Let's go round again.........

I am having a touch of deja-vu again (that is a subtle joke by the way) but it seems we have been here before.

Patrick was given the vigabatrin again last night and he actually settled down to sleep without any fuss. That in itself was a noticeable change and he slept all night. Prior to the vigabatrin, he had another massive seizure and vomited his feed which he had just finished. Gem was quite upset/scared/shocked by this one but thankfully that was the last of those. (so far).

This morning broke with just one mild seizure and so far ( as of 9 pm, he has had no more). The down side is that he has been quite sleepy and when awake, he has been very agitated, vocally protesting and unwilling to interact with anyone. This is a blow because as much as we want him seizure free - and we want that most of all - we also want our baby to be aware of us and want him to join in with us. He has been doing this in between fits and we had hoped this would continue but obviously his comfort is paramount. Let's hope that as his body becomes accustomed to the drugs, so his awareness and interaction improves too.

I misinformed you via my sister yesterday and said that the topiromate was being withdrawn but this doesn't seem to be the case and in all honesty is probably a big part of why he is so out of it again. The Neuro has said he wants the fits under control as quickly as possible at which point he will start to withdraw any drugs he then feels are unnecessary. He has also said that he wants to check out another possible metabolic issue involving enzymes and Patrick will start treatment tomorrow for this. (Saturday). I can't remember what the vitamin/drug is called but will update this blog later when we know more about it. Again, this is an outside chance but we all have hopes for any little miracle so here goes nothing as they say.

It looks like Gemma and Paddy will be incarcerated for another three days or so although Gemma has got a day pass for tomorrow and is taking Isaac out to see the Brum roadshow in Christchurch. He doesn't know anything about this so it will be great to see his face when she tells him! I will be doing the day shift with my little boy while they are away and I can't wait to have him all to myself. (By the way, Brum is a kids' TV show about a little vintage car that goes on adventures! I wonder if he will get a parking ticket in Christchurch?)

Depending how well I cope tomorrow, I should be able to update this blog when I get home again. If not, it will be as soon as is possible.

Just for the Medics amongst the family - (name dropping now) - The Consultant Paediatric Neurologist looking after Patrick is Professor Colin Kennedy who apparently knows his stuff judging by the amount of Google hits he has. He is something of an authority on Infantile Spasms and early onset epilepsy (I just looked that up as you can probably tell.) Anyway, so far we have been very lucky with all of the Neurologists that have been involved with his treatment and indeed all of the medical staff. It is also nice that none of them have tried to blow us up in the car park too.

On that note, I shall leave you all in peace and say goodnight and again thanks to everyone on Patrick's team and in the fan club too.

We will never get bored of saying thanks for all the love, support and kindness that have been shown to us throughout. You will all get a mention in Gemma's book, no doubt :-)