Well I had one of my mother’s day gifts early – from Jude. On Thursday morning he had fallen back to sleep on our bed. I went a little later to wake him and he opened his eyes looked at me a smiled. I feel that we are slowly getting Jude back. Let’s just hope that Keppra works for him…. Fingers crossed.
Jude is often described as having ‘complex issues’ or something similar….the phrase always stops me, I don’t really think about Jude as complex – to me he’s quite simple…some bits work, some bits don’t.
His medication however is very complex but unfortunately not all working. In an attempt to get seizure control Jude was prescribed Sodium Valporate and then Nitrazepam but it has made very little difference other than the fact that he sleeps a lot and his tone has become much more floppy.
We took him to the consultant a couple of days ago and I was intent of getting rid of some of the drugs – some because they’re not doing anything positive and some because we’re not sure they are still required.
The Sodium Valporate and Nitraepam will be weaned over the next 8 weeks and will be replaced by another anti-epilepsy drug Keppra. Jude’s also been on a small amount of Baclofen since last summer to try and reduce his tone but it’s gone so far the other way it isn’t need – Baclofen too needs to be weaned.
Jude also had a problem keeping food down – possibly due to acid reflux – and he was given Domperidone to help with this….we are going to start reducing this too and it will give us some indication as to whether he still needs it.
With any luck we will be able to get rid of 3 or 4 of his drugs and add just one other. Hopefully, this will keep him awake longer during the day because when he is awake and alert (and not drugged up to his eyeballs) he is so much fun. With his ‘heavy’ drugs being given in the morning and at night, Jude’s best times tend to be 4am and 4pm for 3 or 4 hours. Unfortunately, 4am isn’t our best time!
It is tough when you’re given bad news – for a while it is ‘everything’ that seems to matter….but we do still have all that good stuff and we don’t need to look or listen too hard to know that our little man has many more good times than bad nowadays.
The drugs do take their toll – they knock him out….but when he’s awake there is no doubting the spirit.
And of course Wolves are top of the table!
So we had Jude’s video today to have a look at how well he was swallowing – or to be more accurate, how much he was aspirating. Eating food wasn’t bad, a little went down into his lungs but when taking liquids it was significantly more.
This has real implications on how we are advised to give Jude his food and drink – clinically, we are told, no liquids – put everything through the G-Tube when it is inserted. This is such a difficult decision and one we are unlikely to be able to manage. Jude ‘tells’ us when he wants a drink, it is one of the few definite pieces of communication we have and when he’s having a bottle we get good eye contact. But, the aspiration is probably the cause of his recurrent chest infections.
Another little bit of ‘normality’ that is being slowly stripped away.
No let up in his seizures either….they’re no worse and they don’t bother him but the combination of drugs he is on are knocking him out and it feels like they are inhibiting him more that the seizures. Got a message into the doctor on that one.