Infantile spasms - any experiences or support please?

[bakingtins]

My 7m old Dd had a run of spasms on Monday, then 3 runs Thursday evening which we managed to film and send to a paediatrician in the family. By Friday we were admitted to Bristol children's hospital, had a video EEG confirmed dIagnosis and on scary doses of pred. waiting for MRI, heart scan, more blood tests and to see ophthalmologist. dd was 'normal' on Thursday, now has a v guarded prognosis, though our consultant is being positive. We are just reeling really.

Thank you. We are grateful that we are Bristol based. My Dad was a consultant paediatrician and only saw about 10 cases in his 30 year career, here they see 2-3 a month from all over the SW and Wales. Did your DD have hypsarrthymia?

I've got 2 older boys. Grandma came to the rescue so DH can come in each day. We were allowed out for a bit yesterday, the boys came in on the bus and we did a tour of the harbour side, but I've totally lost my confidence with her - felt like a totally over anxious new mum again. It makes it worse realising that the world is still turning outside, I think the hospital is designed to lull you into a passive stupor where making a cup of tea is a leisure activity.
So glad to hear your Dd is doing well, we feel like all the plans we had have been ripped away.

It's a very specific ( and quite rare) form of epilepsy with a particularly depressing prognosis. Our whole world turned upside down when we read 'catastrophic for cognitive development'
There are difficult days ahead, tsunami is about right.

Sorry - teaching Granny to suck eggs.
The frequency of the episodes has definitely decreased. Friday was just awful, she had at least 10 runs of up to 20 spasms. Today she had one run of 8. She has another EEG booked a week on Friday with a meds review before then and the other investigations tbc but hopefully soon.
It's good to hear that life can still have lovely moments. We feel like we've been bereaved of her (our?) future.

We were on the renal ward in hospital because neuro was full. The staff were lovely, the walls are full of pictures of celebrity visits etc. I don't want to be Mum of a child whom everyone is extra nice to because their life is shit
It seems worse now we are home - everything is the same and yet nothing is.

The stuff I was worried about last week seems ridiculous now.