I've been meaning to update the blog for ages because we've been having probably the worst week of William's life so far.
So after he came off the steroids William turned into this little smiley lovely boy. We had about a week of loveliness, only to be followed by 8 days of awfulness. A week last Wednesday he started having a lot of fits. Not the infantile spasms but the blinky fits that he had when he was first born. Over the course of a day or two he went from hardly having any to having them every 10-15 minutes when he was awake, if not more. William was soon either sleeping or fitting, and very little else. Over the last week we've spoken to his consultant a couple of times who hasn't been too worried because these fits don't do any long term damage. There's also not a lot she thought we could do about them so we've been struggling along at home. She did prescribe him another anti-epileptic med (vigabatrin) but that's more for the spasms which he's still having a few of. After a few days on that and then an increase in Epilim we reached this morning in a worse situation than ever. We started timing his fits and they were coming at least every 5 minutes. In between fits however he was not really coming round properly and seemed to be fitting mildly. He had also thrown up his whole morning feed and sicked up his tube which we then had to put back down, so all in all we were off to a bad start. Having had over a week of watching him fit every 5-15 mintues we cracked and decided to call the hopsital, if only to be given some reassurance in preparation for going on holiday next week. I could take no more sitting crying watching him fit that often.
On arrival at the hospital we found William's consultant was the consultant on duty which we were very suprised by because she doesnt work Fridays or usually do any ward shifts. At first we felt embarassed because we felt like it looked like we didn't trust her but it quickly turned into a really good thing that she was on duty. Once at the hospital he was still fitting very often. We recorded 11 fits of about 3 mintues each in the first hour we were there. They put him on the sats monitor and found his oxygen levels were dropping too much with each fit and he therefore needed oxygen with each fit. This means for the past week we have had a baby at home who is regularly dropping his oxygen levels - not good.
She discussed the options with us. In the past, phenobaritol has been given in these sort of situations with William but we have reached the point where they want to start weaning him off it because it's not a drug you want to be on long term. They also prefer to save it as a drug to use in an emergency. However the consultant advised that his fits were so serious we had no option but to give William another loading dose (really high dose) of phenobarb and to then increase his maintenance dose (every day dose) and keep him on it more permanently. Should this fail to stop the fits, there are other medicines we can try but they are not considered to be any better than the drugs he's already taking. The other option would be to anaesthetise William and knock him out, thus stopping the fits with the hope that when he was woken up his brain would have effectivly reset itself, but there's no guarantee this would work.
The loading dose was given and William was moved to HDU for monitoring because in the past he has dropped his oxygen levels dangerously low when given the loading dose. He then proceeded to sleep for a few hours but woke up around 5 this evening. He stayed awake for a couple of hours and we only saw him have one or two minor fits during this time which is good. Tonight he will be given his higher maintenance dose and we shall have to wait and see what happens as to what will happen next. They have also had to carry out blood tests to check the level of phenobarb in his blood so we will need to see what results come back from them too. If this doesn't work, I don't know what will happen. He was in such a bad way this morning, I really started to think 'this is it'. When your baby is fitting that much and he's already taking high doses of three powerful anti-epileptics you're not left feeling very optimistic about the outcome. He has definitely made a big improvement today but this is not a one off event, this will happen again and again, it is the nature of his condition. Today I don't feel very hopeful at all about his future. It feels like instead of treating his condition/fits we are now fire fighting it, throwing whatever drug will work at it no matter what the long term consequences are.
I'll update again soon once I have any more news. Night.
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