Hiya, For those that don't already know we are home again. Patrick was discharged on Friday. It was felt that as the reason he had been admitted was so they could speed up the increase in meds and this had been achieved with some success, there was no clinical reason for him to be taking up a bed. Although Patrick is still fitting I agreed to him being discharged on the basis that he be treated urgently as an outpatient, we have an appointment on Monday morning.
Before his discharge Patrick was given an EEG which had some surprising results. The EEG results showed that the background activity that had always caused concern is now much less which made it easier to see what else is going on. There is now the chance that Patrick's seizures are 'focal seizures'. This basically means that they may be being generated from one area of his brain, in his case somewhere in the bottom right (I'm sure there's a technical term, I will find out). Although there is still a question mark over this, it is somewhat encouraging as if the seizures can be isolated there is some chance that even if he doesn't respond well to medication, they may be able to remove the part of the brain that is causing the problem. Now all this is very far off and Patrick will be having more scans and repeated MRI's as he gets bigger. The Neuro team haven't given up on the Infantile Spasm theory, Patrick's seizures have all the physical characteristics of Infantile spasms just no evidence to back it up. He is proving to be a very complicated patient and has some of the top Neuro's in the country completely baffled. In a way this is good news as I know that people like Professor Kennedy don't like to be beaten and the team will be doing everything they can think of to find the right treatment for Patrick.
At this moment in time Patrick is on 3 different anti-convulsants, Sodium-Valporate (a common anti-epileptic), Vigabatrin (usually for Infantile Spasms) and Topiromate (apparently good for focal seizures). He is also taking Biotin, a vitamin supplement that works along side the Vigabatrin. All of these medications have some sedative affect so Patrick is much more sleepy than he should be. At the moment he is still having the odd seizure, yesterday he only had one which was excellent but we have been here before where he has a brilliant day and we finally think the meds are working but then the next day he has 6-7 so it is early days. We are having to monitor and record every seizure, writing a description of his movements and how long it lasts. He has started a funny quirk of chewing his tongue and screwing his face up which we are told may be a focal seizure so we are monitoring that as well. We are also having to record his feeding patterns as he is so sleepy that he doesn't always manage to stay awake long enough to feed properly so we are taking advice from a dietitian for that.
So, a lot to take in I know, I'm still trying to get my head round all the details myself, hopefully we'll get some more info on Monday. It is great to be home though
and despite all he is going through, Patrick is absolutely gorgeous. Development wise he is still very floppy, he can't hold his head up but he doesn't let that bother him, yesterday he really started smiling a lot and he even giggled! He is very touch sensitive and loves having raspberries blown on his neck. He is a very happy baby and both Martin and I are proud as punch, he is definitely hard work as you can't take your eyes off him but we are used to that now. If he is sleeping and I am doing housework, but more importantly at night time if I'm asleep, he has a small wrist rattle that his Grandma bought him, I put that on his wrist so that if he does start fitting it alerts me immediately, a simple idea that works, until we can buy some more sophisticated equipment.
Anyway, I will update this after Monday when we know a bit more.
Take Care, Gemma xxx
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