Quick Update

Just a quick one to let you know where we are at the moment.

Had an appointment at the beginning of last week with Patrick's neurologist at Southampton. We took some video footage of Patrick fitting to show her as his fits have changed slightly and it was her opinion that Patrick does not have Infantile Spasms but is in fact having 'Complex Partial Seizures'. The main difference in the physical appearance of his fits is that there's a definite build up, first his arms and hands start fiddling (looks like he's playing the harp) and his breathing gets a bit deeper. Then he will stretch his arms and legs out and hold it for a second then he repeats this for about 5 mins.

I guess if Fiona (neuro) is right then it could be good news for Patrick as Complex Partial Seizures are far more common and easier to control. We have been given a new medication called Carbemazepine, it does make him sleepy so we're weaning him on to it slowly and wont really see if it's working for about another week. He is still taking the others but we'll begin the process of reducing those soon. We're a bit stressed out with it all at the moment as this new medication sounds great but unfortunately it does come with the risk of making him worse. If his neuro hasn't got it right and he is in fact having Infantile Spasms, this particular med could actually work against him and make his seizures worse. We are closely monitoring him and timing his seizures at the moment until we are confident that isn't the case. He is at the moment still having around 12 fits a day including 2 during the night so it is still a lot to deal with.

Development wise he is still doing well, still enjoying being thrown about and he does seem to be getting a bit stronger in his legs. He has no interest in holding anything at the moment and we're still no closer to getting that head control but he's happy, which is good enough for us. Patrick's physio and occupational therapists are working hard with him and have been giving us a lot of support, with that support comes equipment and so far Patrick has a special chair to sit in and 'corner' table to use all to encourage his head control. This is great but anyone who has visited our house will know, we are a little over crowded to say the least so new equipment is fab but Patrick is taking over the house! There is talk of Patrick needing a special bath support as bathing him is becoming increasingly difficult as he's so big but floppy (weighs 20lb now!) that will be a major problem is our house as these supports take up half the bath and are fitted in, so he'll be alright but the rest of us will have to make do with a cold hose down in the garden I think!

I took Patrick along to an under 1's club last week. It's the first time I've taken him to anything like that and if I'm honest I found it really hard. Patrick was the oldest baby there with average age being 3 months. It was shocking to actually lay him side by side with these tiny babies and watch them rolling around trying to escape when all Patrick can do is lie there and smile. He does win the prize every time for most infectious laugh though and is the most good looking baby so what he lacks in ability he more than makes up for in cuteness!

Anyway, I'm gonna leave it there, it was supposed to be a short entry as we have a really hectic week this week. Got Portage starting tomorrow (a kind of development through play session), Physio and OT on Thursday and on Friday I am meeting a woman who has an 11 yr old disabled daughter with epilepsy so that should be interesting. I am also in touch with a woman from Southampton who's 2yr old son has a very similar condition to Patrick and I will be hopefully going to visit them soon so that may give me a better idea about what the future may hold.

Everyone else is fine, Isaac's loving school and we were proud parents last week at his Harvest festival assembly that he had to sing in, bless.

Hope everyone is ok, love to all, Gemma xx