be around people who will chat and cuddle Samuel and aren’t put off by him not obviously reacting to them. They stroke his hand and chat to him about what the weather is like, what the other children are doing, they tell him that they like his shoes and his new jumper. They hold him tightly when he has a seizure and tell him that it will be alright, he will be ok. Very quickly they have become Samuel’s friends.

I know we’ll get there in time. After all, it’s still early days.

 

Related posts: