Well it's day 11 of this hospitalisation. Longest time yet! has all become a bit of a blur of late, totally lost track of the days and dates etc, and what has happened when! Almost in zombie mode now, get up go to hospital, go home after tea, go to bed, repeat...except for important days when i need to see the docs then it's sleepover at the WCH!
at least 7 seizures witnessed today, i think, losing count but that is decidedly less than previous days so that's something! slight temp today, given panadol. probably picked up some other nasty bug being in hospital.
Otherwise happy in herself, playing and smiling and babbling away. It's a good day today! :)
Plan for tomorrow...Lumbar Puncture to test spinal / cerebral fluid for metabolic disorders. Some test results back! They are normal, so don't shed anymore light on the situation. But it is good that they are normal.
Calling it Epilepsy with Developmental Delay until a diagnosis is found, which won't be for a very loooooong time i think.
wondering how much longer this is going to go on for????? Only lilly can answer that.........
hugs
ReplyDeletexx
What did the geneticist (not sure about the spelling)say when you saw them the other day? Think that was the same day Lilly had her eye appt.
ReplyDeleteSorry to hear about the LP's, that would have been horrendous for Lilly and you both. Hope things turn out better on Wed. X
have not seen the genetics people yet, the metabolic team are doing all the tests and they looked and compared photos of me jase, em and georgie as babies lilly's age to lilly, said she was slightly unusual looking?????? But have not heard anything. Don't think anything is standing out. They said her lactate and glycosides and amino acids were borderline high, so thats why they are testing her CSF to see if it is high around the brain which could be causing the seizures.
ReplyDeleteYea the LP was horrid, sanjay and mandy did it, made a bit of a mess :(
however only 7 seizures again today, and we upped the Kepra, so looks like something is starting to have some effect!
Now just have to get her back on normal feeds, only drinking half and gavaging the other at the moment has lost interest in actuallty swallowing the milk!