Diagnosis day – two years on

It’s been a whole year since my last diagnosis day post. It’s gone by in the blink of an eye, I really hope the rest of his life doesn’t go the fast because I really can’t keep up!

This year is probably not as upbeat as last year. I feel like we’ve had an awful couple of weeks.

Fortunately for us we seem to have managed to get our head around pws and life was running quite smoothly. All the professionals we need at the moment are in place. Olivers doing far better than we ever expected him to be doing at 2 years old. Especially after being given the bleak summary by that neonatal doctor.

I imagine you have sensed that there’s a but in here…and there is.

Olivers seizures have become worse and the pattern of him being unwell to cause them has disappeared. In October alone he had 19, these are only the ones that I’ve managed to log as well. More could have happened with us being unaware because we hadn’t really been looking for them. Don’t get me wrong I know this isn’t as many as other children have…but it’s considerably higher than the general population.

I am now back into an undiagnosed fuzzy state. I feel lost and helpless. I keep attempting to convince myself that in 6 months time I’ll be looking back and wondering what on Earth I was worried about…unfortunately that’s still 6 months off and it feels like a very, very long way off.

My head is racing and I’ve now found that trying to concentrate on anything at all is hard work. It’s taken me a few days to pull this short post together.

I find that every little thing he does makes me wonder is it normal odd child things or is it seizure activity

They have said that they are pretty sure it’s epilepsy but EEG’s aren’t confirming that and we’re waiting to hear about our MRI results. He’s on medication now and it seems to be working. He’s still had a number of seizures on it but they have calmed down and after a three day stay in hospital with ones happening every few hours it’s a relief to be able to deal with maybe one or two a day. The only downside to medication is that I now don’t know if his change in personality is age, seizures or the medication. Two year olds have tantrums and push boundaries but a matter of weeks ago he was so laid back that he was horizontal…now he claws my face and throws himself everywhere.

So approach with caution, my reactions tend to be quite delayed and often don’t make much, if any, sense. If you’ve asked a question and stare at you looking a bit blank it’s probably because, although I’m physically with you, I’m mentally somewhere else and it’s often completely unintentional, so just repeat yourself to make sure I’m listening.

2 thoughts on “Diagnosis day – two years on

  1. Hi Becky, keep your chin up you’re doing a wonderful job. I will say Caroline’s epilepsy never showed up on an EEG , they didn’t believe me for years that she had it. That changed when she had fits in hospital. Don’t be surprised if they can’t clinically prove it. The meds do change personality in some cases, they also affect memory. It’s a juggling act to get the right concoction of meds but once they do things will improve. We are all here to help you, you only have to ask. You are a wonderful mum but don’t be afraid to be vunerable you can’t be strong every day xxx it’s not weakness is human xx

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