Meds are being changed and they are making my little boy suffer once again.
Drug increases are just as difficult to adjust to as drug weaning.
Seizures at night mean that none of us are getting the sleep we need.
Sam manages brilliantly, mostly by sleeping on the way to and from school, and by flaking out once he gets home!
Mummy and Daddy, however, don’t have that option.
And this week is a big one for appointments – seriously, WHY do they all come at once?
Do the appointments people do it to us on purpose?!
The big one is on Wednesday with Sams Neurologist. And I am going to need to have my game face firmly in place as it is not going to be an easy one to get through.
The thing is, when our children's consultants see them it is usually for 20 minutes every 6 months; through no fault of their own they don’t have the chance to really dig deep into what it's like on a daily basis for their patients and their families.
Sam’s Neurologist has been with us since Sam was 18 weeks old, he’s pretty much family, and I love him and want to throttle him in equal measure!
He is also human, he doesn’t have a crystal ball and isn’t able to pick a particular drug off the shelf and say, ‘This is the one that will stop the seizures’.
Sadly it is a balancing/juggling act and it is utterly demoralising as we try a new combination of medications and have to report, again, that the seizures are continuing.
I have only ever cried once in a neurology appointment, and that was the day he had to show me my boys MRI scan… and he had to fight back his emotions too.
This week may well be the second time I cry in an appointment with him – it's just such a hellish experience watching my little man go through so much, and being utterly helpless to do anything about it.
Currently, the medications he is on are holding back the massive seizures that stop him breathing, but are making his other seizure type far worse.
We could try a new drug, but that brings so much uncertainty with it over whether it will help at all, or make things worse, or bring with it awful side effects.
But the main reason for this appointment is to discuss surgery.
More specifically, why no progress has been made with referring him for evaluation.
No parent ever wants to discuss this sort of thing, we are in effect asking them to see if our son is a candidate to have his brain cut in two in a bid to stop the seizures.
I feel sick just thinking about it, but then there’s a tiny spark of hope that the surgery might help him more than anything else.
Until he is evaluated we don’t know if it's even an option, and now this special needs mum has to put her foot down firmly.
I suspect all parents feel as anxious as I do before an appointment - please tell me it isn’t just me?!
I dread it.
But it’s the way we make headway and help our children… fortunately, we have medical professionals who are prepared to work WITH rather than AGAINST us, but it is still a difficult path to walk.