So last week Samuel was in hospital with a virus. He came home on Friday and has been fine since. Fine in regards to his breathing.
The seizures that were worrying us before his stay hospital, during and since he came home have continued. It didn’t help that his doctor was away and he is the one and only (medical) person that knows Samuel so well.
We’ve been dipping into the Midazolam cupboard rather a lot lately which isn’t ideal by any means. So when I spoke to Dr H yesterday he came up with a plan. We have increased Clobazam by 0.5mls twice a day and will see how that goes for a week, then if we need to make more changes then we will increase his other medicine Vigabatrin.
We have to be careful about how much we increase Clobazam by as we are already at a very high dose. But Clobazam is a very strong drug (part of the same family as Midazolam) so we are hoping that the extra ml a day will be enough.
And the ketogenic diet? Well we are going to give it a few more months then review whether we feel that it is benefiting Samuel. If we agree that it isn’t helping him anymore then Samuel will wean off it and we will look at replacing it with Topiramate, a drug Samuel has been on before.
So we have a plan. It is not the perfect plan but it’s a plan. Everything feels like it will be ok if you have a plan.